Labor Day is the traditional end of summer...and it has been a summer. We've traveled to Florida and the Outer Banks, have had three children break bones, had an earthquake and a hurricane. The younger children participated on a swim team for the first time ever and I signed up for my second half marathon. It was busy, hectic, and insane (which seems redundant unless you actually live through it! Then it makes sense!) season, but as it draws to a close, we can look back and say that I'm so grateful that we survived it all and enjoyed most of it. The kids experienced snorkeling and kayaking and restaurants every night for a week but also learned that they could do more than they thought they could when asked to swim one more lap when they were really tired. There were no excuses...not even for the drama queen with the bright green cast on her arm. :)
This afternoon, while I should have been reading my developmental psychology textbook, I was instead catching up on my friend's blog, Deo Volente. http://eightbawl.blogspot.com/ She had posted about homeschooling and the fact that she wasn't looking forward to it, but she believed that it was the right thing to do. So often, especially in the home schooling realm, we hear the excitement and the thrill of starting the new year, but how often do we hear that it's hard work, exhausting, and can actually be insanely monotonous. Then there's the overwhelm you feel that the laundry is just piling up because you really need to read, The Big Thicket to your kids and this small group of little, or not so little, people will soon be a rioting mob if someone doesn't start dinner and soon!
So here I sit at my desk tonight pondering the new school year. Andrew is now at the local community college, and Chris will be taking one class there as well. That leaves Chris's other subjects, William, and the three youngest. The current plan is for me to teach Chris and Will while Billy alters his work schedule so he can handle the younger three.
I have been receiving text messages and emails asking if things here are ok because the blog hasn't been updated in quite a while. Will is doing ok...stably unstable is my favorite term. He has a narrow margin so he gets sick very easily and very quickly. He has begged to not go to the hospital through two illnesses this summer...I gave in and did not take him and regretted it both times because his recovery was so much more difficult and prolonged. I won't make that choice again.
Caroline has lost weight which is a fairly large concern. She is supposed to drink a Pediasure every day (which she hates and it is insanely expensive!) and a milkshake (which she obviously does not mind at all!). The hope is that the dense calories will help her recover some of the weight she lost and help her grow. Her initial MRI was inconclusive and difficult to read, so a second was performed. We are still waiting on the results of that one. I am mailing the disc to Dr. C in Cinci so he can evaluate it.
So as fall looms, I look at the calendar and wonder how the next few months will actually look. I have trepidation and concern but I am also grateful that I have a sovereign God who knows all that is happening and is at work within my family.
Sunday, September 4, 2011
Wednesday, July 27, 2011
Just Keep Swimming...
I have actually tried to update the blog since we got home, but just as I hit the "Publish Post" button, my computer hiccuped and it disappeared. That happened at least twice, so, the slow learner that I am, I will click that little save button a few times as I type so maybe, just maybe, this post will actually make it to the cyber world. :)
The trip home was fairly smooth. We stood in line in Miami waiting to check our bags and our cooler of remaining IV supplies. I was armed with letters from Dr. T and documentation from the IV company, but we did not need any of it. We did realize that our seat assignments for the second leg of the flight had each of us with a window seat...which means that we were scattered throughout the plane, and no two of us were sitting together. That's manageable for Andrew and Chris and maybe even Will, but for the littles? Um, I don't think so.
I kind of expected Miami security to be a challenge...but it really wasn't. It took forever, and they scanned my carry on three times. The whole stethoscope and bp cuff thing drove them nuts. Will of course had to be patted down since he was on an IV, but the agent was fabulous. He chatted with Will the whole time and basically explained what he was doing, but he distracted Will with conversation. When he finished and I finally gathered all of our stuff, he gently shook my hand and quietly whispered that he wished us well and that Will was a cool kid. He did not have to be so gracious with Will, but he was. And Ben and Caroline were both teasingly asked for their driver's licenses by TSA agents, so they thought the whole process was hilarious.
We grabbed lunch, flew from Miami to Atlanta, and arrived in Atlanta early. But we sat on the plane. And were detoured to a different gate. And we sat on the plane. And when we finally arrived at the new gate, it was closer to our next gate, but the hour we were supposed to be laid over was disappearing rapidly. Billy was toward the front of the plane, so he headed to the new gate to try to get better seating assignments for us and the littles. Caroline would be okay sitting next to a stranger, but the stranger might be ready to mutiny by the time his ear has been talked off and he finally arrived in Richmond...
Those of us in the very back of the plane finally disembarked and raced to the next gate...where Billy was still waiting for an agent to appear. He then headed to Starbucks for me (cold, caffeinated, and caloric were the requirements) while I stood in line to manage the seating issues. For the first time in all four flights...we ended up together. Literally. She maneuvered us to the very back of the plane where we had all of one row and the three seats behind.
The flights were otherwise unremarkable, and we safely arrived in Richmond where we were met by the same limo driver. The drive home was slow due to traffic, but he regaled us with stories of his other job in law enforcement. I asked the kids what their favorite activities were...Will answered snorkeling, Billy loved kayaking, and Caroline loved swimming. Andrew, of course, has a need for speed and totally loved the Wave Runners, while Chris was still complaining that I was trying to dump him off of my Wave Runner. Everyone enjoyed the trip, which was a blessing of immense proportions.
Will did, unfortunately, become ill not long after we arrived home, as did Caroline, so we have spent the last two weeks trying to get him back to baseline. Tonight, he is sick again, so tomorrow (Thursday) we will either be at MCV or back at the pediatrician. He technically should have been in the hospital when he initially got sick, but he begged me to not take him. If I had, he probably would have recovered much faster, but I understand his not wanting to be there. But soon we won't have that option; he is really struggling.
So here's the rundown on all of our warped Coleman fun:
We had a blast in Florida. We came home. Will got sick. Billy got sick. Caroline's gut decided to not function, so we had to deal with that. Caroline broke her arm falling off her bike. Caroline caught a stomach virus. Will is still sick...and now on his second antibiotic. Will is sick...still...and may need IV antibiotics and a stay in our favorite suite at MCV. Oh, and Ben broke his toe at a swim meet. We Colemans know how to entertain the medical community! We really should have an emergency department room dedicated to us.
We appreciate the lovely thoughts and well wishes as we headed to Florida, and we are grateful that the trip went as smoothly as it did. We are glad to be home, and are grateful that if Will did have to become ill, at least it was at home and not on the trip. We are supposed to head to the beach on Friday, which we hopefully will be able to still do. We'll know tomorrow...
Saturday, July 9, 2011
Day 4...Kayaking, Wave Runners, Swimming...and Key West
We are so gonna need a few days to recover from this trip.
This morning, we had reservations to kayak at 11. We had long discussed how to manage the kayaks...we decided that if we used 4 doubles, then neither Will nor the littles would need to kayak alone. So we teamed up Andrew with William (He has the most muscle so if he had to paddle alone then he was best equipped to handle Will.), Chris with Benjamin, Billy with Camden, and I had Caroline.
Justin, the watersports manager, had an amazingn sense of humor and entertained the kids while he was fitting us with life jackets. He recommended that we head south first since the wind was light. We did...and it was way too easy. Of course, that meant that we were paddling with the current first...which is never my first choice. We made it down to the 7 Mile Bridge, and I had the brilliant idea of going around the bridge piling to turn around and head back.
That defines blonde moments. The 7 Mile Bridge is where the Atlantic and the Gulf meet at the end of Marathon Island. That means that you have currents colliding...and since the tide was going out, the current was pulling us into the Atlantic...provided we didn't hit the bridge piling.
I was able to let Andrew and Chris know to turn around, but Billy chose to pass under the bridge to turn around. I was way too busy trying to avoid the piling and attempting to make forward progress...I was paddling for all I was worth, but I was going literally nowhere.
Someone mentioned today that maybe me and tidal waters should not be mixed. :) Caroline was totally wigging, and I was just totally focused on getting us out of the situation I had unwittingly created. Fortunately, the boys had enough upper body strength and were not as close to the piling as I was, so they were able to get clear a little faster. It took a lot of muscle and sheer grit and determination, but we made it. I was really glad that I had not gone for my run this morning. I needed all the energy I could muster. I think it is time to seriously hit the gym and build some of that upper body strength before I decide to take on tidal waters again.
When we returned, we told Justin about where we went, and he said, "You aren't supposed to go to the bridge. The current there is too strong." Really? We hadn't noticed. :)
The kids were starving, so Billy ran to the grocery store for some more lunch materials, we made sandwiches, and hung out at the pool. About 3 this afternoon, Billy went back to the water sports tent and rented 3 wave runners which are like jet skis on steroids. 3 people can ride each one. So, Andrew took Ben and Will, I had Caroline and Chris, and Billy took Camden with him and we had an absolute blast. There is nothing quite like skimming the water at 50 mph.
About 4:30 we decided that heading to Key West might not be a bad idea. When you are all of an hour from the southernmost point in the continental US, then maybe you should go...and go in time for the sunset. So we dashed through showers and headed out.
Wow. It was crazy. This is considered off season down here, and if this is off season, I have no desire to find out what it is like in prime season. There were people everywhere! However, the sunset was spectacular, the entertainment at Mallory Square was fabulous, and the evening was memorable. We stopped at Amigos Tortilla Bar for dinner. It was crazy loud and unbelievably busy, but the food was way too voluminous and it was amazingly good. Oh, and their margarita was fabulous.
We did find the monument for the southernmost point, took a picture, and are now headed back to Marathon with some incredibly exhausted children. I am utilizing my phone as a hot spot because as soon as I get Will's IV going, I would love to be asleep. Tomorrow we plan to hang out at the pool with the kids and pack in preparation for returning home on Monday.
This morning, we had reservations to kayak at 11. We had long discussed how to manage the kayaks...we decided that if we used 4 doubles, then neither Will nor the littles would need to kayak alone. So we teamed up Andrew with William (He has the most muscle so if he had to paddle alone then he was best equipped to handle Will.), Chris with Benjamin, Billy with Camden, and I had Caroline.
Justin, the watersports manager, had an amazingn sense of humor and entertained the kids while he was fitting us with life jackets. He recommended that we head south first since the wind was light. We did...and it was way too easy. Of course, that meant that we were paddling with the current first...which is never my first choice. We made it down to the 7 Mile Bridge, and I had the brilliant idea of going around the bridge piling to turn around and head back.
That defines blonde moments. The 7 Mile Bridge is where the Atlantic and the Gulf meet at the end of Marathon Island. That means that you have currents colliding...and since the tide was going out, the current was pulling us into the Atlantic...provided we didn't hit the bridge piling.
I was able to let Andrew and Chris know to turn around, but Billy chose to pass under the bridge to turn around. I was way too busy trying to avoid the piling and attempting to make forward progress...I was paddling for all I was worth, but I was going literally nowhere.
Someone mentioned today that maybe me and tidal waters should not be mixed. :) Caroline was totally wigging, and I was just totally focused on getting us out of the situation I had unwittingly created. Fortunately, the boys had enough upper body strength and were not as close to the piling as I was, so they were able to get clear a little faster. It took a lot of muscle and sheer grit and determination, but we made it. I was really glad that I had not gone for my run this morning. I needed all the energy I could muster. I think it is time to seriously hit the gym and build some of that upper body strength before I decide to take on tidal waters again.
When we returned, we told Justin about where we went, and he said, "You aren't supposed to go to the bridge. The current there is too strong." Really? We hadn't noticed. :)
The kids were starving, so Billy ran to the grocery store for some more lunch materials, we made sandwiches, and hung out at the pool. About 3 this afternoon, Billy went back to the water sports tent and rented 3 wave runners which are like jet skis on steroids. 3 people can ride each one. So, Andrew took Ben and Will, I had Caroline and Chris, and Billy took Camden with him and we had an absolute blast. There is nothing quite like skimming the water at 50 mph.
About 4:30 we decided that heading to Key West might not be a bad idea. When you are all of an hour from the southernmost point in the continental US, then maybe you should go...and go in time for the sunset. So we dashed through showers and headed out.
Wow. It was crazy. This is considered off season down here, and if this is off season, I have no desire to find out what it is like in prime season. There were people everywhere! However, the sunset was spectacular, the entertainment at Mallory Square was fabulous, and the evening was memorable. We stopped at Amigos Tortilla Bar for dinner. It was crazy loud and unbelievably busy, but the food was way too voluminous and it was amazingly good. Oh, and their margarita was fabulous.
We did find the monument for the southernmost point, took a picture, and are now headed back to Marathon with some incredibly exhausted children. I am utilizing my phone as a hot spot because as soon as I get Will's IV going, I would love to be asleep. Tomorrow we plan to hang out at the pool with the kids and pack in preparation for returning home on Monday.
Day 3, Theater of the Sea
The travel of Wednesday, the snorkeling of Thursday, and their required wake up calls proved exhausting for all of us. So Friday morning we let everyone sleep til they woke up, except for Chris and Will whom we had to wake up at 9. The tropical wave that had been tormenting our weather had finally moved off and blue sky and insane humidity remained. The blue sky we were grateful for. Not so much the humidity, especially since we were going to be walking around an outdoor marine animal park.
This is probably the one item of Will's wish that I really didn't research much so we really didn.t know what to expect. When we arrived (yes, the kids were about to revolt at spending another hour in the van.), we entered through the gift shop and followed directions to the desk for special programs. The woman was very gracious, handed us a map, and told us the bottomless boat ride was about to leave. We head out to get in line.
It doesn't take long for Will to look alarmingly unwell. Billy gets him a bottle of water, and we go ahead on the boat ride, knowing that we may indeed leave as soon as it is over. It only lasted 6 minutes, but it was really fun. The dolphins swim alongside the boat doing tricks, and even swim inside the boat, which sounds weird, but remember it is bottomless. The center of the boat is open, and the passengers sit along the outside edge looking over a short wall to the center of the boat.
We fed everyone a quick lunch, then headed for a short walk around the outside exhibits. There was a stream running through the park with fish of the area and a couple of really large turtles. Then we got to the birds. Ben stood in front of a parrot and bobbed his head. Then the parrot bobbed his head. Then Ben, then the parrot. He stood there for forever just hanging out with this blue parrot. Will is really looking rough, but he doesn't want to leave yet, so we head to the dolphin show with a couple of Powerades.
The dolphin show was fabulous. Not only did the trainer show what the dolphins, Twister and Sherman, were capable of doing, but she discussed how they trained them. We were sitting under a tent and there were fans, so Will was tolerating the heat a little better.
We then walked around the corner to the sea lion show. Again, the trainer explained how they trained the sea lions. Wilbur, the sea lion for this show, was hilarious. He smiled, waved, pretended to be a shark, and went down a slide. When it came time to select people from the audience to toss a ring for Wilbur to catch, Ben was one chosen. The girl handing out the rings stated that he deserved one because he was laughing so hard.
Due to the heat and fatigue, we opted to leave after the sea lion show. We headed back to the resort where the kids thoroughly enjoyed the pool.
For dinner...we headed to Keys Fisheries. A couple of the kids are not huge fans of seafood, but I refused to allow them to order burgers. At Keys Fisheries, you stand in line to order...there is a sign that says, "If you were at Disney, it would be 2 hours. Here, it is 15 minutes." All but one enjoyed the fish, the key lime pie was lovely, but the best part was the employees who were not only helpful but actually had a sense of humor. When your order is ready, they call out your favorite sports team....I blurted out Redskins, and they were like, "Who?" Um, really?
It was a full day...the boys chose to watch a movie last night, but after connecting Will to his lifeline, I crawled into bed and fell asleep in seconds.
This is probably the one item of Will's wish that I really didn't research much so we really didn.t know what to expect. When we arrived (yes, the kids were about to revolt at spending another hour in the van.), we entered through the gift shop and followed directions to the desk for special programs. The woman was very gracious, handed us a map, and told us the bottomless boat ride was about to leave. We head out to get in line.
