Tuesday, December 14, 2010

Our Arrival Home...and the ensuing insanity...

I was informed today that I don't blog when I am home. So true. I hardly sit at my computer when I am home 'cause I am so busy doing everything else! The demands and needs here far exceed my ability to meet them, so every day feels like a flat out sprint.

However, I do realize that there are a few of you out there who are concerned and wish for information so you can pray more effectively, and there are a few out there who just like a good laugh, so here goes the insanity of our last ten days.

It was snowing in Cinci the morning we left, but our flight was "on time." We managed to check our bags (TSA has a thing against needles in suitcases...), get through security (Will gets to know TSA agents really well...the neck brace sends off all the alarms.), grab a bottle of water, and board "on time." What no one realized is that the line of planes to be de-iced was extensive.

Two hours later, Will was not looking so great. The plane was over 80 degrees (even I was warm!), there had been no food or water (and we had boarded at 1100), and the end of the wait was not in sight. So I called the flight attendant, explained that Will had an extensive medical background, and was headed for trouble. She provided a Coke (sugar for the mito, caffeine for the blood pressure) and cookies which I then forced Will to eat. You try forcing a 14 yo who doesn't feel well to do something. I love my job. :) I called Billy, who was just getting ready to get on the interstate, and ask him to return home for a bag of IV fluids. Will is going to need them.

So, finally, three hours after boarding this plane, we finally take off. The captain of our flight kept repeating that he had never seen such an abysmal de-icing situation, and the flight attendant stated that she had never seen such an insanely long delay. Their frustration was understandable, but I am sitting here watching William not doing so well and wondering if I should have gotten him off the plane while we were sitting on the tarmac.

I finally asked the flight attendant if they could remove our medical bag from the rest of the baggage before sending it to baggage claim. I really need that medical bag, but do not want to drag Will through the whole terminal before starting an IV. She heads back to the pilot to see what she can do.

When she returns, she informs me that they will be able to separate it and hand it to me upon landing. What they did not tell me is that they also radioed for assistance. So when we finally landed, Will is really not feeling well which makes him insanely grouchy. I look at him and warn him that he is gonna do exactly what I tell him to do without arguing. I grab his backpack, realizing he should not spend the energy to carry it, when I look out the window. There are lots of flashing red lights and a posse of EMS personnel. And they are walking toward our plane. Ooooooh. They are for us. Oh, this is so gonna make Will so not happy.

I wait until just about everyone is off the plane, allowing the airport personnel time to grab my medical bag. As we step out onto the walkway, we are greeted by no less than six paramedics and a wheelchair. They look at me like I am the patient, and I let them know that it is Will. They ask how they can help, and I tell them I need to start an IV. There is a nice warm ambulance just steps away, so off we go.

They ask about Will's medical history, and they get that glassy-eyed look that says, "Um, wow. I have no idea what you are talking about but I am sure glad you do." They offer their assistance and are invaluable in finding a way to get dextrose into the IV solution and graciously all wear masks while I access the port. While I was really not expecting the attention-grabbing welcome in Richmond, the paramedics with both the Sanston squad and the airport fire department were more than professional and gracious. Within minutes of landing, we were able to get an IV started in a warm, safe, moderately germ-free location with more than competent assistance at our finger tips. It was certainly not the arrival we had anticipated, but it was incredibly helpful and helped prevent yet another dash to MCV.

Will has been stably unstable since. He has caught a cold going through the family, but he is home and not in MCV. He is receiving fluids almost every other day, but he is holding his own.

Benjamin is scheduled to have an umbilical hernia repaired Friday morning. This should be a simple, same day procedure, but after Will, I always worry about anesthesia issues. Will has had a procedure with complete awareness so I just dread the whole process.

Caroline did see Will's GI doctor this past week. She has fallen off her growth curve and is complaining of chronic abdominal pain. Will's managing physician, Dr. T, did call Dr Graham, and they are both aware that Will started this whole mito issue at the same age with the same complaints. Does this mean it is the same? No. But the strong possibility exists. Dr. Graham was fabulous with Caroline and is performing the tests that will confirm whether this is gastroparesis or not.

