Monday, January 23, 2012

Middle of the Night Musings

It is 430 am.  I am sitting on my "bed" in the PCU  watching Will sleep while keeping an eye on his monitor.  I have had only 3 hours of sleep a night since our arrival here on Thursday, so why I cannot return to sleep is a bit of an enigma.

I sit here, watching his blood pressure and heart rate drop yet again and my heart is heavy.  While we are in the hospital, Will is fully loaded up on fluids and carnitine.  He basically is returned to his best possible physical condition.  Most people leave the hospital and need a period of recovery time.  But Will is at his best.  So, if at his very best, his vitals drop so significantly, then what are they doing at home while he sleeps when his vitals are typically lower?

We have had endocrinology and cardiology consults during this admission.  More testing will be completed today.  But I doubt they will find much of anything.  Between the mito and the brain stem issues, his autonomic nervous system is not going to function properly.  This is all likely just more of the same...a progressive disease complicated by a brain stem that is apparently not recovering from being compressed. 

The doctor is tossing around options, like sending Will home with continual IV's.  Lots of people live their lives always attached to their line. But Will has already stated that if living a more active life involved an IV every day, then he would sit on the sofa. As his mom, that was a difficult statement to hear.  I can only imagine what he will say if/when he is told that continual IV therapy is the next step for every day life...not just an active life. 

There are not words to express the emotions that flit through me during the middle of the night musings.  I listen to the beeps and alarms and realize that they are alarming for Will.  His bp is low.  His heart rate is low.  I fear what may happen if they drop too much lower.  I know that Will is in God's hands and that He has appointed a time for Will to be with us.  But I want to scream and cry and I want to pretend that he is just sick today and after this admission things will be better.  I want the doctors to find a reason for the precipitous drops in vital signs.  But I really do know that this is just more of the same.  I just pray that I have the strength to hear and Will has the strength to handle whatever news they give us...and that our family can somehow find the strength and desire to love and support one another in the midst of it all.

Friday, January 20, 2012

The Inevitable

Not sure why I delude myself into believing that I can postpone or avoid the inevitable, but as I sit in Will's room at MCV, I have lots of time to contemplate it.  Lots.  Of.  Time.

I have this incurable need to make everyone happy, and for me to say that Will needs to be admitted means that pretty much everyone in my household is less than thrilled.  Yes, they love Will and want what is best for him, but it makes life hard all the way around.  Billy is at work fielding issues from home.  Erlene has an extremely busy week yet is sacrificing her time to help with my littles who would like their mom home.  Will, of course, would like to be anywhere but the hospital, and the older boys get to fend for themselves or care for younger siblings which they have had to do way too often.  But, there are times when the inevitable has to happen and so here we are.

Dr. T is out of town, so we are pretty much being managed from a distance through a doctor that doesn't understand (and who apparently did not read his chart before entering the room) which makes life...challenging.  We were put in a real room (Dr. T is gone, so no one realizes that he is supposed to be in a monitored bed...but since we have walls, a door, and a window, we are not complaining...too much) but unfortunately, the nursing staff is not familiar with us, with Will's unique challenges, nor are they working very hard at understanding.  Combined with their inability to meet his dietary needs, this has become a really frustrating experience. 

It is so funny how we grow so displeased with what we have...and want something different.  We wanted a room, a real room.  Well, we got that, but it is at the sacrifice of better care for William.  So what we wanted wasn't necessarily what was best for us.  Hmmmm....

That being said...while it has been an experience fraught with frustration with residents (really?  We have previously had issues, but they have been resolveable.  Not this time!) and less than stellar monitoring of his condition, we are where we need to be.  He is on fluids around the clock, carnitine every 8 hours by IV, and he is back on his meds.    He was in really rough shape this morning when his bp, heart rate, and body temp all plummeted, but he is slowly coming back up to levels that aren't sending the nurses to the phone in a panic. 

How long will we be here?  No clue.  I wish we had better information, but we don't.  I miss Dr. T and her infintely vast knowledge of and care for Will.  :(  I am thankful for Abigail and Chris willingly staying with the kids and grandkids yesterday while Will and I headed to the hospital.  I am thankful for insurance that allows us to be here (despite now officially meeting that  insane deductible in one fell swoop!).  And I am thankful that Dr T is a phone call away.  I just wish all of this weren't necessary.

Wednesday, January 18, 2012

Remember Me?

Yes, it has been a while.  I like to think it's because I've been incredibly busy, which I have, but a good part of it is that I have to actually sit and contemplate what to say, and there are times where dwelling on the reality is just...too hard.  You can make it through the day by taking it minute by minute, but if you sit down and dwell on the full reality it's all just overwhelming.

Will attended a friend's birthday party in December.  It was cold, and the party centered around a full blown airsoft battle, and Will really wanted to go.  So, his brothers helped ensure he had sufficient gear, he spent the afternoon running through the woods shooting his buddies, and he had a blast.  One of the moms asked if Will was going to handle this ok, and I shrugged and said, "He'll be sick in two days, but this is the most fun he's had in ages."  It was also the most activity he had had in ages.  He has been in physical therapy for months, but Will was challenging his body in ways it hadn't been challenged since his Make-A-Wish trip.

Two days later...he was sick.  When he gets sick, he gets really sick.  And he crashes.  A lot. The next two weeks became a daily battle to keep him out of MCV while knowing it's really what he needed...but he kept looking at me and stating that he wants to be home for Christmas.  Can you blame him?  I just can't.  So we gave lots of IV fluids and prayed and gave even more IV fluids and prayed some more.

And he has been really difficult to stabilize since that time.  We keep infusing more fluids, and he just keeps crashing.  I talked with his physical therapist today and he recommended that I call Dr. T tomorrow.  The question is...do we put him in the hospital for a few days to give him a boost that will hopefully get him back to baseline, or do we just keep doing what we are doing?  What is the definition of stupidity?  To keep doing the same thing expecting a different result?  That's not working for me so well...When he gets 5 IV's a week, which we've been doing for a few weeks, then maybe we need an alternative solution?

So tomorrow I'll be calling the amazing Dr. T and seeing if she has any pearls of wisdom.

As for the lovely Miss Caroline...well, I'd like to give you answers.  But I don't have any to give.  She clinically looks like a candidate for surgery, but the neurosurgeon here states that her images don't support that conclusion.  We do have an appointment in Cinci in May with Will's neurosurgeon, so we'll see what he has to say.  She is currently at a sleep study to determine if sleep apnea is an issue.  It would provide another piece to the puzzle of how well her brain stem is working...Stay tuned for those results...I may actually blog them before June.  :)

If you have time and want to see what Chris is up to...check out http://candidcameraphotography.blogspot.com/2011/12/smoke-photography-next-up-how-to-take.html or http://www.wix.com/cmc451/candidcamera/main-page#!__main-page/about.  He's done some amazing things with his new camera...


Sunday, September 4, 2011

Summer Draws to a Close

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.

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.

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.