It doesn't take long for Will to look alarmingly unwell. Billy gets him a bottle of water, and we go ahead on the boat ride, knowing that we may indeed leave as soon as it is over. It only lasted 6 minutes, but it was really fun. The dolphins swim alongside the boat doing tricks, and even swim inside the boat, which sounds weird, but remember it is bottomless. The center of the boat is open, and the passengers sit along the outside edge looking over a short wall to the center of the boat.
We fed everyone a quick lunch, then headed for a short walk around the outside exhibits. There was a stream running through the park with fish of the area and a couple of really large turtles. Then we got to the birds. Ben stood in front of a parrot and bobbed his head. Then the parrot bobbed his head. Then Ben, then the parrot. He stood there for forever just hanging out with this blue parrot. Will is really looking rough, but he doesn't want to leave yet, so we head to the dolphin show with a couple of Powerades.
The dolphin show was fabulous. Not only did the trainer show what the dolphins, Twister and Sherman, were capable of doing, but she discussed how they trained them. We were sitting under a tent and there were fans, so Will was tolerating the heat a little better.
We then walked around the corner to the sea lion show. Again, the trainer explained how they trained the sea lions. Wilbur, the sea lion for this show, was hilarious. He smiled, waved, pretended to be a shark, and went down a slide. When it came time to select people from the audience to toss a ring for Wilbur to catch, Ben was one chosen. The girl handing out the rings stated that he deserved one because he was laughing so hard.
Due to the heat and fatigue, we opted to leave after the sea lion show. We headed back to the resort where the kids thoroughly enjoyed the pool.
For dinner...we headed to Keys Fisheries. A couple of the kids are not huge fans of seafood, but I refused to allow them to order burgers. At Keys Fisheries, you stand in line to order...there is a sign that says, "If you were at Disney, it would be 2 hours. Here, it is 15 minutes." All but one enjoyed the fish, the key lime pie was lovely, but the best part was the employees who were not only helpful but actually had a sense of humor. When your order is ready, they call out your favorite sports team....I blurted out Redskins, and they were like, "Who?" Um, really?
It was a full day...the boys chose to watch a movie last night, but after connecting Will to his lifeline, I crawled into bed and fell asleep in seconds.
Thursday, July 7, 2011
Day 2, Happy Snorkeling Birthday, Camden!
Leaving home by 630 am two days in a row is a record for a couple of our kids. Being awake at 630 am two days in a row is a record for a couple of our kids. So despite whining and gnashing of teeth, we were indeed once again in the car at 630 am heading toward a new adventure. After another hour and a half in the car, we arrived at Pinnekamp State Park.
There was a long line of people registering for today's snorkeling trip, but we made it through, received our equipment, and headed to the boat. The sky was anything but blue and sunny, so it was pretty much expected that we were going to get wet...long before we jumped in the water.
We arrived at Grecian Rock. William had borrowed an underwater video camera from some friends, so he headed off to explore. Andrew grabbed Ben and they headed off to explore. Chris headed off to explore. Cam crashed and burned. His snorkel was not a good fit, so he was taking on water which makes breathing a little challenging. He has no gills, so he ended up back on the boat. Caroline was refitted with a life vest and a new, smaller snorkel, and she waited for me. I, without thinking, did the incredibly not bright move of jumping in without my mask. Um, yeah. Back to the ladder I go. It is really the first time I have been in tidal water since I was rescued from a riptide last summer, so it unexpectedly took me a few minutes to adjust. Once I did, I was fine. Caroline was then handed into the water near me so I could supervise her. Billy has no desire to be in water over his head, so he stayed on the boat with the incredibly kind and patient captain and dive master.
Off we went...and got halfway to Grecian Rock when Caroline just wigged. Completely. She tried to breathe through her nose, couldn't, panicked, and ripped off her mask. Okay...I try to calm her down, get her mask back on her, and realize that we just need to head back to the boat. So she keeps her eyes closed, I convince her to at least kick so I am not doing all the work for both of us, and I tow her back to the boat.
They get her straightened out again...While they are working on her, Billy convinces me to head back toward the reef and come back and let Caroline know how cool it is, and maybe we can convince her to try again. I do. It is very cool, and then I head back to once again retrieve Caroline...but Andrew is swimming near the boat and apparently has already agreed to take her so I can actually SEE the coral reef. I am very grateful, but that makes the third time I have swum against the current to arrive at the reef. I swim around for a while, but the lungs are getting unhappy, so I head back to the boat and my inhaler. All of the other kids arrive one by one, and everyone has enjoyed themselves...and are now starving.
We had encountered rain while on the boat headed to Grecian Rock, and as we were headed back to shore, it rained again. We rinsed off, got back in the car, and headed for food. The dive master told me about The Fish House, so we headed there. What a great choice.
Andrew wanted one of everything on the menu, Chris decided a burger was safe, Will and Cam chose safety with the fish and chips, and Ben and Caroline decided to split a full Caesar salad and a half pound burger with fries. (Billy was convinced there would be leftovers, but nope. No leftovers at all.) The food was amazing and really reasonably priced for what we received. I asked if we could return there tomorrow, but I was voted down since it is over an hour from our resort.
The server asked if we wanted dessert, and I jumped right in and said, "Of course we want key lime pie!" Like anyone in my family doubted that I would order that. I looked at Cam and told him he could choose his own dessert since it was his birthday...and he chose key lime pie. Good boy...knows a good dessert when he sees one.
Well, to everyone's surprise, the server wished Camden a happy birthday in a way none of us ever expected.
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Yes, that is a fresh yellow tail snapper with a candle in it. We are at the Fish House which purchases all of its fish whole from local fishermen and filets them on the premises. What else would they put a candle in to sing Happy Birthday to someone?
We returned ever so slowly to the resort due to road work, and then the tropical wave that has been causing lots of unsettled weather hit with a fury. The lightning and thunder hit just as I was heading to take Caroline to the pool, so we went to plan C. Billy headed to the grocery store and the Redbox while I updated the blog. The kids have been swimming, are now showering, and Chinese food has been ordered. A nice, quiet evening with a movie and Chinese food, and hopefully a pillow not long thereafter is exactly what we need.
I know everyone is worried about William. Tuesday night he slept with an IV and we continued with another IV all day while we traveled. By last night, he looked truly awful and I was extremely concerned. Today he looks better, but he needs another IV tonight. The activity level is much higher than he is accustomed to, but so far, he is doing better than I feared. I brought enough fluids to run two IV's every day, but so far, we have only needed one. He may crash yet, but so far he is holding his own.
There was a long line of people registering for today's snorkeling trip, but we made it through, received our equipment, and headed to the boat. The sky was anything but blue and sunny, so it was pretty much expected that we were going to get wet...long before we jumped in the water.
We arrived at Grecian Rock. William had borrowed an underwater video camera from some friends, so he headed off to explore. Andrew grabbed Ben and they headed off to explore. Chris headed off to explore. Cam crashed and burned. His snorkel was not a good fit, so he was taking on water which makes breathing a little challenging. He has no gills, so he ended up back on the boat. Caroline was refitted with a life vest and a new, smaller snorkel, and she waited for me. I, without thinking, did the incredibly not bright move of jumping in without my mask. Um, yeah. Back to the ladder I go. It is really the first time I have been in tidal water since I was rescued from a riptide last summer, so it unexpectedly took me a few minutes to adjust. Once I did, I was fine. Caroline was then handed into the water near me so I could supervise her. Billy has no desire to be in water over his head, so he stayed on the boat with the incredibly kind and patient captain and dive master.
Off we went...and got halfway to Grecian Rock when Caroline just wigged. Completely. She tried to breathe through her nose, couldn't, panicked, and ripped off her mask. Okay...I try to calm her down, get her mask back on her, and realize that we just need to head back to the boat. So she keeps her eyes closed, I convince her to at least kick so I am not doing all the work for both of us, and I tow her back to the boat.
They get her straightened out again...While they are working on her, Billy convinces me to head back toward the reef and come back and let Caroline know how cool it is, and maybe we can convince her to try again. I do. It is very cool, and then I head back to once again retrieve Caroline...but Andrew is swimming near the boat and apparently has already agreed to take her so I can actually SEE the coral reef. I am very grateful, but that makes the third time I have swum against the current to arrive at the reef. I swim around for a while, but the lungs are getting unhappy, so I head back to the boat and my inhaler. All of the other kids arrive one by one, and everyone has enjoyed themselves...and are now starving.
We had encountered rain while on the boat headed to Grecian Rock, and as we were headed back to shore, it rained again. We rinsed off, got back in the car, and headed for food. The dive master told me about The Fish House, so we headed there. What a great choice.
Andrew wanted one of everything on the menu, Chris decided a burger was safe, Will and Cam chose safety with the fish and chips, and Ben and Caroline decided to split a full Caesar salad and a half pound burger with fries. (Billy was convinced there would be leftovers, but nope. No leftovers at all.) The food was amazing and really reasonably priced for what we received. I asked if we could return there tomorrow, but I was voted down since it is over an hour from our resort.
The server asked if we wanted dessert, and I jumped right in and said, "Of course we want key lime pie!" Like anyone in my family doubted that I would order that. I looked at Cam and told him he could choose his own dessert since it was his birthday...and he chose key lime pie. Good boy...knows a good dessert when he sees one.
Well, to everyone's surprise, the server wished Camden a happy birthday in a way none of us ever expected.
We returned ever so slowly to the resort due to road work, and then the tropical wave that has been causing lots of unsettled weather hit with a fury. The lightning and thunder hit just as I was heading to take Caroline to the pool, so we went to plan C. Billy headed to the grocery store and the Redbox while I updated the blog. The kids have been swimming, are now showering, and Chinese food has been ordered. A nice, quiet evening with a movie and Chinese food, and hopefully a pillow not long thereafter is exactly what we need.
I know everyone is worried about William. Tuesday night he slept with an IV and we continued with another IV all day while we traveled. By last night, he looked truly awful and I was extremely concerned. Today he looks better, but he needs another IV tonight. The activity level is much higher than he is accustomed to, but so far, he is doing better than I feared. I brought enough fluids to run two IV's every day, but so far, we have only needed one. He may crash yet, but so far he is holding his own.
Day 1...And They're Off!
I may have only gotten 3.5 hours of sleep before we left, but when we all got up yesterday morning, everything was packed and ready to go. All we had to do was shower, dress, eat breakfast, and put a million bags of IV fluids and blue ice in our cooler with wheels and duct tape the cooler lid closed.
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The limo and a Ford Explorer arrived literally on the stroke of 630. They loaded up all of our luggage and the insanely heavy cooler, and then loaded us...after we took a picture.
So we headed to the airport in style. Andrew played with all the gadgetry, and we all played the game "Discover the Pattern." Caroline managed to stump the boys who were thinking way too hard for 630 am.
I anticipated a few issues checking the medical supplies. Last time, I had to show documentation as to why we were carrying IV fluid. But this time was a piece of cake. He didn't even bat an eye at the Cooler Of Insanely Heavy Weight. He just tagged it and sent it on its way down the conveyer belt. Caroline thought it was so cool how the baggage all went down a really steep hill. I just cringed, wondering if the wheels were gonna survive the trip, knowing that carrying it through the airport to the car in Miami would be enough to cause Andrew and Chris to mutiny.
The first flight was seamless. Camden was a nervous wreck, but settled down about 30 minutes into the flight. This was the first commercial flight for four of the kids...Then we got to Atlanta. Caroline was desperate for a restroom, so she and I headed there while waiting for Billy to exit from the very the back of the plane. We then walked as fast as possible to the next terminal, arriving at the gate just as they announced, "Last call for Coleman, party of 8, before we give away your seats." Phew. We literally just made it. We had not previously received seat assignments, so as we are walking onto the plane we are trying to determine who is sitting with whom. We are scattered all over the plane in 2's, so it was a little stressful. But, it all worked out and we arrived safely in Miami which was the goal.
The condensed version from here to Marathon is: We did get a rental van with no problems, drove around Miami looking for food and finally settled on a Wendy's cause we just wanted to get to the resort, stopped at Walmart for Will's required Powerade, water, and snack foods, then drove forever to Marathon, arriving at 730 last night.
When we walked into the resort office and gave them Will's name and the info from MAW, they were waiting for us. The manager had apparently called and wanted to remind them to take a picture...they were so excited. They told us they had a surprise in the unit for us and that there was more where that came from, and then they laughed and apologized to Billy and me. Ruh Roh. What exactly are we walking in to?
Well, they obviously have chatted with folks at MAW because once again, all of Will's favorite junk foods were waiting for him...the kitchen counter was covered with Sun Chips, 3 Muskateer Bars, Skittles, Mentos, Mentos Gum, a kite, a beach ball, and a pool noodle. Wow. The kids waited for me to take a picture then dove in.
It had been a long day. We did unpack, prepared for Thursday's snorkeling trip, and collapsed into bed. The kids are not thrilled with another 530 am wake up call, but hey, they get to snorkel so no whining is allowed.
So we headed to the airport in style. Andrew played with all the gadgetry, and we all played the game "Discover the Pattern." Caroline managed to stump the boys who were thinking way too hard for 630 am.
I anticipated a few issues checking the medical supplies. Last time, I had to show documentation as to why we were carrying IV fluid. But this time was a piece of cake. He didn't even bat an eye at the Cooler Of Insanely Heavy Weight. He just tagged it and sent it on its way down the conveyer belt. Caroline thought it was so cool how the baggage all went down a really steep hill. I just cringed, wondering if the wheels were gonna survive the trip, knowing that carrying it through the airport to the car in Miami would be enough to cause Andrew and Chris to mutiny.
The first flight was seamless. Camden was a nervous wreck, but settled down about 30 minutes into the flight. This was the first commercial flight for four of the kids...Then we got to Atlanta. Caroline was desperate for a restroom, so she and I headed there while waiting for Billy to exit from the very the back of the plane. We then walked as fast as possible to the next terminal, arriving at the gate just as they announced, "Last call for Coleman, party of 8, before we give away your seats." Phew. We literally just made it. We had not previously received seat assignments, so as we are walking onto the plane we are trying to determine who is sitting with whom. We are scattered all over the plane in 2's, so it was a little stressful. But, it all worked out and we arrived safely in Miami which was the goal.
The condensed version from here to Marathon is: We did get a rental van with no problems, drove around Miami looking for food and finally settled on a Wendy's cause we just wanted to get to the resort, stopped at Walmart for Will's required Powerade, water, and snack foods, then drove forever to Marathon, arriving at 730 last night.
When we walked into the resort office and gave them Will's name and the info from MAW, they were waiting for us. The manager had apparently called and wanted to remind them to take a picture...they were so excited. They told us they had a surprise in the unit for us and that there was more where that came from, and then they laughed and apologized to Billy and me. Ruh Roh. What exactly are we walking in to?
Well, they obviously have chatted with folks at MAW because once again, all of Will's favorite junk foods were waiting for him...the kitchen counter was covered with Sun Chips, 3 Muskateer Bars, Skittles, Mentos, Mentos Gum, a kite, a beach ball, and a pool noodle. Wow. The kids waited for me to take a picture then dove in.
It had been a long day. We did unpack, prepared for Thursday's snorkeling trip, and collapsed into bed. The kids are not thrilled with another 530 am wake up call, but hey, they get to snorkel so no whining is allowed.
Monday, July 4, 2011
Snorkeling, Kayaking, and Limos...Oh My!
Will and I arrived home Wednesday afternoon in time to pick up the littles, head home, unpack, shower and change, and head to Richmond for his Make-A-Wish reveal party.
And what a party it was. Jervetta had outdone herself. The table was totally decorated with a beach theme, and she had amazingly appropriate gifts for William...like a sand pail full of Skittles, Mentoes, and 3 Musketeers (his favorite candies). Then there was the bag of goodies for the beach, and a Make-A-Wish bear for all the kids, including Andrew. Of course, Caroline's bear was white with pink lace. :)
So over the course of the evening, Jervetta and Tammy went through the itinerary of how/when we were going to accomplish Will's wish of snorkeling and kayaking. Make-A-Wish does not miss a beat. As soon as Ben heard the "A limo will pick you up at 630 am" he just about swooned and totally stopped listening. A limo? Are you serious? Unbelievable.