Erlene worked her magic today with our house and it is beginning to look like Christmas. My tree is beautiful, my home is decorated, and all that is left is for me to find some of that magical Christmas joy and actually go shopping...in between IV's, dr appts, school commitments, grocery shopping, and laundry. I have been accused of being Scrooge this year, which really isn't true. I am just really struggling to find joy or even the desire to add one more thing to a schedule that is already out of control. I am not paralyzed by fear of Ben's surgery or what could be beginning with Caroline, but I do appear to be paralyzed by grief...and that doesn't always seem so compatible with joy.

Friday, December 3, 2010

Oh What a Day!

Yesterday was like one of those perfect days. We had the day totally free (ok, there was the whole laundry thing, but other than that...there was nothing on the schedule. Do you know how often THAT happens???) so I let Will sleep til he awoke. He is 14. That does mean 130 in the afternoon. So I had the entire morning to myself...

So what did I do? I read a book. Really. Just for fun. You can do that. :) And when I was hungry, I remembered that there was this amazing German bakery just a couple of miles down the road.

When I was a kid, my mom used to buy Stollen (a German pastry/sweet bread with almonds and fruit) every Christmas season. I haven't seen it very often in Fredericksburg, but a few weeks ago, Becky G brought us one when she brought us lunch at the hospital. Talk about a flashback. That was one of my mom's favorite Christmas treats. So, I was so glad to bring home an amazing one for my kids to try.

So, I read a book and went to the bakery. But...this week, I have really fought what I thougth was carpal tunnel in my left hand. I just figured that the knitting was causing me issues. Well, Wednesday night, I tilted my head to the side and then my fingers felt like there were needles going into them. Okay. Well then. Guess it isn't really carpal tunnel. My neck has been really sore the last couple of weeks...guess the whole hand thing is related.

I had been given a gift card for a massage and there is this place just down the road like two miles, (Seriously...everything but the hospital is within two miles of this hotel!)so I called and they had an appointment available in two hours. Can the day get any sweeter?

So, back from the massage, and we head for dinner. I was so tired of places that sell burgers, so I dragged Will off to a Mexican place. We walk in, and this guy sitting at one of the tables looks really familiar and smiles. I obviously won't know anyone here, so I don't think anything else about it.

Will and I are almost finished when this guy gets up and walks over and says, "Do you remember me?" Before I can respond, Will says, "You were at the Ronald McDonald House one night with dinner." Sure enough, Scott is the youth pastor at a local Methodist church and his youth group had made Mexican food for dinner one night for the House. He and Will had chatted (ok. This guy is every bit as goofy/funny as Will so those two did a lot more than chat.) for quite a while.

Apparently, when we had left the room that night, Scott had told Will to behave or he was gonna smack him upside the head. Well, one of the girls in the group thought Scott had threatened Will and was really upset. Scott explained that he had chatted with Will for a long time, and Will knew he was playing. This girl then went home and told her mom who approached Scott and asked for clarification. So poor Scott could not escape the constant reminder of William and therefore recognized him immediately.

Scott had finished his meeting, and walked over to say hello. We invited him to join us for a few minutes, so he sat down and chatted/played with Will and related the story of how he remembered him. He asked why we were so far north of the city and we explained about the hotel and the amazing gift we had been given. It was a joy to explain how the body of Christ has supported us throughout this entire process. We chatted a few more minutes, then he headed home to spend time with his family.

We finished our meal, and the server walks over and says, "You do realize that he covered your bill." Um, no. Are you serious? With no fanfare or acknowledgement, he had quietly covered the entire check.

I guess the point I am trying to make here is that yesterday was all about rest. I rested in ways that I never do. I seldom sit down to just knit or read or even run. The list of things is never ending and the needs exceed my abilities. Yet, yesterday, I did rest, and the Lord just made all of these cool opportunities available to me and then blessed us with the reminder that He is there even when we least expect it. And rest...really, it is a good thing. :)

Wednesday, December 1, 2010

Mama Called the Doctor and the Doctor Said...

Will totally gives these poor doctors and nurses a run for their money. He is forever teasing them or pushing their buttons to get a reaction. Most handle it fine, but it is interesting the number of nurses who have no idea what to do. They are so accustomed to ensuring that patients don't fall, that when he pretends to trip, they totally whig. Or, if they want to take his temperature, he will either refuse to open his mouth or say, "If you take it I won't have one." And this week Will had ample opportunity to torture, tease, and in general aggravate plenty of medical professionals.