So, the limo takes us to the airport on Wednesday and we spend the majority of the day getting to the Keys, Thursday we snorkel, Friday we kayak, Saturday we visit Theater of the Sea, and Sunday is the free day. Monday we head back and the limo will meet us at the airport and take us home.
So how is Will gonna handle all of this? Not so sure, to be honest. He now has a cold, which is an energy challenge, all of the activities are energy challenges, and it's going to be hot which is yet another energy challenge. I have ordered enough IV supplies and fluids for two IV's a day, but that is really all I can do at this point. I know where the hospital on the island is, I know what to do, but I just pray that he does well. He knows he will have to travel on the Iv and every night he'll sleep with one. Whether that is sufficient to prevent a massive crash I don't know...but I hope and pray it does! Mostly, I hope he has the opportunity to be a 14 yo boy and can enjoy the time and experiences for which he wished...
I promise to blog and keep you up to date on how things are going. :)
And what a party it was. Jervetta had outdone herself. The table was totally decorated with a beach theme, and she had amazingly appropriate gifts for William...like a sand pail full of Skittles, Mentoes, and 3 Musketeers (his favorite candies). Then there was the bag of goodies for the beach, and a Make-A-Wish bear for all the kids, including Andrew. Of course, Caroline's bear was white with pink lace. :)
So over the course of the evening, Jervetta and Tammy went through the itinerary of how/when we were going to accomplish Will's wish of snorkeling and kayaking. Make-A-Wish does not miss a beat. As soon as Ben heard the "A limo will pick you up at 630 am" he just about swooned and totally stopped listening. A limo? Are you serious? Unbelievable.
So, the limo takes us to the airport on Wednesday and we spend the majority of the day getting to the Keys, Thursday we snorkel, Friday we kayak, Saturday we visit Theater of the Sea, and Sunday is the free day. Monday we head back and the limo will meet us at the airport and take us home.
So how is Will gonna handle all of this? Not so sure, to be honest. He now has a cold, which is an energy challenge, all of the activities are energy challenges, and it's going to be hot which is yet another energy challenge. I have ordered enough IV supplies and fluids for two IV's a day, but that is really all I can do at this point. I know where the hospital on the island is, I know what to do, but I just pray that he does well. He knows he will have to travel on the Iv and every night he'll sleep with one. Whether that is sufficient to prevent a massive crash I don't know...but I hope and pray it does! Mostly, I hope he has the opportunity to be a 14 yo boy and can enjoy the time and experiences for which he wished...
I promise to blog and keep you up to date on how things are going. :)
Wednesday, June 29, 2011
My Beautiful Ballerina, Dr. C, and News
So after her performance, the room mom came hurrying down the aisle to retrieve me, saying, "You need to come now." Uh, okay. I follow her into the room and Jen explains that Caroline had been white as a sheet and was laying on the floor. Caroline says she is just tired. I scoop her up and decide that maybe she just needs food. So off I go to grab a chicken salad sandwich and feed her. She seems to perk up and goes back to the room to await the grand finale. Only a few minutes later...I once again am retrieved from the audience. This time, I am not so sure it is a real problem, so I just keep her and let her sit on my lap.
The next morning, getting ready for church, she comes down the stairs and says her legs feel funny. Um, funny how...do they hurt? ache? feel heavy? They feel heavy. Why does this feel like Groundhog Day?
Tuesday I spoke with Dr. T and she informed me that they were ordering a new MRI for Caroline to see what happens to her brain stem when she bends her head back and forth. She doesn't appear to have a Chiari, but the basilar invagination is distinctly possible.
So I was determined to show her MRI to Dr. C here in Cinci. Only I forgot it. (I obviously lacked some organization heading into this trip!) Billy managed to upload it, Will downloaded it and printed it on a CD, and I handed it to Mimi and Dr. C.
Essentially...Will's MRI looks pretty much the same as in November after the procedure. There is still a flattened area that they hoped would become a little more round. At this point, they will perform an MRI in a year and see what it looks like then. This finding would pretty much agree with Dr. Cohen in that the brain stem is permanently damaged. Not news I want to hear, but neither is it surprising.
He looked at Caroline's MRI and agreed that we need the second MRI with flexion and extension. His conclusion is that the Chiari issue is still in question because the bone structure used to measure the presence of a Chiari was not well defined. The real issue was the brain stem. There is evidence of cervical instability (the cervical spine is not stable) and the brain stem looks like it may indeed be compressed like Will's...just not as badly and for a shorter duration. So, he believes she will need to have her first few vertebrae fused like William's, and the need for a chiari decompression or a transoral odontoidectomy is still unknown.
So, my beautiful ballerina does appear to be trekking down a similar path as William. Am I in a panic over that? No. Am I sad? Yes. I have cried buckets this week. But we do have a sovereign God, we do have amazing doctors, and we are catching this early. Will that change her outcome? No clue. Since we don't know how much of Will's issues are mito and how much are brain stem issues, then we have no way to project how Caroline will progress. But we can be thankful for today and for ballet recitals and fluffy, sparkly tutus that bring joy to her which in turn brings joy to us.
Monday, June 27, 2011
Sorrow, Take 2
Sometimes when you have been running a while, you want to stop and catch your breath. But once you do, it can be difficult to start running again. You can find plenty of reasons to walk or quit. An object in motion tends to stay in motion. An object at rest tends to remain, well, at rest.
So for me, a respite isn't always all that helpful. Yes, the peace is lovely. The slower pace is heavenly. But the knowledge of what I have to return to is not so helpful or lovely. The emotional rests is amazing, but in 36 hours, I will be back on the front lines where the fighting is most intense.
I love my family. I miss them when I am not with them. I miss the hugs and the kisses goodnight, I even miss Chris's OCD need to know exactly what is going on tomorrow. What I don't miss is the survivor mentality.
A while back I wrote about the whole survival mentality. When a natural disaster occurs, typically what you see are people trampling their neighbors to obtain food and water. The same thing happens within a family who lives in constant crisis mode. The kids trample one another to obtain what they emotionally need, the couple are intensely focused on different things, and the whole concept of teamwork is literally thrown out the window.
I am not suggesting that my familly is trampling one another. But the teamwork is definitely gone, and the level of angst is definitely at an all time high. The question is, now what. Where do we go from here and how do we help the kids develop healthy coping skills while trying to still deal with a spouse who is also struggling.
When I was told that 70-80% of marriages with a chronically ill child end in divorce, I was shocked and incredibly prideful. There was no way that was happening to us. But here we are three years later, and the entire family is struggling. There is not a relationship that is not affected. And when you are stressed, then generally your best foot is not put forward. So the struggle escalates.
The question is...what now. I have no answer...so we continue to get up in the morning and work all day and fall into bed exhausted at night, knowing that tomorrow brings another day. Is that fatalistic? Probably a little. But it is more a case of not knowing what else to do.
So we cry...a lot and we realize that “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” (Washington Irving) and we continue to look for solutions, all the while praying that the Lord would work out His plan for our family and give us the strength we need to manage whatever comes next.
So for me, a respite isn't always all that helpful. Yes, the peace is lovely. The slower pace is heavenly. But the knowledge of what I have to return to is not so helpful or lovely. The emotional rests is amazing, but in 36 hours, I will be back on the front lines where the fighting is most intense.
I love my family. I miss them when I am not with them. I miss the hugs and the kisses goodnight, I even miss Chris's OCD need to know exactly what is going on tomorrow. What I don't miss is the survivor mentality.
A while back I wrote about the whole survival mentality. When a natural disaster occurs, typically what you see are people trampling their neighbors to obtain food and water. The same thing happens within a family who lives in constant crisis mode. The kids trample one another to obtain what they emotionally need, the couple are intensely focused on different things, and the whole concept of teamwork is literally thrown out the window.
I am not suggesting that my familly is trampling one another. But the teamwork is definitely gone, and the level of angst is definitely at an all time high. The question is, now what. Where do we go from here and how do we help the kids develop healthy coping skills while trying to still deal with a spouse who is also struggling.
When I was told that 70-80% of marriages with a chronically ill child end in divorce, I was shocked and incredibly prideful. There was no way that was happening to us. But here we are three years later, and the entire family is struggling. There is not a relationship that is not affected. And when you are stressed, then generally your best foot is not put forward. So the struggle escalates.
The question is...what now. I have no answer...so we continue to get up in the morning and work all day and fall into bed exhausted at night, knowing that tomorrow brings another day. Is that fatalistic? Probably a little. But it is more a case of not knowing what else to do.
So we cry...a lot and we realize that “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” (Washington Irving) and we continue to look for solutions, all the while praying that the Lord would work out His plan for our family and give us the strength we need to manage whatever comes next.
Saturday, June 25, 2011
Where's the Pump???
We headed off to Cincinnati amidst headwinds of 65 knots and lots of storm build up. We can't go over the storms due to their height, so we have to vector around them. At one point, looking out the window, it looked like we were surrounded by mountains of clouds. It was beautiful, but incredibly stressful for Charlie.
As a result of the head winds, the entire flight took significantly longer than normal. Charlie needed to let the storms die down before heading home, so he went to Dewey's Pizza with us, then off to the Riggs's to unpack and let Will rest. It had been a long day.
After returning Charlie to his plane, I headed to the grocery store, then back to Will to start an IV...only to discover that I had forgotten our IV pump. With a port, you have to use a pump; you can't run the IV by gravity, so we were totally stuck. Of all the things to forget, this was probably the worst.
So Friday morning, Will isn't ready for an ER, but he certainly is not looking great. Our IV company at home graciously agrees to overnight us a new pump, so now all I have to do is figure out how to get him safely through his MRI, the day, and the night without needing to go to the ER.
We had a long talk about how much Powerade Zero he would have to drink in order to compensate for the lack of fluids. And he would have to eat. There were no guarantees that he would avoid the hospital, but he would have to be the one to put forth the effort if he wanted to avoid it.
We were very fortunate that the weather here was cool and fairly dry which is significantly easier on him than the heat and humidity back home. He was able to hang out with his buddy, Chris, after his MRI, but that visit centered around the computer, so it was not physically stressful. By last night, he had done a phenomenal job of drinking and eating as he should, and while it went against my better judgement, we stayed home and did not head to the ER. The pump arrived safely this morning, and he has had fluids all day to try to catch up. He still looks pretty rough, but better than he did this morning. I am so grateful to our IV company for being so gracious and overnighting the pump to us.
This morning I was blessed with a long walk and chat with Becky G and yet more time with Becky R. It is such a gift to know that we have a second home and family who love us here in Cinci. Will slept through almost all of that, but tomorrow he gets to arise with us mere mortals and attend church.
We see Dr. C on Monday to review the results of the MRI and determine what state the brain stem is now in.
Thursday, June 23, 2011
I'm Leaving on a Small Plane...then a BIG Plane
Will and I head back out in the morning (today by the time most of you read this) for Cincinnati. He has an MRI on Friday morning and then Monday morning, we see Dr. C, the neurosurgeon. Hopefully, he will state that the brain stem looks lovely and no more surgeries will be required. If all goes well, we will fly home on Tuesday.
Just as a quick aside...in the past year, we've been blessed with a large assortment of gift cards to restaurants, book stores, and Visa gift cards. The generosity of those who love and pray for us astounded us. As I am packing the last of those cards tonight, I am once again reminded of just how much we are loved. So thank you for the encouragement and the physical support that so many of you provided.
The most heard question at this point is, "How is Will?" That is such a tough question to answer. If you look at him, he looks well. His blood pressure is moderately stable. But all he's really doing is sitting on the sofa with his computer. He is receiving IV fluids on average every 36 hours.
Which brings us to the big plane...Make-A-Wish has called, and Will's wish is ready to go. We depart on July 6 for the Keys and return July 11. Jervetta, our Make-A-Wish representative, is coming Wednesday night to reveal the details of the wish. Will is psyched. The kids are psyched. And I'm psyched and worried.
Will does not tolerate a lot of physical activity, travel, or heat. Anything that requires energy has the potential to create a crash. That being said, the travel to the Keys, kayaking, and snorkeling (where not only is he swimming...exercising with resistance...but his body has to warm itself in the water) are all huge energy drains. So my job in all of this is to contemplate how much we need in terms of medical supplies. When we travel, we typically carry one bag of IV fluid for each day we are gone. For this trip, we'll carry two for each day, knowing that the potential for a massive crash exists but praying that it doesn't happen.
I need to pack for tomorrow, hopefully pull Will's IV soon, and head to bed.
Just as a quick aside...in the past year, we've been blessed with a large assortment of gift cards to restaurants, book stores, and Visa gift cards. The generosity of those who love and pray for us astounded us. As I am packing the last of those cards tonight, I am once again reminded of just how much we are loved. So thank you for the encouragement and the physical support that so many of you provided.
The most heard question at this point is, "How is Will?" That is such a tough question to answer. If you look at him, he looks well. His blood pressure is moderately stable. But all he's really doing is sitting on the sofa with his computer. He is receiving IV fluids on average every 36 hours.
Which brings us to the big plane...Make-A-Wish has called, and Will's wish is ready to go. We depart on July 6 for the Keys and return July 11. Jervetta, our Make-A-Wish representative, is coming Wednesday night to reveal the details of the wish. Will is psyched. The kids are psyched. And I'm psyched and worried.
Will does not tolerate a lot of physical activity, travel, or heat. Anything that requires energy has the potential to create a crash. That being said, the travel to the Keys, kayaking, and snorkeling (where not only is he swimming...exercising with resistance...but his body has to warm itself in the water) are all huge energy drains. So my job in all of this is to contemplate how much we need in terms of medical supplies. When we travel, we typically carry one bag of IV fluid for each day we are gone. For this trip, we'll carry two for each day, knowing that the potential for a massive crash exists but praying that it doesn't happen.
I need to pack for tomorrow, hopefully pull Will's IV soon, and head to bed.
Friday, June 3, 2011
I Do Not Do Sick Well
I do sick fine, actually. As long as it's someone else who's sick. Me sick? Not so patient.
I arrived home from Ohio with a roaring bacterial infection and a virus. Not just any virus, but the virus that spawned from the pits of hell. So, I have been in my bed, under the weather, and unable to eat for days. Coxsackie is in the family with chickenpox, but instead of itchy sores all over your body, you get lotsa blisters in your mouth and in the back of your throat.
So rather than just taking to my bed the first few days, I decided instead to just deny that I was sick. Really, I am fine. Which proceeded to, "Ok. I am sick, but I can still move, so I will be fine." which proceeded to, "Would somebody please shoot me and put us all out of my misery?"
So last night, when passing out from lack of food was deemed imminent, I returned to the doctor and basically begged for lidocaine in a mouthwash. The doctor took one look in my mouth and went, "Wow. Nice job." Yes, I am a perfectionist and try to do everything to the utmost perfectness, including getting really sick with this virus. I grew lotsa big, beautiful blisters. He provided warnings galore including, "If you swallow this, you will have seizures and it can be fatal." No problem. Without it I may have seizures from the pain and would prefer to be dead.
Now that this heinous virus has a name, google became Billy's friend. He decided that I really should be quarantined, so here I am in my bed, alone, with my computer, my knitting, a book, and a DVD player and after yet another nap, have decided that I may feel human enough to use the computer. I am considered contagious until the last blister pops and scabs over. (Doesn't that sound lovely?!) So if I exposed anyone to this virus unintentionally yesterday, I do apologize. When the fever broke, I presumed that I was no longer a menace to society...and without regular caloric intake, you would feel pretty crummy too...so I figured that just was part of the recovery.
So now that I have unlimited time on my hands, I may actually take time to update the blog and regale you with more information than you wanted. But right now, I think it is time for another nap...
I arrived home from Ohio with a roaring bacterial infection and a virus. Not just any virus, but the virus that spawned from the pits of hell. So, I have been in my bed, under the weather, and unable to eat for days. Coxsackie is in the family with chickenpox, but instead of itchy sores all over your body, you get lotsa blisters in your mouth and in the back of your throat.