Yesterday, Will had an MRI of his head and an xray of his neck. We have no clue how the xray looks since Dr. Crawford is out of town. However, we saw Dr. Crone this morning and he is pleased with the appearance of fluid around the brain stem. In other words, there is sufficient room around the brain stem that it should start to fill out and hopefully recover from the compression. How long that takes is anyone's guess, but we should start to see improvement in another month or so...definitely by mid February. I have noticed that Will struggles more frequently with trying to find the "right word" when talking, so I did ask if that was caused by the surgery. Dr. C said it was possible, so we will just watch that and see how it goes.

The ENT was hilarious. He handled Will fabulously and had us all laughing. The stoma (the hole where the trach was.) is healing nicely. Dr. W did request an xray of the neck to check for scar tissue in the airway, but as long as that is clear we don't have to return to see him. He did request a hearing test which was within normal limits, so apparently Will is suffering from "male selective hearing loss" according to Dr. Willging. :)

The last doctor was Dr. B, the plastic surgeon. He walked in, took a look in Will's mouth at the incision site, and asked how speech sounded. He wants to recheck Will in April just to ensure that the tonal quality of Will's speech remains stable.

That pretty much concludes our appointment schedule here in Cinci. Will is exhausted and does not seem to be tolerating the trip all that well. He had fluids Sunday evening and again Tuesday evening. He has another IV on Friday. I am just hoping to avoid one tomorrow (Thursday). He actually fell asleep in the car (which never happens) this afternoon and was snoring (which regularly happens. This child can saw some serious logs!)

It snowed all day here but there was little to no accumulation. The snow was so much more beautiful than the inches rain of yesterday. They are calling for the first accumulation of snow over the weekend, so maybe it is a good thing that we fly out on Saturday? However, it is insanely cold here. The temps are in the 30's for highs and the brisk wind of today just made being outside (like pumping gas into my very fun Charger) insanely miserable. I do not like the cold, Sam-I-Am. I do not like it anywhere.

We are now safely ensconced in the hotel where we have heat and pillows and no intention of getting back in the car before noon tomorrow. We have experienced Cincinnati rush hour three times in the last two days which really is not all that bad, but the weather the last two days made rush hour more challenging than normal. Will is not the only one exhausted.

Monday, November 29, 2010

My How Time Flies

I do realize it has been more than a week since an update was written. That week was so crazy, though, that there was no time to even touch my computer beyond the basics of paying bills. So, how about I just give you the basics...

We arrived home on Sunday following a very fun flight with Charlie. Billy picked us up and drove us to the Brooks's house where we had chili and a great visit with the whole extended clan. We were headed home, though, when Caty drew me aside and expressed concern over how she was feeling.

After we unloaded the car and unpacked the basics, I headed to the hospital to meet Caty and David. The end result of that evening was the knowledge that indeed, Caty was in the process of a miscarriage. I really am just numb at this point. I grieve for her and their loss as well as ours. Inside I want to just scream and say, "Seriously??? How much more???" but that really isn't helpful.

The littles had school Monday and Tuesday, so those days were spent trying to unpack, put away, and create a path to my desk. My office is the room that catches all of the "I don't know what to do with this" or "someone is coming over so let's hide everything in here." Also, I have never seen the refrigerator that empty, so, out of mercy to my teenage boys especially, I spent the next three days visiting Wegmans, Walmart, Costco, and BJ's so a mutiny was not forthcoming.

Tuesday, the Buick broke down in Fredericksburg, so after dropping off that day's load of groceries, I picked up Billy. It was our 25th anniversary, so he took me to dinner at Bravo! and a movie.

Which brings us to Wednesday evening. Abigail had conscripted help, baked us a turkey, and in essence, salvaged Thanksgiving for my family. She and Linda delivered it all Wednesday afternoon. I truly have no idea what my family would have eaten that day had they relied upon me to cook. (In the last month, I think I have cooked maybe three meals. Maybe. Probably more like one or two.) There just is no time.

Thursday was spent with family and friends. It was probably the quietest Thanksgiving we have had since our first year (which was actually our first week) of marriage. (Dallas lost so it was indeed a great day!) Abigail came over in the evening and endured an amazingly tame game of Buttons. She handles our loud, crazy family remarkably well. :)

Which brings us to Friday. Caroline and I met Cailin's mom in Fredericksburg to do some shopping. We managed to avoid the worst of the crowds by going to Southpoint which was perfectly fine with me. Shopping without a list is stressful for me, (Yes, I am rather OCD.) and who had time to create a list? But Caroline was in heaven. Justice for Girls, Kohls, and 5 and Below are a dream day for that child. Somehow I missed the shopping gene, but Caroline definitely received hers.

Friday afternoon was spent at the laundromat with the littles. (When I arrived home, the washer was not functional. So, we await our favorite repairman whom we know way too well!) We used 11 washers and 8 dryers. Seriously, the laundry was just a little out of control!!! :) Home to dinner, starting an IV, and packing.

Saturday, we headed to Richmond to the airport. Someone from Billy's company had donated her frequent flyer miles to us. There had been insufficient time to request an Angel Flight (It takes 5 business days, but we only had two and a half.), so we were going to have to either drive or fly commericial. Driving is so not a good option for William (I already bought that t-shirt!) and flying commercial is expensive. But the gift of airline tickets was priceless. We were also blessed with hotel points sufficient to cover our week in Cincinnati. A car was also provided. After such an incredibly difficult week, not having to make arrangements or funds to manage this week truly left me speechless. (Which I realize is a feat!) :)

Will handled the trip moderately well. He did need another IV on Sunday afternoon, but so far he seems to be holding. He certainly does not look great, but he isn't totally lethargic either (at least not until you mention schoolwork!). I am hoping that a quiet day today will provide him with the rest he needs to endure the next two days. We have to be at the hospital by 8 tomorrow morning for an MRI and by 9 Wednesday morning, so this could get challenging. He does not do mornings well. :)

So for the moment, we are hanging out, living an almost "normal" life. Yesterday at church, it was truly amazing to feel so at home. We chatted with friends, made plans for the week, and worshipped as we would have in Virginia. I feel like I have two lives. One in Virginia with my family, and one here in Ohio with William. If Will actually gets better and we no longer have to travel here, I will truly and deeply miss the friends we have made here. Yesterday, Becky R was so funny...she said that when I am not here, it's like I am out of town. I am simply grateful that, considering the amount of time I spend here in Cinci, that I do have a "home" and great friends.

Saturday, November 20, 2010

Yesterday was pretty crazy. Will had remained stable, so it was finally decided that he could leave the hospital. He was inpatient for 11 days.

Becky G called me that morning and invited me to lunch with some women from church. It was so lovely to be normal for a few hours and to chat about life and listen to the adventures of other women and their families and to laugh with a friend. Laughter is such a gift.

I returned to the hospital and Will was finally awake and actually showered. I helped redress the stoma (the opening through which the trach was placed...it is still healing) and Mica, our nurse from the previous surgery who also was his first nurse on this trip, deaccessed his port. We were finally ready to leave. Billy and Will loaded the car while I headed to the pharmacy to pick up a few prescriptions.

We then headed to pick up new brace pads. Since Will is going to be in this neck brace at least another few months, he really needs new pads. The old ones are not so cushiony anymore and the brace is beginning to rub where it should not. We know the pads for the old, smaller brace were expensive ($50) so I expected these to be more expensive...but $200 per set??? No way! He needs the pads...so what to do. I called Will's case manager with our insurance company (insurance does NOT cover these.), but she is unavailable. The receptionist is about as apalled as I am, so she calls someone while I am on the phone with Larissa's voicemail. Alas, I have no answers, but she said that they will sell both sets to me for $200 total. Somehow that sounds so much better than $400...but still!

We leave the brace shop, and it is now 430. We are supposed to meet Becky and Keith R at Dixie Chili in Newport for dinner. Will is feeling great, so we head that direction. (We beat them there so I found a great yarn shop next door that I got to browse through!) We had such a pleasant conversation over dinner, then we headed back to the RMH.