So rather than just taking to my bed the first few days, I decided instead to just deny that I was sick. Really, I am fine. Which proceeded to, "Ok. I am sick, but I can still move, so I will be fine." which proceeded to, "Would somebody please shoot me and put us all out of my misery?"
So last night, when passing out from lack of food was deemed imminent, I returned to the doctor and basically begged for lidocaine in a mouthwash. The doctor took one look in my mouth and went, "Wow. Nice job." Yes, I am a perfectionist and try to do everything to the utmost perfectness, including getting really sick with this virus. I grew lotsa big, beautiful blisters. He provided warnings galore including, "If you swallow this, you will have seizures and it can be fatal." No problem. Without it I may have seizures from the pain and would prefer to be dead.
Now that this heinous virus has a name, google became Billy's friend. He decided that I really should be quarantined, so here I am in my bed, alone, with my computer, my knitting, a book, and a DVD player and after yet another nap, have decided that I may feel human enough to use the computer. I am considered contagious until the last blister pops and scabs over. (Doesn't that sound lovely?!) So if I exposed anyone to this virus unintentionally yesterday, I do apologize. When the fever broke, I presumed that I was no longer a menace to society...and without regular caloric intake, you would feel pretty crummy too...so I figured that just was part of the recovery.
So now that I have unlimited time on my hands, I may actually take time to update the blog and regale you with more information than you wanted. But right now, I think it is time for another nap...
Wednesday, May 25, 2011
Dr. C Today
This morning, Will and I drove to Akron to finally see Dr. C, mito guru extraordinaire. This is the doctor who discovered the basilar invagination (brain stem compression) and sent us to Cincinnati in December of 2009. When we walked in, he totally remembered us. I was surprised given that he sees thousands of patients, but his statement was that it would be impossible for him to not remember us given that the brain stem compression was so severe and the initial Chiari was so huge.
That led him to the comment that said, "You do realize that when someone was hanged, the odontoid (the bony structure removed this past November to finally release the pressure from the brain stem) is pushed into the brain stem and that is what kills the person." Hmmm....nope. I didn't know that. He went on to say that he had no idea how Will had been walking and talking prior to this last surgery given the significance of the compression and that a fender bender could have killed him. He was relieved that the surgery was so successful and totally sang the other Dr. C's praises.
Well, when we Colemans do something, we don't do it halfway.
Which brought us to the whole mito question...Essentially, the mito testing done in Atlanta covers only a couple of possible genetic flaws that are responsible for Mitochondrial Myopathy. There is a new test coming out in the next couple of months that will test for up to 400 possible locations where the genetic error may occur. So while Dr. S in Atlanta was unable to locate the exact location of the defect, Dr. C in Akron is convinced that we may find it with this new test.
However, his belief is that the majority of the autonomic instability is a direct result of the brain stem injury. Which means that Will's brain stem was too compressed for too long and as a result, it is not going to recover. The actual management of Will doesn't change with this possible shift in primary diagnosis. The symptoms are handled identically. The significance lies in prognosis. With POTS or Mito, there is a significant chance of improvement in Will's 20's. If indeed the majority of the symptoms are a direct result of brain stem compression, then essentially the prognosis remains more murky. This is not going to go away.
The rapid progression is the remaining question mark as to which is primary...brain stem or mito. This is the reason for continuing to pursue the genetic component of the mito. That finding would also have significance for future family members (grandchildren).
So what are we doing? When I return home, the first order of business is to apply for a Medicaid Waiver so Will can enter rehab. By slowly improving his muscle tone and endurance, the body can utilize the larger muscles to assist the neuro-muscular system that is not functioning properly right now. But that is a painfully slow process and our insurance only covers 20 physical therapy visits a year. The Medicaid Waiver would allow him unlimited therapy services. Dr. C was adament that the rehab needed to occur in a medical facility so that rapid assistance would be available. I really have no idea how we are gonna manage this one, but this is essentially the only hope we currently have for improvement. Even so, the best we can expect is maybe a 20% improvement, but right now, I will happily do whatever is required for that 20%.
He did remind me that the heat of summer is going to make hydration significantly more challenging for William and that his need for infusions will likely increase. Yep, I am on that already...especially with the Make-A-Wish trip in the Keys looming.
I realize that this is a quick information dump, but I am literally falling asleep at the computer. The weather for our trip home is still iffy, but as of tonight, Charlie and Matt think it will clear enough that we can fly later on Friday. Today's drive and activity was obviously a bit much for William, so tomorrow is another round of IV fluids and a quiet, restful day. The storms here tonight have been severe, so quiet sounds pretty lovely right now.
That led him to the comment that said, "You do realize that when someone was hanged, the odontoid (the bony structure removed this past November to finally release the pressure from the brain stem) is pushed into the brain stem and that is what kills the person." Hmmm....nope. I didn't know that. He went on to say that he had no idea how Will had been walking and talking prior to this last surgery given the significance of the compression and that a fender bender could have killed him. He was relieved that the surgery was so successful and totally sang the other Dr. C's praises.
Well, when we Colemans do something, we don't do it halfway.
Which brought us to the whole mito question...Essentially, the mito testing done in Atlanta covers only a couple of possible genetic flaws that are responsible for Mitochondrial Myopathy. There is a new test coming out in the next couple of months that will test for up to 400 possible locations where the genetic error may occur. So while Dr. S in Atlanta was unable to locate the exact location of the defect, Dr. C in Akron is convinced that we may find it with this new test.
However, his belief is that the majority of the autonomic instability is a direct result of the brain stem injury. Which means that Will's brain stem was too compressed for too long and as a result, it is not going to recover. The actual management of Will doesn't change with this possible shift in primary diagnosis. The symptoms are handled identically. The significance lies in prognosis. With POTS or Mito, there is a significant chance of improvement in Will's 20's. If indeed the majority of the symptoms are a direct result of brain stem compression, then essentially the prognosis remains more murky. This is not going to go away.
The rapid progression is the remaining question mark as to which is primary...brain stem or mito. This is the reason for continuing to pursue the genetic component of the mito. That finding would also have significance for future family members (grandchildren).
So what are we doing? When I return home, the first order of business is to apply for a Medicaid Waiver so Will can enter rehab. By slowly improving his muscle tone and endurance, the body can utilize the larger muscles to assist the neuro-muscular system that is not functioning properly right now. But that is a painfully slow process and our insurance only covers 20 physical therapy visits a year. The Medicaid Waiver would allow him unlimited therapy services. Dr. C was adament that the rehab needed to occur in a medical facility so that rapid assistance would be available. I really have no idea how we are gonna manage this one, but this is essentially the only hope we currently have for improvement. Even so, the best we can expect is maybe a 20% improvement, but right now, I will happily do whatever is required for that 20%.
He did remind me that the heat of summer is going to make hydration significantly more challenging for William and that his need for infusions will likely increase. Yep, I am on that already...especially with the Make-A-Wish trip in the Keys looming.
I realize that this is a quick information dump, but I am literally falling asleep at the computer. The weather for our trip home is still iffy, but as of tonight, Charlie and Matt think it will clear enough that we can fly later on Friday. Today's drive and activity was obviously a bit much for William, so tomorrow is another round of IV fluids and a quiet, restful day. The storms here tonight have been severe, so quiet sounds pretty lovely right now.
Tuesday, May 24, 2011
Sorrow
When we travel to the doctors we see only twice a year, it causes me to focus on where William was last time we saw this particular physician. Last year, when we saw Dr. G in Toledo, William was receiving normal saline once a week and I had just started accessing his port. Here we are a year later, and he is receiving dextrose in his IV along with supplements to help the mito function more efficiently and he is receiving 3-7 IV's per week.
Dealing with the progression on a daily basis, you don't always see it. It is sort of like getting to the end of the summer and realizing that your teenage son grew six inches, but because you live with him, you don't recognize the full extent of his growth until he tries to put on a pair of jeans that fit him at the end of the school year.
Last night, one of our pilots who lives nearby was playing chess with William and ended up going out to dinner with us. But while they were occupied, I pulled out a box full of IV supplies and started sorting. Charlie took a look at the piles of stuff and asked if that was a month's worth of supplies. I laughed, and thought, "Why would I bring a month's worth of supplies?" when I realized that he really had no idea. I explained that it was nine days of supplies, and his eyes got huge. "No wonder you have so much stuff when you fly." He really hadn't realized that 90% of what he sees when we fly IS medical supplies and we really do ship a 40lb box of clothes and school books every time we take an Angel Flight. I had told him, but he hadn't really understood.
But that whole conversation and the reflections of what was a year ago, once again made me realize how far William has progressed and caused me to ponder the summer. Where will he be in three months? I just submitted possible dates for our Make-A-Wish trip, but in the back of my mind I wonder how he is going to handle it. Will he be able to snorkel without ending up in the hospital? Will the energy required for that trip cause him to have yet another lower baseline? How do we give him that week and not lose ground?
I know this is progressive. I know that the future is uncertain. But the grief of today can be overwhelming, knowing that there is more to come. I came across a quote this morning by Kalil Gibran that said, "When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." So true.
Dealing with the progression on a daily basis, you don't always see it. It is sort of like getting to the end of the summer and realizing that your teenage son grew six inches, but because you live with him, you don't recognize the full extent of his growth until he tries to put on a pair of jeans that fit him at the end of the school year.
Last night, one of our pilots who lives nearby was playing chess with William and ended up going out to dinner with us. But while they were occupied, I pulled out a box full of IV supplies and started sorting. Charlie took a look at the piles of stuff and asked if that was a month's worth of supplies. I laughed, and thought, "Why would I bring a month's worth of supplies?" when I realized that he really had no idea. I explained that it was nine days of supplies, and his eyes got huge. "No wonder you have so much stuff when you fly." He really hadn't realized that 90% of what he sees when we fly IS medical supplies and we really do ship a 40lb box of clothes and school books every time we take an Angel Flight. I had told him, but he hadn't really understood.
But that whole conversation and the reflections of what was a year ago, once again made me realize how far William has progressed and caused me to ponder the summer. Where will he be in three months? I just submitted possible dates for our Make-A-Wish trip, but in the back of my mind I wonder how he is going to handle it. Will he be able to snorkel without ending up in the hospital? Will the energy required for that trip cause him to have yet another lower baseline? How do we give him that week and not lose ground?
I know this is progressive. I know that the future is uncertain. But the grief of today can be overwhelming, knowing that there is more to come. I came across a quote this morning by Kalil Gibran that said, "When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." So true.
Monday, May 23, 2011
Absence Makes the Heart Grow Fonder?
I know there have been large gaps in the blogging lately. Part of that has been limited internet where we are staying. At home, I hardly sit down, so blogging takes a back seat to the rest of life. And part of it is my own mental state. You have to be able to communicate effectively and I have been exhausted both physically and emotionally as of late, so I have kind of circled the wagons and kept to myself.
That being said...I am currently in the Toledo area with Will. Our Angel Flight was canceled due to weather, so we left very quickly Tuesday evening so we could break the drive into two days. The weather was ugly, but we arrived safely.
We have a couple of doctor appointments that are days apart, so I find myself with all kinds of down time and I am truly at whit's end. I dream of down time but now that I have it I have no clue how to handle it. :) We are in a little township that is very laid back, so it has made for fabulous running opportunities which really does help. William sleeps til noon, so I awaken around 7, listen to the cars outside, then finally get up and run...then I either walk to the coffee shop a couple of blocks away or the cafe across the street for breakfast. It has been lovely to be able to walk everywhere and to not have to drive a bazillion miles! I could get used to this. :)
As for the rest...here's a quick update.
Will is not handling the trip all that well, but it could be worse. He is getting IV's not quite every day. He should get them every day, but it is a fine line you walk with a 14 yo who does not wish to deal with the daily encumbrance.
I did run the half marathon a week ago. It was truly a monumental experience. When they say running is a mental sport, it is absolutely true. I owe a huge debt of gratitude to the coaches at my local running store, to Billy for watching the kids twice a week so I could join the group runs, and to KT who started and ended it with me...and who fed me afterward so I wouldn't pass out. Will I run another? I hope so. Stay tuned for more info on that...KT is working on a fund raising effort to raise awareness for mitochondrial disease. As soon as all of those details are worked out I will pass them along.
Caroline finally had her MRI last week. We are still waiting on the results. I had hoped to get a call last week, so tomorrow will be another call to the doctor's office.
As the school year draws to an end, we are scrounging for answers on how to handle next year. The little guys will most likely not return to their current school, so we have to make some significant decisions...the options are not all that great, so it is a huge challenge.
Thank you for your patience with me as I deal with the insanity of life and occasionally take a break from the outside world. I deeply appreciate your understanding and your prayers as things get a bit crazy and I find insufficient time to update the blog.
That being said...I am currently in the Toledo area with Will. Our Angel Flight was canceled due to weather, so we left very quickly Tuesday evening so we could break the drive into two days. The weather was ugly, but we arrived safely.
We have a couple of doctor appointments that are days apart, so I find myself with all kinds of down time and I am truly at whit's end. I dream of down time but now that I have it I have no clue how to handle it. :) We are in a little township that is very laid back, so it has made for fabulous running opportunities which really does help. William sleeps til noon, so I awaken around 7, listen to the cars outside, then finally get up and run...then I either walk to the coffee shop a couple of blocks away or the cafe across the street for breakfast. It has been lovely to be able to walk everywhere and to not have to drive a bazillion miles! I could get used to this. :)
As for the rest...here's a quick update.
Will is not handling the trip all that well, but it could be worse. He is getting IV's not quite every day. He should get them every day, but it is a fine line you walk with a 14 yo who does not wish to deal with the daily encumbrance.
I did run the half marathon a week ago. It was truly a monumental experience. When they say running is a mental sport, it is absolutely true. I owe a huge debt of gratitude to the coaches at my local running store, to Billy for watching the kids twice a week so I could join the group runs, and to KT who started and ended it with me...and who fed me afterward so I wouldn't pass out. Will I run another? I hope so. Stay tuned for more info on that...KT is working on a fund raising effort to raise awareness for mitochondrial disease. As soon as all of those details are worked out I will pass them along.
Caroline finally had her MRI last week. We are still waiting on the results. I had hoped to get a call last week, so tomorrow will be another call to the doctor's office.
As the school year draws to an end, we are scrounging for answers on how to handle next year. The little guys will most likely not return to their current school, so we have to make some significant decisions...the options are not all that great, so it is a huge challenge.
Thank you for your patience with me as I deal with the insanity of life and occasionally take a break from the outside world. I deeply appreciate your understanding and your prayers as things get a bit crazy and I find insufficient time to update the blog.
Monday, May 9, 2011
Wishful Thinking
Will is officially off of medical hold for Make-A-Wish Foundation and they are working on planning his wish. It was originally supposed to be in Hawaii, but the concern over how to safely get him there has prompted a change to the Florida Keys. He wants to snorkel and kayak.
Thursday, week before last, Will swam for about half an hour while the littles had swim club. I was swimming laps in the pool while he kinda messed around. He really wasn't swimming as much as he was walking and playing. But by the time we got home, his resting heart rate was 130 and his diastolic pressure was in the 40's. We started an IV in what ended up being a long line of IV's.
Essentially, he had 8 IV's in a ten day period. He ended up catching a cold as well, so the combination of swimming and illness was too much. I probably should have taken him to MCV last Tuesday. He slowly improved, but it has prompted a whole host of questions.
If being in a pool for less than half an hour crashed him, how is he going to snorkel? We have started him in physical therapy, but I have no idea how effective it will be and the risk of it creating more crashes is a very real possibility. How do we handle his wish as well as keep him healthy?