We packed up everything we did not need so Billy could take it with him today. Then we sat down and watched the 4th Harry Potter movie. I am exhausted and so ready for bed but Will is going strong. :)


Billy did indeed leave early this afternoon. He has a very full car and our room is significantly more empty. Charlie, our pilot on the first leg tomorrow, has checked in with us and we meet him at ten at Lunken. The hospital shuttle will pick us up at 915 and drop us off at the airport. We should be in Fredericksburg in the early afternoon.

It will be very good to be home...but there is also concern. Will will have to return in a week, so we have three days of travel in less than two weeks. That could be challenging for him. I am only home for one week, and there will be lots of ground to cover in that week so it will be stressful.

There are apparently volunteers who are willing to make most of our Thanksgiving dinner and deliver it on Wednesday. That is such a huge blessing. I know I will need to go to the grocery store (I have been gone for basically a month!), prepare for yet another week long absence, order meds and IV supplies for Will for this week as well as our week of travel, make reservations for Cincinnati (AGAIN), and repack. Then there is this whole, "Did you know that Christmas is only 35 days away?" Are you SERIOUS? I can't comprehend Thanksgiving and now I have to consider Christmas. I am so in trouble. :)

So, Will and I are just about packed. We are heading home to hang out with the family for a week, and then we head back. I really should consider having a locker at the airport where I leave one set of clothes and my very essential hair dryer so I can just fly back and forth without packing the kitchen sink every time. :)

Thursday, November 18, 2010

Ronald Mcdonald House Charities of Cincinnati

You have heard all about Will, the hospital, our escapades here, and the people here, but you really have not heard much about the RMH.

When we stayed at the RMH last time (April), we were in the new section. Will had recently been discharged from the hospital and we were pretty exhausted. We really did not interact with anyone and we were only there a few days.

This time, however, we have been residents for more than two weeks. While Billy has slept at the hospital, I have not because my lungs so do not appreciate the incredibly dry air. So every night sometime between ten and eleven, I catch the shuttle back to the house. At this point, having caught this shuttle every night for the last ten nights, I kinda know the shuttle drivers...and they never fail to ask how William is.

When we return, we walk in the main door, and the day manager's shift is just ending. There is a board on the wall with everyone's room number, last name, and their city/state/country of origin. When you arrive, you move your little heart magnet to "in" versus "out" so they know who is in the house. But when you do, you have to walk right in front of the desk, so generally, at that point, Carol or Natalie will look up and say hello and ask about Will. It could end there, but frequently, it doesn't. I look forward to walking in at night and chatting with friends and finding out about their days...instead of walking in, talking to no one, and going to my room. To feel not quite so alone at the end of a long day makes it feel so much more like home.

Last night, I ended up taking the very last shuttle. Carol, who was supposed to have the day off, was driving. I was the only resident to ride then, so I hopped in the front and said, "What are you doing here?" She explained that Natalie had gone home sick, so Julie filled in for Natalie, and Carol filled in for Julie. So we chatted about how they were, how the food pantry organizaton was going, Carol asked about Will and his port, and she told me she had been concerned when I hadn't shown up yet, and if I hadn't been on this shuttle, she really would have been worried. Really?!

When you live in a communal home, issues can easily develop. You have residents who don't bother to clean up after themselves; residents who are ungrateful for the blessing of a nice, clean, inexpensive place to stay incredibly convenient to the hospital; and residents who are just lazy. But then you have residents like Elizabeth who give up their washing machine at ten at night because your child has surgery early the next morning and she can do her laundry the next day without it being an issue. Or Janelle who has devoted ten years to caring for her son who suffered significant brain damage in a car accident and yet she still smiles and prays for and encourages other parents. To have spent several hours chatting with these people who struggle over the health of their child yet continue to press forward, is beyond description. To know that while our struggles may not be the same, but they understand the toll it takes on not only you, your marriage, and your entire family creates a bond of friendship that is unexplainable. You don't have to explain the hardship because they also live it. While it did take effort to feel at home and to develop friendships, the result of that effort was far beyond my wildest expectation.

To say this home has been a blessing is an understatement. To say I will miss some of the volunteers/employees/residents is also an understatement. To be grateful for the opportunity to have stayed here, met these people, and shared a few hours of conversation and friendship is indescribable.

Wednesday, November 17, 2010

We Have a New Address

Sorry for no update yesterday. It was another crazy day and by the time I finally got online last night, I wasn't coherent enough to actually write an update. When you envision a hospitalization, you think of sitting in a chair at your loved one's bedside, reading or knitting or chatting. That is SO not the case here. I feel like I have run a marathon at the end of the day.

So yesterday...I walked in the room and noticed that Will's blood pressure was 65/48. I promptly found the nurse and requested the bp's from the entire night. This is not a good trend. Then another member of the venous access team arrived, introduced herself, and said, "I am really good with ports." to which I responded, "You are not touching that port until someone can tell me what is wrong." I was very done being pleasant. I had requested a port study when this started, and that was denied. I had requested a chest xray that showed it was "fine". So we are gonna wait on the surgical consult which still has not appeared.

Well, the neurosurgery nurse practitioner walked in and asked how things were going. I filled her in on the blood pressure issue, the port issue, the lack of response that I felt was being provided, and this woman knew how to make things happen.

Rounds were beginning, so we walked out into the hallway and listened to the basic report of Will's last 24 hours. No one thought anything of the blood pressure issue. The attending was of the opinion that he was finally going to move Will to the floor, when the nurse practitioner caught my eye. She quickly informed him that neurosurgery was concerned about the port issue and if this child was headed for further surgery, requiring intubation after just having been trached, well...really...do we want to move him? Oh, and by the way, where is the surgical consult? At this point I am starting to cry...the attending looks at me, and I quietly inform him that after being off his IV for ten hours the previous day, we had seen a drop in blood pressure that no one caught. "Oh! That is the first sign of decompensation." Um, yeah. So he ordered a bolus of normal saline that I then stated could only run at 250 ml/hour. They have really had it so easy with him. :)

The surgery consult arrived, compared last night's xray with previous xrays and said, "Hmm...the port moved." So he orders a port study which of course requires us to access this port. I have talked to David Charles who informs me that it can be accesssed under fluoroscopy. So we agree to the port study and request an order for significant pain medication for William.

The final result is that the first nurse who tried to access it apparently missed the port and the needle punctured surrounding tissue which promptly became sore and swollen and the swelling moved the port. The port study does show that the port is fine, the swelling has reduced, and the port is back in place. It does not feel like it used to, but it can be accessed. After the port study, I looked at the CVC team and said, "What are we going to have to do to get permission for me to access this port instead of a nurse?" I have no desire to repeat the previous 24 hours.

So, the port is fine, I was able to access it, the attending was able to finally evict us from ICU, and we are now on the neurosurgery floor. He currently has hives...again...and we have no clue why. So we are grateful they have medication that helps him stop itching. :)

Monday, November 15, 2010

One Seriously Long Day

This will be brief. Maybe. :)

When you have multiple specialties involved in one procedure/hospitalization, it can get challenging. Will is still in ICU because the neurosurgeon does not want him on the airway floor, ENT will then not let him out of ICU until 24 hours after the trach is out (which occurred this morning), and so this morning, they both said, "He can go home tomorrow...to Virginia." To which Endocrinology said, "Um, not only no..."

Endocrinology was called in by the previous ICU attending (They change each week.) so that Will would have some level of continuity of care when leaving the ICU. Dr. T at home had emailed the previous attending to provide a level of instruction regarding how to care for Will. The two points that were reiterated were, "Move slowly. Do not be in a rush to discharge him." and "Listen to Mom." Oh, well, that is a vote of confidence I am just not sure is wisely placed. :)

Will is still on TPN and is taking in less than 300 calories a day. He needs to orally consume 2600 calories, or at least close to that, in order to completely come off TPN, according to endocrinology. So they have decided to slow the rate of TPN, encourage Will to eat more, and watch him. The duration of observation is a complete unknown.