As a side note...Next Wednesday Will and I head to Toledo for 9 days. We only have two doctor appointments, but the fact that they are in cities two hours from one another and the fact that traveling is so hard on William, we have opted to stay in Ohio. We are actually going to stay in a bed and breakfast because it was the same cost as the hotel, but it gives us two bedrooms instead of one. (Traveling with a snoring 14 year old gets really old when you spend hours in the same hotel room!) The owners are providing an additional dorm sized fridge since we will be traveling with 11 1.5 liter bags of fluids, but they wanted us to be able to store food as well. That is a huge blessing. I have no clue how we will manage all of this both financially and with Billy's long work hours, but the idea of traveling twice is not appealing at all due to the toll on William who is obviously struggling.
Thursday, week before last, Will swam for about half an hour while the littles had swim club. I was swimming laps in the pool while he kinda messed around. He really wasn't swimming as much as he was walking and playing. But by the time we got home, his resting heart rate was 130 and his diastolic pressure was in the 40's. We started an IV in what ended up being a long line of IV's.
Essentially, he had 8 IV's in a ten day period. He ended up catching a cold as well, so the combination of swimming and illness was too much. I probably should have taken him to MCV last Tuesday. He slowly improved, but it has prompted a whole host of questions.
If being in a pool for less than half an hour crashed him, how is he going to snorkel? We have started him in physical therapy, but I have no idea how effective it will be and the risk of it creating more crashes is a very real possibility. How do we handle his wish as well as keep him healthy?
As a side note...Next Wednesday Will and I head to Toledo for 9 days. We only have two doctor appointments, but the fact that they are in cities two hours from one another and the fact that traveling is so hard on William, we have opted to stay in Ohio. We are actually going to stay in a bed and breakfast because it was the same cost as the hotel, but it gives us two bedrooms instead of one. (Traveling with a snoring 14 year old gets really old when you spend hours in the same hotel room!) The owners are providing an additional dorm sized fridge since we will be traveling with 11 1.5 liter bags of fluids, but they wanted us to be able to store food as well. That is a huge blessing. I have no clue how we will manage all of this both financially and with Billy's long work hours, but the idea of traveling twice is not appealing at all due to the toll on William who is obviously struggling.
Wednesday, April 27, 2011
A Trek through Target with William
Will had an IV last night that finished about 2 this morning. I let him sleep in, took him to science and geography, then dropped him off with Erlene while I hung out with the littles at baseball practice. I was in the Jeep, so I had to take the littles home, then go back for William.
When I picked him up, he was looking pretty rough. He needs yet another IV. He said he was ok with Target, so I dropped in to pick up two items. While there, he was determined to go look at the mountain bikes. The child just wants a mountain bike.
Last year for his birthday (August), he asked for two items...a computer and a mountain bike. There was no way I was going to give him a bike that he was totally unable to use for who knew how long (turns out almost a year), so we gave him a low end laptop that has been a lifeline to him.
But now the brace is off, he is allowed to ride (but not fall), and he is so excited. We have yet another trip to Ohio next month (this time Toledo, so we have a hotel, rental car, and food to manage), so buying a bike isn't on the list. So we talk about maybe later this summer, and we head home.
In the car, we are talking about biking and the fact that Andrew wants a mountain bike too, and Will thinks it's so cool to ride trails with his brother. He kinda sighed and said that he knew it would be a while before he could do that 'cause he was so weak.
The conversation moves to the impending trip and the fact that we may be able to utilize a bed and breakfast that has a full kitchen, which would help with all of the IV fluid that needs refrigeration and we could cook which saves money. But that means driving to Akron for one of the appointments. He said that he has been to Charlottesville, about the same distance, and he handled it fine.
That was the trip where he had a virus, totally crashed, and was in the hospital the next day for five days. He said he feels like he may be better than he was in October, and I'm shocked. The child went from two IV's a week of normal saline (basically salt water), to four or five IV's a week that have not only salt, but sugar, and now we are adding in Levocarnitine (helps the body make energy), and he's not exactly holding between IV's and definitely not holding if he is active at all.
He so wants to be better, but he isn't. He wants to be a normal kid. But he isn't. I just want to give him a normal life, but I can't. And I'm sitting here crying because he really doesn't understand the severity of the situation and I don't have the heart to tell him...
When I picked him up, he was looking pretty rough. He needs yet another IV. He said he was ok with Target, so I dropped in to pick up two items. While there, he was determined to go look at the mountain bikes. The child just wants a mountain bike.
Last year for his birthday (August), he asked for two items...a computer and a mountain bike. There was no way I was going to give him a bike that he was totally unable to use for who knew how long (turns out almost a year), so we gave him a low end laptop that has been a lifeline to him.
But now the brace is off, he is allowed to ride (but not fall), and he is so excited. We have yet another trip to Ohio next month (this time Toledo, so we have a hotel, rental car, and food to manage), so buying a bike isn't on the list. So we talk about maybe later this summer, and we head home.
In the car, we are talking about biking and the fact that Andrew wants a mountain bike too, and Will thinks it's so cool to ride trails with his brother. He kinda sighed and said that he knew it would be a while before he could do that 'cause he was so weak.
The conversation moves to the impending trip and the fact that we may be able to utilize a bed and breakfast that has a full kitchen, which would help with all of the IV fluid that needs refrigeration and we could cook which saves money. But that means driving to Akron for one of the appointments. He said that he has been to Charlottesville, about the same distance, and he handled it fine.
That was the trip where he had a virus, totally crashed, and was in the hospital the next day for five days. He said he feels like he may be better than he was in October, and I'm shocked. The child went from two IV's a week of normal saline (basically salt water), to four or five IV's a week that have not only salt, but sugar, and now we are adding in Levocarnitine (helps the body make energy), and he's not exactly holding between IV's and definitely not holding if he is active at all.
He so wants to be better, but he isn't. He wants to be a normal kid. But he isn't. I just want to give him a normal life, but I can't. And I'm sitting here crying because he really doesn't understand the severity of the situation and I don't have the heart to tell him...
Friday, April 22, 2011
The Not So Good Kind of Tired
A couple of years ago I wrote two articles for a magazine about homeschooling with a chronically ill child. They were written from the heart and explained the challenges that we were currently trying to manage.
Well, here we are two years later, and those challenges certainly have not minimized. If anything, some of them are even more difficult. We have a $10,000 total out of pocked medical expense that was met in February, so the medical bills continue to mount. The travel expenses are often minimized thanks to amazing friends in Cincinnati, but trips to other cities (like Akron and Toledo this coming May) mean hotels and rental cars and food. But as difficult as the financial side seems to feel, the real challenge is the relationships within the family.
Today, Will and I flew home from Cincinnati. It had been a really restful, encouraging trip. Is Will better? No. Is he going to get better? We have no idea, but if he does, it won't be for years. So while Cincinnati did not alleviate medical issues, we were blessed with this huge respite...which made the arrival home all the more challenging which, I realize, seems like an odd statement.
But after experiencing multiple days of peace and tranquility, the disharmony here just screamed at me. Almost every relationship is struggling, and I just seem incapable of knowing how to help any of them. While they fought their way through the day, I found myself more and more wanting to curl up into a tiny ball and hide. Is that gonna help? Obviously not. But how to help evades me. I am exhausted and lost and barely holding on to that fraying rope. Is there hope? Yes. Do I currently see it? Nope. Not the best place to be...
Well, here we are two years later, and those challenges certainly have not minimized. If anything, some of them are even more difficult. We have a $10,000 total out of pocked medical expense that was met in February, so the medical bills continue to mount. The travel expenses are often minimized thanks to amazing friends in Cincinnati, but trips to other cities (like Akron and Toledo this coming May) mean hotels and rental cars and food. But as difficult as the financial side seems to feel, the real challenge is the relationships within the family.
Today, Will and I flew home from Cincinnati. It had been a really restful, encouraging trip. Is Will better? No. Is he going to get better? We have no idea, but if he does, it won't be for years. So while Cincinnati did not alleviate medical issues, we were blessed with this huge respite...which made the arrival home all the more challenging which, I realize, seems like an odd statement.
But after experiencing multiple days of peace and tranquility, the disharmony here just screamed at me. Almost every relationship is struggling, and I just seem incapable of knowing how to help any of them. While they fought their way through the day, I found myself more and more wanting to curl up into a tiny ball and hide. Is that gonna help? Obviously not. But how to help evades me. I am exhausted and lost and barely holding on to that fraying rope. Is there hope? Yes. Do I currently see it? Nope. Not the best place to be...
Monday, April 18, 2011
The Good Kind of Tired
While we have only had two doctor appointments so far since arriving in Cincinnati, I have still had a bit of a crazy schedule. But it's been a good crazy.
Friday Will hung out with his friend, Chris for a few hours, then we saw Dr. Crawford. He was pleased with the progress visible on the CT scan images, so he said Will could come out of the brace...after he gave Will a hard time for not wearing it for the last week. Will smiled sheepishly and Dr. Crawford told him that he could swim recreationally, but not as a sport. Anything with impact, contact, or jarring is not ok so flip turns and diving are not ok. Will is ecstatic. Time to go buy the boy a swimsuit!
Will has been "medical hold" for Make-A-Wish Foundation for the last nine months. Since the brace is off, we can remove that hold and move forward on his wish. I told Katie, our case manager, that I would call her Monday morning and let her know how the appointment went. She is supposed to be restarting the paperwork...
Saturday morning I ran with some friends here who run way faster than I do. It was just a really good run with a good friend as long as I didn't try to talk. Afterward, we went to the church workday. It was rainy and cold and there were 12 cubic yards of mulch to move. We were still in our running clothes, which means I was also wearing a baseball cap since it was raining and praying no one would recognize me. One of the women asked me if I was new or just visiting. I laughed and said, "Both." After talking for a few minutes, she realized who I was...and stated that I look so different. I laughed. You would too if you ran almost five miles, got rained on, and then moved a bunch of mulch. I was very happy to grab a shower and put on warm, dry clothes.
Becky R and I ran a few errands, baked banana bread, and made cookie dough while Will had yet another IV. It was such a great day. I was thoroughly exhausted by the time it was over, but it was a good exhausted. I had spend time with good friends, accomplished something, and even got a great run in.
Today, we went to church, then Will and I headed to the Reds' game. Thursday after Will's CT scan, we dropped into Guest Services at the hospital to see Kim. She saw us, threw her arms up and said, "Unbelievable! We just got Reds tickets for Sunday and I can't imagine anyone whom I would like to give them to more than you!" Will was thrilled, I was thrilled, and so today we got to go. In the sun, it was cool but where we were sitting there was total shade and a steady breeze. It was so cold. The end of the game was a nail biter, and we ended up losing, but it was a great afternoon.
We got back to the Riggs's house just in time for covenant group. Will really needed fluids, so we started yet another IV and then I joined the adults while Will bonded with his computer.
It has been a total whirlwind of a few days, but it has been so good. Will got to hang out with a friend from church with whom he chats online, and he attended a baseball game. He gets to do it all again tomorrow. I have not seen him smile this much in months. He has needed an insane amount of fluids, IV's almost every day, but it has been so encouraging to him. I am totally amazed at how well we are cared for here in Cinci. It is amazing to have a real home away from home...and friends who welcome you back as if you were never gone. How do people manage daily life, much less crisis, without the body of Christ?
Friday Will hung out with his friend, Chris for a few hours, then we saw Dr. Crawford. He was pleased with the progress visible on the CT scan images, so he said Will could come out of the brace...after he gave Will a hard time for not wearing it for the last week. Will smiled sheepishly and Dr. Crawford told him that he could swim recreationally, but not as a sport. Anything with impact, contact, or jarring is not ok so flip turns and diving are not ok. Will is ecstatic. Time to go buy the boy a swimsuit!
Will has been "medical hold" for Make-A-Wish Foundation for the last nine months. Since the brace is off, we can remove that hold and move forward on his wish. I told Katie, our case manager, that I would call her Monday morning and let her know how the appointment went. She is supposed to be restarting the paperwork...
Saturday morning I ran with some friends here who run way faster than I do. It was just a really good run with a good friend as long as I didn't try to talk. Afterward, we went to the church workday. It was rainy and cold and there were 12 cubic yards of mulch to move. We were still in our running clothes, which means I was also wearing a baseball cap since it was raining and praying no one would recognize me. One of the women asked me if I was new or just visiting. I laughed and said, "Both." After talking for a few minutes, she realized who I was...and stated that I look so different. I laughed. You would too if you ran almost five miles, got rained on, and then moved a bunch of mulch. I was very happy to grab a shower and put on warm, dry clothes.
Becky R and I ran a few errands, baked banana bread, and made cookie dough while Will had yet another IV. It was such a great day. I was thoroughly exhausted by the time it was over, but it was a good exhausted. I had spend time with good friends, accomplished something, and even got a great run in.
Today, we went to church, then Will and I headed to the Reds' game. Thursday after Will's CT scan, we dropped into Guest Services at the hospital to see Kim. She saw us, threw her arms up and said, "Unbelievable! We just got Reds tickets for Sunday and I can't imagine anyone whom I would like to give them to more than you!" Will was thrilled, I was thrilled, and so today we got to go. In the sun, it was cool but where we were sitting there was total shade and a steady breeze. It was so cold. The end of the game was a nail biter, and we ended up losing, but it was a great afternoon.
We got back to the Riggs's house just in time for covenant group. Will really needed fluids, so we started yet another IV and then I joined the adults while Will bonded with his computer.
It has been a total whirlwind of a few days, but it has been so good. Will got to hang out with a friend from church with whom he chats online, and he attended a baseball game. He gets to do it all again tomorrow. I have not seen him smile this much in months. He has needed an insane amount of fluids, IV's almost every day, but it has been so encouraging to him. I am totally amazed at how well we are cared for here in Cinci. It is amazing to have a real home away from home...and friends who welcome you back as if you were never gone. How do people manage daily life, much less crisis, without the body of Christ?
Wednesday, April 13, 2011
Here we Go Round the Mulberry Bush...
Well, this mulberry bush is making me dizzy. Seriously.
We had great flights. The first set of pilots was lovely. They were great with my little guys (who went with us this morning to the airport) and gracious with Will. We met Charlie, the second pilot, at Beckley, enjoyed lunch with all of them, then headed to Cinci. Charlie is always fun; he has an amazing sense of humor and just doesn't take life too seriously. For that leg, I got to sit in the right seat and totally enjoyed the flying lesson. For the record...keeping a plane at a steady altitude is not as easy as it seems. We felt like we were on a roller coaster for a few minutes, then I got the hang of it and impressed him with my finesse. It really was amazing...except that my leg fell asleep 'cause I was sitting on it 'cause I am so short I couldn't see over the dash of the plane. Details...details...
When we landed in Beckley, Will complained of his ears hurting. When we landed in Cinci, he was miserable and beginning to fade on me. I love my phone...I opened an app that found an urgent care facility and headed there. They took one look at his med list and said, "He takes all of these???" Um, yeah. Why do you think I carry a book around with me? Then came the list of surgeries...at that point she just walked away from the computer and told me to tell the doctor about it because the computer couldn't handle the information. Lovely. Where am I???
We weren't necessarily in the best section of town, nor was this office creating a sense of well-being, so I was beginning to worry. Silly me. Not only did the doc use "mitochondrial disease" correctly in a sentence, but she willingly gave us pain medication. Mito patients can't take Tylenol and Advil isn't recommended, so he takes Ultram for pain. It is not a narcotic, but it is a prescription. With a double ear infection, I was thinking we might need something tonight.
We headed across the road to a Meijer, a local Walmart-like store for the prescriptions (pain meds and antibiotic) and some groceries. Will is fading fast, so I am getting worried. When he gets mean, the IV moves to the top of the "to-do" list...having him attempt to run me over with the grocery cart wasn't the nicest thing he has ever done...Needless to say, the IV was at the very top of the to-do list.
We made it safely to the Riggs's house. They were, of course, amazingly gracious and had already stocked the fridge and provided snacks for us. Being here is like the eye of the hurricane. Peaceful. Just when you wonder if you can really keep going, the Lord just blesses you with friends who inexplicably love you and want to care for you.