The major issue of the day...the needle in Will's port through which all of his tpn and fluids go has to be changed weekly. So, today was the day. He was deaccessed, took a shower (Oh, he looks and smells so much better!), and then he was supposed to be reaccessed. When the nurse started to reaccess him, she inserted the needle, there was a pop, and Will started crying. This child does NOT cry over being accessed. He seldom even flinches. But he was crying. She kept trying to adjust it, and I finally told her to remove it. She did, then called the special team who works on central line access. Pam arrived and eventually the decision was made to once again attempt to access. So, she offered for me to help since I access him three or more times a week. Well, when I felt around his port to actually insert the needle, the port felt funny. (It is totally under the skin; you don't see it.) I could not find its edges like I normally do, and the top felt odd. I had no desire to put a needle in Will when I could not guarantee success, so Pam tried. It was yet another disaster. We eventually went for a chest xray, which showed that the port is in the correct location. So tomorrow morning, we will talk with a surgeon to determine what our options are. This is not a complication that I even contemplated. We cannot leave Cincinnati without IV access.

So, they had to start a peripheral line (a regular IV in his lower arm) in order to restart the TPN and fluids. It took three attempts to make that happen.

Needless to say, it was a very long day.

So tomorrow, we meet with the surgeon, and we will likely be moved to the neurosurgery floor til everyone agrees to discharge us. Apparently, they want us back in two weeks from today for follow up. So if we don't get out until later this week, and we have to be back ten days later...do we stay or do we travel twice? What can Will handle? Stay tuned for tomorrow's episode of' "As Will's World Turns."

Sunday, November 14, 2010

You Guys Are Still Here?

This morning started off pretty rough. The ENT team rounds around 645, so we knew the trach change would be early. So we had a game plan. At 6, Will was to receive his oral pain medication and just before the team started to work on the trach, he was to receive a different narcotic in his IV. Well, apparently he did not actually go to sleep until 4 am, so rousing him at 6 was a challenge.

So, the team came in, IV pain meds were administered, and the smaller diameter, shorter trach was inserted in place of the first one. Everything was fine. For five minutes. The team left. Will moved in bed. I noticed that an awful lot of the tubing was visible. Hmmm...I head for the nurse. By the time I am back in the room, the tube is totally out. This is not the way it is supposed to be!

The nurses and RT arrive quickly. They reinsert it and call the ENT team. The fellow arrives and decides that a longer trach is needed. Ya think? :) There is a discussion as to which new one to choose. The diameter needs to remain the same, but it needs to be longer than the current unstable one. They finally decide, replace it again, and we are finished. A little excitement goes a long way.

And then there was tonight. Almost exactly 12 hours after this morning's fiasco, the trach is again out. Apparently Will has a significantly sized trachea, the stoma (the hole that they made for the trach to go through into the airway)is large, and the trach is small.

Needless to say, Anna, our nurse from earlier in the week, popped in and said, "So ya wanted to end the day the way you started it?" Um, it wasn't OUR plan. :)

The trach is back in. The ENT fellow arrived...again...and scoped his airway...again...and stated that there was some trauma (meaning irritation: bleeding and redness) in the airway from the irritation. The decision to remove the trach will be made in the morning.

Will is still on TPN for nutrition. He just is not taking in many calories. There is discussion on whether he will be discharged on TPN or whether he will stay inpatient til he chooses to eat. Once the trach is out, we will be moved out of our very nice spacious room to the regular neurosurgery floor. From there, the endocrine doctors will begin to follow Will's progress. Dr. T at home has sent a note to Will's physicians here, and the ICU physician wants more than a pediatrician to follow him once Will leaves her jurisdiction.

So, at the moment, we have no clue when we will be moved from ICU but anticipate it to be Monday or Tuesday. Being discharged from the hospital is not even being discussed right now, so I have no clue when we will be home. Until then, we hang out in the hospital room, I sleep at RMH, and we wonder why we are so tired. :)

We are thankful that this has been a fairly straightforward hospitalization. Progress may be slower than anticipated, but I can only imagine how slow it would have been if the full scope of the surgery had been performed. We are very grateful for cautious physicians who respect the typical instability of William's metabolic balance and are doing their utmost to avoid an epic crash.

Saturday, November 13, 2010

What Day Is Today?

The days have officially begun to blur. But whatever day it is, Will is doing significantly better.

This morning, I arrived just in time for rounds where basically they said, "Goals for today: Status Quo." We basically are hanging out in ICU waiting for the trach to be downsized. I have no idea when they will move us out to the floor. We love our nurses (all but one) and are content with their level of vigilence, so moving out means ratcheting back up the level of caution that we feel in dealing with Will's issues.