Will is currently on an IV, he is still looking really rough, though, so I definitely am watching him closely. I just hope that he can hold his own with the fluids and won't require further intervention...
I did manage to forget my computer cord, so if there is a lapse in updates, it is because the battery died and I couldn't find one here. Tomorrow, a quest for a charger begins..
We had great flights. The first set of pilots was lovely. They were great with my little guys (who went with us this morning to the airport) and gracious with Will. We met Charlie, the second pilot, at Beckley, enjoyed lunch with all of them, then headed to Cinci. Charlie is always fun; he has an amazing sense of humor and just doesn't take life too seriously. For that leg, I got to sit in the right seat and totally enjoyed the flying lesson. For the record...keeping a plane at a steady altitude is not as easy as it seems. We felt like we were on a roller coaster for a few minutes, then I got the hang of it and impressed him with my finesse. It really was amazing...except that my leg fell asleep 'cause I was sitting on it 'cause I am so short I couldn't see over the dash of the plane. Details...details...
When we landed in Beckley, Will complained of his ears hurting. When we landed in Cinci, he was miserable and beginning to fade on me. I love my phone...I opened an app that found an urgent care facility and headed there. They took one look at his med list and said, "He takes all of these???" Um, yeah. Why do you think I carry a book around with me? Then came the list of surgeries...at that point she just walked away from the computer and told me to tell the doctor about it because the computer couldn't handle the information. Lovely. Where am I???
We weren't necessarily in the best section of town, nor was this office creating a sense of well-being, so I was beginning to worry. Silly me. Not only did the doc use "mitochondrial disease" correctly in a sentence, but she willingly gave us pain medication. Mito patients can't take Tylenol and Advil isn't recommended, so he takes Ultram for pain. It is not a narcotic, but it is a prescription. With a double ear infection, I was thinking we might need something tonight.
We headed across the road to a Meijer, a local Walmart-like store for the prescriptions (pain meds and antibiotic) and some groceries. Will is fading fast, so I am getting worried. When he gets mean, the IV moves to the top of the "to-do" list...having him attempt to run me over with the grocery cart wasn't the nicest thing he has ever done...Needless to say, the IV was at the very top of the to-do list.
We made it safely to the Riggs's house. They were, of course, amazingly gracious and had already stocked the fridge and provided snacks for us. Being here is like the eye of the hurricane. Peaceful. Just when you wonder if you can really keep going, the Lord just blesses you with friends who inexplicably love you and want to care for you.
Will is currently on an IV, he is still looking really rough, though, so I definitely am watching him closely. I just hope that he can hold his own with the fluids and won't require further intervention...
I did manage to forget my computer cord, so if there is a lapse in updates, it is because the battery died and I couldn't find one here. Tomorrow, a quest for a charger begins..
Monday, April 11, 2011
Upcoming Travel Schedule
As I am trying to conquer laundry so I can ship our clothes and school books ahead to Ohio, trying to get meals prepared for my family here, and answering the emails coming in regarding the impending trip, I'm a bit swamped. So, here's the short version...
Will and I have an Angel Flight Wednesday morning we hope. The weather is beginning to look a little iffy, but for now, the first flight is scheduled for 9 am. We should arrive in Beckley, WVA, where Charlie will pick us up for the second leg. That puts us in Cincinnati around lunch time.
Thursday Will has a CT scan at 4. Friday afternoon we see Dr. Crawford, the orthopedic, who will hopefully remove the encumbrance around Will's neck (his soft collar). We have several days off, then Wednesday we see the plastic surgeon who will reevaluate whether any further reconstruction is required for Will's palate.
That has us flying home on Thursday, April 21st.
If Will is separated from his soft collar, then he will come off of medical hold for Make-A-Wish, and those plans will once again move forward.
If the flight either way is canceled, I'm guessing I'll be driving a rental car to Ohio or home. Unfortunately, it appears that one of our cars is struggling with its transmission, the Jeep is unreliable, the van would cost a fortune to drive, and Billy needs it here.
Once we get settled in Ohio, I'll provide better information. Last week's 500 medical miles and this week's need to prepare for the trip is taking a toll...
Will and I have an Angel Flight Wednesday morning we hope. The weather is beginning to look a little iffy, but for now, the first flight is scheduled for 9 am. We should arrive in Beckley, WVA, where Charlie will pick us up for the second leg. That puts us in Cincinnati around lunch time.
Thursday Will has a CT scan at 4. Friday afternoon we see Dr. Crawford, the orthopedic, who will hopefully remove the encumbrance around Will's neck (his soft collar). We have several days off, then Wednesday we see the plastic surgeon who will reevaluate whether any further reconstruction is required for Will's palate.
That has us flying home on Thursday, April 21st.
If Will is separated from his soft collar, then he will come off of medical hold for Make-A-Wish, and those plans will once again move forward.
If the flight either way is canceled, I'm guessing I'll be driving a rental car to Ohio or home. Unfortunately, it appears that one of our cars is struggling with its transmission, the Jeep is unreliable, the van would cost a fortune to drive, and Billy needs it here.
Once we get settled in Ohio, I'll provide better information. Last week's 500 medical miles and this week's need to prepare for the trip is taking a toll...
Tuesday, March 29, 2011
Not What I Expected
I am not my typical quippy self tonight. It has been a long day, but I know a few of you guys would like some real information so here goes...
Will and Caroline had appointments with Dr. T today.
Will's appointment was fairly routine. His reflexes have slowed, which is actually a good sign that the brain stem is no longer compressed. The bad news is that while the surgery was necessary, it really did not alleviate any of his daily symptoms. He is still fighting the infection in his toe, so tomorrow I get to make an appointment with a surgeon who will need to try something more aggressive, including the possibility of in office surgery and IV antibiotics.
Now for Caroline...The short answer is that yes, she likely has mito. Having seen her last set of labs and the similarities between hers and Will's, I basically knew that was going to be the case. However, the question that remains is do we have to go to Atlanta for testing or can we run some extensive labs that will be compared to Will's that will allow a clinical diagnosis. The insurance company may balk at paying for supplements or treatments if she doesn't have the muscle biopsy, but Dr. T is going to talk with Dr. S in Atlanta to see if he will provide insight.
Dr. T also highly recommended that we revisit Dr. Sharps for Caroline's shoulder that basically dislocates on command. She spent 9 months in physical therapy for the shoulder last year, so we may be facing surgery there.
The most difficult piece of news was that Caroline's lower extremity reflexes are lightning fast while her upper extremity reflexes are normal. While I expected the mito diagnosis, I was totally blindsided by the ordering of the MRI to diagnose a likely brain stem compression.
Regarding Caroline, I knew the Ehlers-Danlos existed, suspected the GI issues, and was certain of the mito. But I figured that we would wait and pray that there was no Chiari issue. No Chiari issue meant no brain stem issue and hopefully a much slower progression of the disease process. The news that Dr. T expects there to be a basilar invagination totally shocked me. If indeed this is true, then Caroline will be headed for the same surgeries as Will has had and may/may not have a similar progression.
Billy is quick to remind me that no one knows anything for certain, and that God is in control of all of this. I recognize that. But the thought that she may have to undergo the same surgeries and some of the same struggles as Will just crushed me this afternoon. To watch one child struggle is insanely difficult. But to be told that a second child will likely head down the same path was totally overwhelming to me. The emotional, physical, financial side of all of this is mind boggling to me. How do we survive a second?
Is this a certainty? No. The MRI is still being scheduled. But I have not known Dr. T to ever be wrong. And when she looked at me and said, "I know one has been incredibly hard. I have no clue how you will manage two." totally rocked my little world.
Will and Caroline had appointments with Dr. T today.
Will's appointment was fairly routine. His reflexes have slowed, which is actually a good sign that the brain stem is no longer compressed. The bad news is that while the surgery was necessary, it really did not alleviate any of his daily symptoms. He is still fighting the infection in his toe, so tomorrow I get to make an appointment with a surgeon who will need to try something more aggressive, including the possibility of in office surgery and IV antibiotics.
Now for Caroline...The short answer is that yes, she likely has mito. Having seen her last set of labs and the similarities between hers and Will's, I basically knew that was going to be the case. However, the question that remains is do we have to go to Atlanta for testing or can we run some extensive labs that will be compared to Will's that will allow a clinical diagnosis. The insurance company may balk at paying for supplements or treatments if she doesn't have the muscle biopsy, but Dr. T is going to talk with Dr. S in Atlanta to see if he will provide insight.
Dr. T also highly recommended that we revisit Dr. Sharps for Caroline's shoulder that basically dislocates on command. She spent 9 months in physical therapy for the shoulder last year, so we may be facing surgery there.
The most difficult piece of news was that Caroline's lower extremity reflexes are lightning fast while her upper extremity reflexes are normal. While I expected the mito diagnosis, I was totally blindsided by the ordering of the MRI to diagnose a likely brain stem compression.
Regarding Caroline, I knew the Ehlers-Danlos existed, suspected the GI issues, and was certain of the mito. But I figured that we would wait and pray that there was no Chiari issue. No Chiari issue meant no brain stem issue and hopefully a much slower progression of the disease process. The news that Dr. T expects there to be a basilar invagination totally shocked me. If indeed this is true, then Caroline will be headed for the same surgeries as Will has had and may/may not have a similar progression.
Billy is quick to remind me that no one knows anything for certain, and that God is in control of all of this. I recognize that. But the thought that she may have to undergo the same surgeries and some of the same struggles as Will just crushed me this afternoon. To watch one child struggle is insanely difficult. But to be told that a second child will likely head down the same path was totally overwhelming to me. The emotional, physical, financial side of all of this is mind boggling to me. How do we survive a second?
Is this a certainty? No. The MRI is still being scheduled. But I have not known Dr. T to ever be wrong. And when she looked at me and said, "I know one has been incredibly hard. I have no clue how you will manage two." totally rocked my little world.
Wednesday, March 23, 2011
An Accident on the Way to a Happening
I'm truly a klutz. I laugh that my parents named me Nancy because it means "full of grace." Really? Obviously they had a lapse in judgment or they actually named the baby in the OTHER bassinet. :) My mom actually used to tell me that I was an accident on the way to a happening...
On Wednesday nights, I run with a group in Fredericksburg training for the Marine Corps Historic Half Marathon. I'm painfully slow, but I love running and endorphines are worth the pain of climbing stairs the next day. :) So tonight, I showed up to run, and Greg asks me how I am. They kinda weren't expecting me since I was on crutches last week. I explain how the knee is better so I'm gonna try for a few slow miles tonight.
But when we start running, I end up explaining to my friend that I had a problem with my knee due to a cortisone shot that really is routine for me and that I had an MRI on Tuesday but the knee feels better. However, the swinging of my arm is painful, so I have to explain that I dislocated my shoulder when getting out of bed to go to the MRI for my knee, and the shoulder is really tender. And then I realize how utterly ridiculous I sound.
So we continue running, and just before crossing the I95 bridge, there's this huge bang...apparently a truck or its trailer ran into the bridge. From what we can tell, everyone seems fine, but it definitely added excitement to the run.
With weeks like this one, who needs reality tv????
On Wednesday nights, I run with a group in Fredericksburg training for the Marine Corps Historic Half Marathon. I'm painfully slow, but I love running and endorphines are worth the pain of climbing stairs the next day. :) So tonight, I showed up to run, and Greg asks me how I am. They kinda weren't expecting me since I was on crutches last week. I explain how the knee is better so I'm gonna try for a few slow miles tonight.
But when we start running, I end up explaining to my friend that I had a problem with my knee due to a cortisone shot that really is routine for me and that I had an MRI on Tuesday but the knee feels better. However, the swinging of my arm is painful, so I have to explain that I dislocated my shoulder when getting out of bed to go to the MRI for my knee, and the shoulder is really tender. And then I realize how utterly ridiculous I sound.
So we continue running, and just before crossing the I95 bridge, there's this huge bang...apparently a truck or its trailer ran into the bridge. From what we can tell, everyone seems fine, but it definitely added excitement to the run.
With weeks like this one, who needs reality tv????
Just Another Day in Paradise
I am breaking my own golden rule to not blog at midnight and not eat M&M's because, really, the sugar makes me cranky and then just adds layers to the already cushioned cushion upon which I sit. But...there are days when a few M&M's and a few minutes of writing are just needed. Tonight, I deem that as one of those times.
So to update...Will is still 14 and Caroline is now 9. Oh, not the update you wanted. Well...here goes...
Will is pretty much the same. He's still fighting this crazy infected toe, and it's the only thing I can find that is keeping him a little off kilter. He's getting fluids pretty much every other day. The L-carnitine is making a huge difference, but he's just not holding more than a couple of days between infusions. Is this progression? I don't know. The stress on his body could be growth, infection, allergic reaction to the pollen, or just overall fatigue.
Caroline is currently a mystery. She no longer writhes on the floor complaining of abdominal pain. However, her hair is...odd. I know it sounds weird, but her hair has become very thin and frail. When I put her hair into a ponytail, you can actually see scalp in the back. And there's little volume. Her hair has always been wispy, but it's just...thin. She's also needing to be awakened out of a deep sleep for school, so there are concerns. I called her GI doc and we will see him on Thursday morning. It could be an absorption issue or an endocrine issue or I could just be crazy. If crazy wins, does this mean I get a vacation at the beach with which to recover my sanity? :)
I went to the pharmacy to pick up medications this evening and received the, "Oh, you don't owe anything" comment. Ha! Oh, but I do. We officially have met the $10,000 out of pocket in medical bills jackpot. I knew that the admission last month at MCV would put us at that magical number, but apparently the claim has been fully processed.
Some days this can be so daunting. But then there are days when you realize that your perspective is forever altered and, to be honest, altered for the better. When faced with the challenges of a chronically ill child, you realize that some things are just so not important. We may not be able to order pizza very often or even go to Carl's, but I can make pizza and spend the evening playing buttons with my family. At the end of the day, when sleep the night before was an enigma and all you want is to get them to bed so you can crawl into your own but you are instead sitting at a computer eating M&M's and trying to help people know how to pray, well, that is when you are grateful for M&M's and for the fact that your family is still intact and you are indeed blessed...The laundry and the cleaning and the schoolwork will wait for tomorrow. Today is indeed a gift.
So to update...Will is still 14 and Caroline is now 9. Oh, not the update you wanted. Well...here goes...
Will is pretty much the same. He's still fighting this crazy infected toe, and it's the only thing I can find that is keeping him a little off kilter. He's getting fluids pretty much every other day. The L-carnitine is making a huge difference, but he's just not holding more than a couple of days between infusions. Is this progression? I don't know. The stress on his body could be growth, infection, allergic reaction to the pollen, or just overall fatigue.
Caroline is currently a mystery. She no longer writhes on the floor complaining of abdominal pain. However, her hair is...odd. I know it sounds weird, but her hair has become very thin and frail. When I put her hair into a ponytail, you can actually see scalp in the back. And there's little volume. Her hair has always been wispy, but it's just...thin. She's also needing to be awakened out of a deep sleep for school, so there are concerns. I called her GI doc and we will see him on Thursday morning. It could be an absorption issue or an endocrine issue or I could just be crazy. If crazy wins, does this mean I get a vacation at the beach with which to recover my sanity? :)
I went to the pharmacy to pick up medications this evening and received the, "Oh, you don't owe anything" comment. Ha! Oh, but I do. We officially have met the $10,000 out of pocket in medical bills jackpot. I knew that the admission last month at MCV would put us at that magical number, but apparently the claim has been fully processed.
Some days this can be so daunting. But then there are days when you realize that your perspective is forever altered and, to be honest, altered for the better. When faced with the challenges of a chronically ill child, you realize that some things are just so not important. We may not be able to order pizza very often or even go to Carl's, but I can make pizza and spend the evening playing buttons with my family. At the end of the day, when sleep the night before was an enigma and all you want is to get them to bed so you can crawl into your own but you are instead sitting at a computer eating M&M's and trying to help people know how to pray, well, that is when you are grateful for M&M's and for the fact that your family is still intact and you are indeed blessed...The laundry and the cleaning and the schoolwork will wait for tomorrow. Today is indeed a gift.
Monday, February 21, 2011
Home..My Favorite 4 Letter Word!
We were discharged today and arrived home just in time to get out of the Buick and into the van to take Cam to basketball practice. I could definitely sleep for about two straight days, but it is now 10:00, the laundry is in process, and I have to be up by 6 to get Cam to a dentist appointment. Nope. Nothing here has changed. But familiar is kinda pleasant...even if it is a bit crazy.
As we were preparing to leave the hospital, it was truly an odd feeling. These people have become our friends, but we only see them under less-than-pleasant circumstances. There is a mom in particular who walks the hallways constantly with her little guy. Last month, we chatted briefly about the challenge of locating food in the hospital, especially on a Sunday evening. Everything but Subway closes at 2, so it is either a vending machine, Subway with an hour long line, order something to be delivered, or fast until Monday morning.
Today, as I was packing our stuff, I was in the family room. My sister, a personal chef, had created individual meals...amazingly yummy individual meals, for me. They were a huge blessing. I didn't have to leave the floor, they were healthy, and they were tasty. All I had to do was choose one and warm it in the microwave. Stouffers could learn a few things from Beth. Anyway, I had one breakfast and one entree remaining.
As Tabitha, who was there again with her little guy, and I were chatting, I realized that she was going to remain there for quite a while this time. I offered her the two remaining meals, and she was thrilled. What was the best part of all, was being able to share how the body of Christ has supported us and loved us and cried with us.
As we left the hospital, everyone said, "See you later!" We all know there will be a next time. But for now, we are home and safely tucked in our beds and ready for a much needed sleep.
As we were preparing to leave the hospital, it was truly an odd feeling. These people have become our friends, but we only see them under less-than-pleasant circumstances. There is a mom in particular who walks the hallways constantly with her little guy. Last month, we chatted briefly about the challenge of locating food in the hospital, especially on a Sunday evening. Everything but Subway closes at 2, so it is either a vending machine, Subway with an hour long line, order something to be delivered, or fast until Monday morning.
Today, as I was packing our stuff, I was in the family room. My sister, a personal chef, had created individual meals...amazingly yummy individual meals, for me. They were a huge blessing. I didn't have to leave the floor, they were healthy, and they were tasty. All I had to do was choose one and warm it in the microwave. Stouffers could learn a few things from Beth. Anyway, I had one breakfast and one entree remaining.
As Tabitha, who was there again with her little guy, and I were chatting, I realized that she was going to remain there for quite a while this time. I offered her the two remaining meals, and she was thrilled. What was the best part of all, was being able to share how the body of Christ has supported us and loved us and cried with us.
As we left the hospital, everyone said, "See you later!" We all know there will be a next time. But for now, we are home and safely tucked in our beds and ready for a much needed sleep.
Sunday, February 20, 2011
Thank You
This blog is truly a meandering of my thought processes. Will occupies 99% of those musings, but it really is me sitting at my computer, planning to write about something, and something else actually comes out of my fingertips. :)
My daily life is insanely busy. I feel like the only time I sit down when at home is to pay bills or quickly do something on the computer. In the hospital, though, that comes to a screeching halt, and I spend lots of time just sitting. (Which is why I blog more when I'm in the hospital...I am actually sitting!) But it also means I have time to think. And when Will is involved, thinking about his medical issues generally means that a fair amount of grief bubbles to the surface. When you are busy, you don't think. You just do. When you are sitting still, you have the chance to feel.
So, yesterday's blog about games and Will and loneliness was truly just an outpouring of grief. I didn't expect solutions. But, what I received in response was an outpouring of love for my son, which means yet another bout with tears. Not so sure I wanna thank you for the tears, but I definitely want to thank you for what you all have done.
William was inundated with visitors today and my inbox filled with links to card games and rules, game suggestions, and the gift of games. Someone actually brought cribbage and played with William. Robin, the world's best child life specialist, contributed by not only playing with Will, but sending in a volunteer with whom he played last time, to play with him again. From 2:00 this afternoon til ten tonight, there was literally zero down time in his day. Friends and family ensured that he was not only not lonely, but not bored either.
And the icing on the cake? Erlene baked chocolate chip cookies and brought them to us. But she brought a second plateful of cookies for the nurses because she knew that I would want to thank them for all they have done.
So when people look at me and ask me how I do all that I do, I can point to days like today when friends and family totally rally around us and show us that we are not alone. It is days like today that enable me to see just how much we are loved. This is all so incredibly hard, but we are indeed blessed.
So, thank you...for the kind, gentle reminder that even when we are sitting alone in a hospital room, we have friends and family who love us and are praying for us. There really aren't words to sufficiently convey my gratefulness.
My daily life is insanely busy. I feel like the only time I sit down when at home is to pay bills or quickly do something on the computer. In the hospital, though, that comes to a screeching halt, and I spend lots of time just sitting. (Which is why I blog more when I'm in the hospital...I am actually sitting!) But it also means I have time to think. And when Will is involved, thinking about his medical issues generally means that a fair amount of grief bubbles to the surface. When you are busy, you don't think. You just do. When you are sitting still, you have the chance to feel.
So, yesterday's blog about games and Will and loneliness was truly just an outpouring of grief. I didn't expect solutions. But, what I received in response was an outpouring of love for my son, which means yet another bout with tears. Not so sure I wanna thank you for the tears, but I definitely want to thank you for what you all have done.
William was inundated with visitors today and my inbox filled with links to card games and rules, game suggestions, and the gift of games. Someone actually brought cribbage and played with William. Robin, the world's best child life specialist, contributed by not only playing with Will, but sending in a volunteer with whom he played last time, to play with him again. From 2:00 this afternoon til ten tonight, there was literally zero down time in his day. Friends and family ensured that he was not only not lonely, but not bored either.
And the icing on the cake? Erlene baked chocolate chip cookies and brought them to us. But she brought a second plateful of cookies for the nurses because she knew that I would want to thank them for all they have done.
So when people look at me and ask me how I do all that I do, I can point to days like today when friends and family totally rally around us and show us that we are not alone. It is days like today that enable me to see just how much we are loved. This is all so incredibly hard, but we are indeed blessed.
So, thank you...for the kind, gentle reminder that even when we are sitting alone in a hospital room, we have friends and family who love us and are praying for us. There really aren't words to sufficiently convey my gratefulness.
Saturday, February 19, 2011
Can Will Come Out and Play?
We are hanging out in the Progressive Care Unit, awaiting Will's ability to tolerate his bp meds and food and maintain his stability without the lifeline being attached. It's a slow process.
Last time we were here (last month), Robin, a child life specialist, came in and played with Will for an hour. Then she sent a volunteer to play Mancala. Watching them play, it hit me that Will doesn't often have the opportunity to play with someone other than me, and what really struck me was that he is really isolated. While he is a typical 14 year old in many ways, he is anything but normal in that he can't play sports, and if we plan to do something fun, it frequently gets canceled or postponed because he doesn't feel well. He has been in the hospital at least five days every month but one since October.
I really don't know how to fix this isolation or know how to try to plug him into something that gives him friendship/contact with his friends, but he needs that as much as I do. He's a social kid. He is also burned out on cards, is tired of losing at bananagrams, and is getting weary of mancala. So now what cool game do I find that will get him thinking in a fun way but is smaller than a bread box and will fit in his backpack with everything else?
So, Robin, our favorite child life specialist, is gonna be back to play with Will in a little while. And I am so grateful that she is here. They have a mutual admiration club and she comes up with cool, creative games to play. More importantly, she gets him out of his little, "I am really tired of being here and wanna go home" funk. That is currently the best part of all.
Last time we were here (last month), Robin, a child life specialist, came in and played with Will for an hour. Then she sent a volunteer to play Mancala. Watching them play, it hit me that Will doesn't often have the opportunity to play with someone other than me, and what really struck me was that he is really isolated. While he is a typical 14 year old in many ways, he is anything but normal in that he can't play sports, and if we plan to do something fun, it frequently gets canceled or postponed because he doesn't feel well. He has been in the hospital at least five days every month but one since October.
I really don't know how to fix this isolation or know how to try to plug him into something that gives him friendship/contact with his friends, but he needs that as much as I do. He's a social kid. He is also burned out on cards, is tired of losing at bananagrams, and is getting weary of mancala. So now what cool game do I find that will get him thinking in a fun way but is smaller than a bread box and will fit in his backpack with everything else?
So, Robin, our favorite child life specialist, is gonna be back to play with Will in a little while. And I am so grateful that she is here. They have a mutual admiration club and she comes up with cool, creative games to play. More importantly, she gets him out of his little, "I am really tired of being here and wanna go home" funk. That is currently the best part of all.
Friday, February 18, 2011
Again???
I feel like we have been here before ...probably because we have been here before.
This evening I arrived home to Will totally crashed on the sofa with....another stomach virus. So once again he and I are hanging out in MCV's new pediatric ER awaiting the news of where they will put us 'cause you know we are going to be admitted.
Andrew started this with a fairly mild version, but Will doesn't catch the mild version of anything. His blood pressure has already dropped once, so we have a bolus running. The neurologist on call is a bit clueless regarding Mito, but the ER attending has a boatload of clues so he is totally bridging the gap. I am so grateful for him, esp since Dr. T is out of town.
We will once again be admitted to the Progressive Care Unit where they can monitor him more closely. We will once again have to suspend one of his Bp meds til his belly can tolerate it so we may be here a while...
This evening I arrived home to Will totally crashed on the sofa with....another stomach virus. So once again he and I are hanging out in MCV's new pediatric ER awaiting the news of where they will put us 'cause you know we are going to be admitted.
Andrew started this with a fairly mild version, but Will doesn't catch the mild version of anything. His blood pressure has already dropped once, so we have a bolus running. The neurologist on call is a bit clueless regarding Mito, but the ER attending has a boatload of clues so he is totally bridging the gap. I am so grateful for him, esp since Dr. T is out of town.
We will once again be admitted to the Progressive Care Unit where they can monitor him more closely. We will once again have to suspend one of his Bp meds til his belly can tolerate it so we may be here a while...
Sunday, February 13, 2011
A Good Doctor is Worth Her Weight in Gold
I know I sing Dr. T's praises regularly, but really? What doctor calls you on a Saturday night at 8:00 to discuss your son with you before she leaves on vacation? And mentions that she is contacting a doctor in Seattle regarding William because she hopes he has some insight. This woman lives her job, which actually makes me worry about her, but at the same time, I'm so incredibly grateful for her. She is constantly advocating on Will's behalf and looking for solutions to make his life more...manageable and enjoyable. And the phone call? It isn't a 20 second information dump, it's a fifteen minute discussion about how he is, where his baseline currently is, and then discusses what we can change to make things better. I really do not know what we would have done these last three years without her.
On the trip home, Thursday night, we were driving in the dark in the mountains, and I asked William how he was doing emotionally with all of the "stuff" he's had to contend with. Interestingly, he said, "Fine." Um, really? He had just gotten the big ol' brace off and was a bit giddy over the smaller one, so I kinda understood his reaction, but when a doctor walks in and tells you bluntly that you are the second sickest kid in her practice, then that has to have an impact on you. The fact that he is unfazed by it has me a bit...concerned. Is he really ok with it or is he just internalizing it all and ignoring it? You don't get approved for a Make-A-Wish Foundation trip unless you have a life-threatening illness. But Will seriously seems to be coping incredibly well.
So, do I worry that Dr. T has no life outside of her patients (ok. She is spending the week roaming the Keys this coming week, so she has some kind of relief!) and Will is unfazed by the fact that he is kinda sick? I think, at the moment, I'm gonna stick my head in the sand, pray for both of them, and run...a lot. :)
On the trip home, Thursday night, we were driving in the dark in the mountains, and I asked William how he was doing emotionally with all of the "stuff" he's had to contend with. Interestingly, he said, "Fine." Um, really? He had just gotten the big ol' brace off and was a bit giddy over the smaller one, so I kinda understood his reaction, but when a doctor walks in and tells you bluntly that you are the second sickest kid in her practice, then that has to have an impact on you. The fact that he is unfazed by it has me a bit...concerned. Is he really ok with it or is he just internalizing it all and ignoring it? You don't get approved for a Make-A-Wish Foundation trip unless you have a life-threatening illness. But Will seriously seems to be coping incredibly well.
So, do I worry that Dr. T has no life outside of her patients (ok. She is spending the week roaming the Keys this coming week, so she has some kind of relief!) and Will is unfazed by the fact that he is kinda sick? I think, at the moment, I'm gonna stick my head in the sand, pray for both of them, and run...a lot. :)
Thursday, February 10, 2011
Where Everyone Knows Your Name
This afternoon I had the choice...do I take the turnpike, which adds an hour to the trip but avoids the mountains and back roads, or do I take the same route I took on the way up which of course is mountains and back roads in the dark. At the last minute, I opted for the faster route. My mistake. It was getting later into the evening, I was tired, and that is not a great combination for curvy secondary roads that I have only driven twice. So we stopped in Cumberland.
We stayed at this Fairfield Inn in May on our return trip from Will's surgery. When I walked in tonight, it was the same desk clerk and she totally remembered me. I was so surprised. She helped me locate food for a late dinner (in a town that closes its doors at 9 pm) and was just...welcoming. Being recognized for some reason makes you feel...at home...not as much of an interloper. Being where everyone knows your name is comforting. Surprising, but comforting.
As for Will...he has traveled on an IV and seems to be tolerating the trip. What he isn't tolerating is the little brace. He never complained about the big one, wore it all the time, and really was amazingly compliant with it. But now that he has the little one??? Man. I keep finding it off of him. It is like he has senioritis. The end is in sight so he's not interested in doing what he still has to do. The next two months may get interesting with him.
Time to crash so I can finish the drive tomorrow, find food to take for Ben's parent night, and actually attend parent night.
We stayed at this Fairfield Inn in May on our return trip from Will's surgery. When I walked in tonight, it was the same desk clerk and she totally remembered me. I was so surprised. She helped me locate food for a late dinner (in a town that closes its doors at 9 pm) and was just...welcoming. Being recognized for some reason makes you feel...at home...not as much of an interloper. Being where everyone knows your name is comforting. Surprising, but comforting.
As for Will...he has traveled on an IV and seems to be tolerating the trip. What he isn't tolerating is the little brace. He never complained about the big one, wore it all the time, and really was amazingly compliant with it. But now that he has the little one??? Man. I keep finding it off of him. It is like he has senioritis. The end is in sight so he's not interested in doing what he still has to do. The next two months may get interesting with him.
Time to crash so I can finish the drive tomorrow, find food to take for Ben's parent night, and actually attend parent night.
Wednesday, February 9, 2011
Yesterday morning, we left Zanesville, Ohio and drove just under three hours to Cincinnati...in yet more snow. The roads were totally clear, but the visibility was a bit of an issue, especially when the windshield wiper that made this constant squeaky noise decided to no longer clean the windshield...and then I ran out of windshield washer fluid. Let's see. Driving 75 mph down the interestate with lots of trucks and other cars and not being able to see out of the windshield doesn't strike me as the wisest of choices. So, we gave great thanks for a gps that could locate an Advance Auto Parts just three miles off the interestate who actually had the windshield wipers in stock and whose employee very graciously put them on the Buick for me. A clean winshield with no squeak...it's the little things in life that we should appreciate!
We arrived at the hospital a few minutes early. Not that it mattered. After we checked in, they kinda misplaced his chart. An hour and a half later, I asked how much longer. Tanya, the receptionist, profusely apologized and went to locate his chart. Voile'. Moments later, he was called to radiology for his umpteenth cervical xray. We were told we would be put in the next available room, but someone did not get that memo. Finally, 2 1/2 hours after our appointment time, we actually laid eyes on Dr. Crawford.
Dr. Crawford is a tall, well-spoken, clarinet-playing older gentleman. He always smiles and yesterday, profusely apologized for our getting lost in the system. We could have gotten totally bent out of shape over it, but really, what is the point. It was an honest mistake. We were here for the sole purpose of seeing Dr. Crawford, which we did.
Yesterday at breakfast I had asked Will how he was feeling about this appointment. He basically stated he wanted out of the brace but didn't expect for that to happen. After the last MRI and xray, we were led to believe that the fusion between the base of the skull and C1 were not happening. Two months later, Dr. Crawford is totally pleased with the progress and tells Will he can have a smaller brace. At first it didn't register, but then reality dawned. Yep. He now has a small squishy little brace that basically is there to remind him that his neck muscles are way too weak and he needs to strengthen them with certain exercises. We return in April for a CT scan and hopefully, maybe, he will be able to come out of the brace altogether. But there are no promises on that. Needless to say, Will came out with a huge grin and asked if he could burn the big brace. :)
We are staying with Becky and Keith in their amazing basement apartment. Even as I type this, I am sitting in front of a fireplace and contemplating how amazingly the Lord has cared for us over the last year. When we were in Cleveland in December 2009 and received the news of what was ahead for us, our world was totally rocked. Even then, we had no idea how incredibly difficult all of this was going to be. But what is even more incredible is how the body of Christ has supported us in every way.
So today, we are quite happily hanging out with an IV and getting ready for the return drive. I will let Will sleep tomorrow as long as possible, and we will likely start driving somewhere around noon. We'll stop somewhere tomorrow night if we get too tired, and that puts us home sometime Friday afternoon.
We arrived at the hospital a few minutes early. Not that it mattered. After we checked in, they kinda misplaced his chart. An hour and a half later, I asked how much longer. Tanya, the receptionist, profusely apologized and went to locate his chart. Voile'. Moments later, he was called to radiology for his umpteenth cervical xray. We were told we would be put in the next available room, but someone did not get that memo. Finally, 2 1/2 hours after our appointment time, we actually laid eyes on Dr. Crawford.
Dr. Crawford is a tall, well-spoken, clarinet-playing older gentleman. He always smiles and yesterday, profusely apologized for our getting lost in the system. We could have gotten totally bent out of shape over it, but really, what is the point. It was an honest mistake. We were here for the sole purpose of seeing Dr. Crawford, which we did.
Yesterday at breakfast I had asked Will how he was feeling about this appointment. He basically stated he wanted out of the brace but didn't expect for that to happen. After the last MRI and xray, we were led to believe that the fusion between the base of the skull and C1 were not happening. Two months later, Dr. Crawford is totally pleased with the progress and tells Will he can have a smaller brace. At first it didn't register, but then reality dawned. Yep. He now has a small squishy little brace that basically is there to remind him that his neck muscles are way too weak and he needs to strengthen them with certain exercises. We return in April for a CT scan and hopefully, maybe, he will be able to come out of the brace altogether. But there are no promises on that. Needless to say, Will came out with a huge grin and asked if he could burn the big brace. :)
We are staying with Becky and Keith in their amazing basement apartment. Even as I type this, I am sitting in front of a fireplace and contemplating how amazingly the Lord has cared for us over the last year. When we were in Cleveland in December 2009 and received the news of what was ahead for us, our world was totally rocked. Even then, we had no idea how incredibly difficult all of this was going to be. But what is even more incredible is how the body of Christ has supported us in every way.
So today, we are quite happily hanging out with an IV and getting ready for the return drive. I will let Will sleep tomorrow as long as possible, and we will likely start driving somewhere around noon. We'll stop somewhere tomorrow night if we get too tired, and that puts us home sometime Friday afternoon.
Monday, February 7, 2011
The Scoop on Miss Molly
We are safely ensconced in a hotel in Ohio about 2.5 hours from Cincinnati. It is dark, snowing heavily, and I am tired. So it was in our best interest to stop tonight and continue driving tomorrow late morning. Our appointment is scheduled for 245, so we have plenty of time.
As for Caroline...we saw Dr. Graham last week to discuss the results of her tests. Basically, her abdominal pain and other symptoms are from the same issue as William's. The food sits in her stomach rather than going into the intestines, so her stomach churns out acid the whole time. The intestines don't move things along, so that creates more pain and increases the risk of an obstruction. She is now on three different meds to manage the pain and lesson the symptoms. They won't cure or solve the problem, but the medications will alleviate her discomfort and hopefully help the GI tract to function more normally which in turn will help her to grow and develop.
So the burning question is, "What does this mean?" and the answer is, "I don't know." Is this the same diagnosis/issue that Will has? Yes. Does that mean she has mito? This is where the water gets murky. William's Chiari three years ago and the resulting brain stem compression have contributed to his physical issues. Which came first, the chicken or the egg? The fact that her joints are so unstable means she has the same Ehlers-Danlos as Will. The likelihood that she has mito is very strong. But until Dr. T sees her and makes a decision, we are still in a holding pattern...If she does, then starting her on the cocktail would be important. But it takes time to get through all of the little checkboxes that we have to conquer. So while the waiting time is challenging, we have at least one more piece to the puzzle.
Back to William...We are scheduled to see the orthopedic tomorrow. William still has his impressive neck brace on because the fusion was still incomplete. We have not had an xray on the cervical spine for two months, so anything could have happened. Best case scenario is that the fusion is complete and the brace can be removed. The worst care scenario is that the fusion is not happening and we are having to physically do something to make it fuse which translates to yet another surgery and the possibility of a halo.
So, tomorrow morning, we will head toward Cincinnati and will revisit the esteemed Dr. Crawford.
As for Caroline...we saw Dr. Graham last week to discuss the results of her tests. Basically, her abdominal pain and other symptoms are from the same issue as William's. The food sits in her stomach rather than going into the intestines, so her stomach churns out acid the whole time. The intestines don't move things along, so that creates more pain and increases the risk of an obstruction. She is now on three different meds to manage the pain and lesson the symptoms. They won't cure or solve the problem, but the medications will alleviate her discomfort and hopefully help the GI tract to function more normally which in turn will help her to grow and develop.
So the burning question is, "What does this mean?" and the answer is, "I don't know." Is this the same diagnosis/issue that Will has? Yes. Does that mean she has mito? This is where the water gets murky. William's Chiari three years ago and the resulting brain stem compression have contributed to his physical issues. Which came first, the chicken or the egg? The fact that her joints are so unstable means she has the same Ehlers-Danlos as Will. The likelihood that she has mito is very strong. But until Dr. T sees her and makes a decision, we are still in a holding pattern...If she does, then starting her on the cocktail would be important. But it takes time to get through all of the little checkboxes that we have to conquer. So while the waiting time is challenging, we have at least one more piece to the puzzle.
Back to William...We are scheduled to see the orthopedic tomorrow. William still has his impressive neck brace on because the fusion was still incomplete. We have not had an xray on the cervical spine for two months, so anything could have happened. Best case scenario is that the fusion is complete and the brace can be removed. The worst care scenario is that the fusion is not happening and we are having to physically do something to make it fuse which translates to yet another surgery and the possibility of a halo.
So, tomorrow morning, we will head toward Cincinnati and will revisit the esteemed Dr. Crawford.
Sunday, February 6, 2011
Detour Ahead
When Will was in the hospital a couple of weeks ago, we had to reschedule lots of appointments, including a Cincinnati appointment. That appointment is now scheduled for Tuesday. We did have an Angel Flight scheduled for Monday, but Cincinnati is anticipating snow throughout the day, so that was canceled this afternoon. So, we have yet another change, and now I'm driving.
I made so few plans for this trip. Last time I drove, it became this insanely long trip...on the drive up, there were two different car fires, a total interstate closure, and miles of road work. I actually cried the last half hour of the drive 'cause I was so tired. Well...the return trip was the "how many hospitals are there between Cincinnati and home." Not the fondest memories, so there is a boatload of apprehension associated with this trip.
Will has had an IV today which brings him to a total of 5.5 liters this week. Not a horrid week, but not great either. He will travel on an IV tomorrow, which makes me akin to the wicked witch of the west. He hates going out in public with his IV, but to not do so would invite disaster. So, he can just deal with it. :)
While I am very much not looking forward to this drive, I am looking forward to seeing friends I have not seen for two months. Talking to Becky tonight, she laughed and said that to her, I was away from home for the last two months. I do feel like I bounce between two homes/worlds. I miss my family when in Cincinnati, but how blessed I am to have that second home and the family to go with it. So many people in my position don't have that blessing. I can't imagine this last year without it.
So, tomorrow we drive and pray that we don't encounter any car-b-ques or road closures or detours. But if we do, we'll relax, enjoy some tunes, and patiently cope with whatever God has planned for us. It would just be nice not to have one of those big blue H signs in that plan.
When we finally arrive in Cincinnati, I'll fill you in on the current news of Caroline...Until then, I'm gonna crash so I can actually safely drive tomorrow...which is actually just later today since it's already after midnight. :)
I made so few plans for this trip. Last time I drove, it became this insanely long trip...on the drive up, there were two different car fires, a total interstate closure, and miles of road work. I actually cried the last half hour of the drive 'cause I was so tired. Well...the return trip was the "how many hospitals are there between Cincinnati and home." Not the fondest memories, so there is a boatload of apprehension associated with this trip.
Will has had an IV today which brings him to a total of 5.5 liters this week. Not a horrid week, but not great either. He will travel on an IV tomorrow, which makes me akin to the wicked witch of the west. He hates going out in public with his IV, but to not do so would invite disaster. So, he can just deal with it. :)
While I am very much not looking forward to this drive, I am looking forward to seeing friends I have not seen for two months. Talking to Becky tonight, she laughed and said that to her, I was away from home for the last two months. I do feel like I bounce between two homes/worlds. I miss my family when in Cincinnati, but how blessed I am to have that second home and the family to go with it. So many people in my position don't have that blessing. I can't imagine this last year without it.
So, tomorrow we drive and pray that we don't encounter any car-b-ques or road closures or detours. But if we do, we'll relax, enjoy some tunes, and patiently cope with whatever God has planned for us. It would just be nice not to have one of those big blue H signs in that plan.
When we finally arrive in Cincinnati, I'll fill you in on the current news of Caroline...Until then, I'm gonna crash so I can actually safely drive tomorrow...which is actually just later today since it's already after midnight. :)
Saturday, January 22, 2011
Here We Go Round the Mulberry Bush
We were supposed to be discharged today. Then we weren't. Maybe tomorrow?
This afternoon, William just started slipping...he was tired, not cracking jokes or haranguing the nurses, and laying down. Not good signs for him in the early afternoon. So began this huge discussion with the nurses. What to do. We hooked him back up to the fluids, but that was not gonna be enough. Finally, it hit me. If he is in an energy crisis, then he needs dextrose. Increase the rate of his fluids.
So, we doubled the rate and we watched him return to life. It is amazing how it worked, but it is also points out how fragile he still is. Not the greatest news in the world.
So now we wait. Was the extra dextrose enough of a nudge for his system to actually start working properly again? Well, time will tell. He ate tonight, which is great news, he is sitting up and chatting, which is a good sign. Will it last? Tune in tomorrow for another episode of, "As Will's World Turns."
This afternoon, William just started slipping...he was tired, not cracking jokes or haranguing the nurses, and laying down. Not good signs for him in the early afternoon. So began this huge discussion with the nurses. What to do. We hooked him back up to the fluids, but that was not gonna be enough. Finally, it hit me. If he is in an energy crisis, then he needs dextrose. Increase the rate of his fluids.
So, we doubled the rate and we watched him return to life. It is amazing how it worked, but it is also points out how fragile he still is. Not the greatest news in the world.
So now we wait. Was the extra dextrose enough of a nudge for his system to actually start working properly again? Well, time will tell. He ate tonight, which is great news, he is sitting up and chatting, which is a good sign. Will it last? Tune in tomorrow for another episode of, "As Will's World Turns."
Friday, January 21, 2011
We've Been Here Before
I have contemplated many posts, but I have not actually sat down to type them out. Sitting at my desk at home to do more than pay bills and set up the next Cincinnati trip has just not been the priority. I miss the blog, but the kids really needed to see Mom. I am actually sitting here in the dark typing this post 'cause Will was admitted to MCV last night.
Will caught a cold about four days ago and required more than the typical number of infusions. Unfortunately, he contracted a stomach virus yesterday. He was mostly coping with the cold, but the stomach virus put him over the edge. By the time I got home, started an IV, packed a bag (cause there was little doubt he would be admitted), and got him to MCV, he basically was curled up in the fetal position. Dr. T had paved the way for us, so within minutes of arriving we were in a bed. It took a while to get the IV L-Carnitine started, but once it was on board, the improvement was astounding. While he is far from himself, he is vastly improved. We were admitted to the Progressive Care Unit (actually, the same room we were in two previous times!) which is a step down unit for the ICU.
It's an interesting emotion when you walk into a hospital and are greeted with, "Hey! We haven't seen you in a while!" and then your nurse walks in and says, "How are you? How was the surgery?" or another nurse from the adult side sees your name on the board and walks over to say hello. When they are getting ready to transfer you to the floor, the new nurse tells the ER nurse, "Let them know they are going to the same room as last time." Last time was two months ago, but she remembered. The Billy Joel song about wanting to be where everyone knows your name takes on a whole new perspective.
While being here is far from where I would like to be, it is comforting to know that I don't have to go through the whole teaching curve all over again. They know Will, they know what to look for, and they genuinely seem to care. It is tough to have a nurse say, "I went home to research what is wrong with your son so I could better care for him cause I knew he would be back," but the fact that they are willing to donate their personal time to better care for your child gives you a sense of comfort you don't otherwise have.
So here I sit, in the dark, watching Will finally sleep. They did not have his night meds, so he didn't fall asleep til after 4 am. How he is able to sleep at all in this place is always a mystery to me, because there are a lot of us in a big room with no walls and it is always noisy.
We are supposed to fly to Cincinnati on Sunday for an appointment, then trek to Toledo (about five hours from Cinci) for another doctor appointments. I have no idea if I should cancel that trip, so I am waiting for the doctors to make rounds. I have no idea how long we will be here...
Will caught a cold about four days ago and required more than the typical number of infusions. Unfortunately, he contracted a stomach virus yesterday. He was mostly coping with the cold, but the stomach virus put him over the edge. By the time I got home, started an IV, packed a bag (cause there was little doubt he would be admitted), and got him to MCV, he basically was curled up in the fetal position. Dr. T had paved the way for us, so within minutes of arriving we were in a bed. It took a while to get the IV L-Carnitine started, but once it was on board, the improvement was astounding. While he is far from himself, he is vastly improved. We were admitted to the Progressive Care Unit (actually, the same room we were in two previous times!) which is a step down unit for the ICU.
It's an interesting emotion when you walk into a hospital and are greeted with, "Hey! We haven't seen you in a while!" and then your nurse walks in and says, "How are you? How was the surgery?" or another nurse from the adult side sees your name on the board and walks over to say hello. When they are getting ready to transfer you to the floor, the new nurse tells the ER nurse, "Let them know they are going to the same room as last time." Last time was two months ago, but she remembered. The Billy Joel song about wanting to be where everyone knows your name takes on a whole new perspective.
While being here is far from where I would like to be, it is comforting to know that I don't have to go through the whole teaching curve all over again. They know Will, they know what to look for, and they genuinely seem to care. It is tough to have a nurse say, "I went home to research what is wrong with your son so I could better care for him cause I knew he would be back," but the fact that they are willing to donate their personal time to better care for your child gives you a sense of comfort you don't otherwise have.
So here I sit, in the dark, watching Will finally sleep. They did not have his night meds, so he didn't fall asleep til after 4 am. How he is able to sleep at all in this place is always a mystery to me, because there are a lot of us in a big room with no walls and it is always noisy.
We are supposed to fly to Cincinnati on Sunday for an appointment, then trek to Toledo (about five hours from Cinci) for another doctor appointments. I have no idea if I should cancel that trip, so I am waiting for the doctors to make rounds. I have no idea how long we will be here...
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