When I walked into the room, Will was smiling and said, "Hi." No way. The boy spoke. There goes the silence! He doesn't talk a lot because it does take effort, but he is slowly becoming his goofy self. Not long after I arrived, though, both Billy and Will fell asleep. I sat here quietly knitting, watching them both sleep, until I finally decided to head back to RMH to wash the increasingly large pile of clothes.

At RMH, we are responsible for caring for our room. General cleaning and laundering of linens is our responsibility. Our sheets and towels had kinda been neglected for about ten days, so they were washed as well. It is amazing how normal activities are not all that "normal" for me.

When I headed back to the hospital, Will was sitting in a chair watching something on his computer. We hung out for a while then Billy and I ate our dinner in the parents' lounge. Parents are not allowed to eat in the ICU rooms. When we returned, Will actually signed that he was hungry. (Those old days of signing with Ben have been incredibly useful recently!) We ordered up some soft foods and after two bites he decided to go back to liquids. Coughing food out of your airway is challenging. :( So we have now ordered a protein shake that they make specifically for William. Speech pathology will visit Will on Monday and help him figure out how to eat again. Until then, he can have all the smoothies and iced tea he wants. Just no Five Guys burgers. :)

There are several steps involved in removing the trach. The first is to occur tomorrow morning. The ENT team will change out the actual trach tube and put in a smaller one. If this goes well, then they will install a valve, then they will totally plug it to see how he does. Each step requires 24 hours of observation.

The hospital air here is extremely dry which is causing me issues at the moment. My asthmatic lungs are getting pretty irritated. The time spent cleaning and doing laundry today at the RMH helped immensely. It doesn't hurt to breathe anymore, but the more time I spend in Will's room, the harder it gets which makes life a little challenging. Billy has been really helpful and has encouraged me to sleep at the RMH instead of in Will's room, so except for the first night, Billy has handled all of the nights. It has been really strange to leave Will at the hospital, but I have been grateful for the rest and the reprieve. I did not realize how much I had been holding my breath, metaphorically speaking, until today.

So, another day passes with a beautiful sunset outside of our ICU suite. (We totally have the best room in the entire hospital! It is like a hospital room with an attached sunroom.) The thought of leaving our comfy nest and our nurses whom we love is sad indeed. Home sounds wonderful, but another room without the spacious, sunny accommodations will be an unwelcome change. :)

Friday, November 12, 2010

Post Op, Day 3

I walked in this morning, and William was just falling asleep. Billy stated that although last night's nurse was significantly below the typical standard, Will had had a good night...a restful night. Cool. He looks so much better this morning. I think we finally turned that corner that says, "I think we may survive this after all."

Dr. C, the neurosurgeon, ordered physical therapy for Will, so he was hooked up to portable monitors and walked around the unit a couple of times. His sense of humor, long absent, is slowly beginning to resurface. He pretended to wobble a couple of times and then grinned when the physical therapist went to grab him. He is far from his normal self, but an occasional glimmer of Will is encouraging. He also donned pajama pants and a t-shirt for his excursion, so ditching the lovely hospital gown I am sure makes him feel somewhat better.

Will has officially given up on talking with the trach which is difficult with no valve, is difficult. The energy required to do so is significant. So, he communicates with sign language and a white board. Some of his signs are entertaining. Yesterday he was asked a question and waved his arms around, which made zero sense to us, but it was really funny. I'm not so sure he appreciated our amusement. The white board is a huge benefit, though, because he can tell us what he needs/wants. But I must admit that it is extremely odd to be in a room with him and for there to be no chatter. All we hear in here is his humidifier, his cough, and the occasional noise outside. Silence is not a normal part of our lives!

Food remains an issue. He is totally not interested. No one is in a hurry to rush him, so for now, he is to remain on tpn and we will let him decide when he is ready to eat. A 14 yo boy will not long survive without a bacon cheeseburger, so I don't expect that the trail to Five Guys will grow too cold.

Will was running a healthy fever yesterday, so they did run some cultures. He does have an infection, but given that the surgery was in his mouth, that is so not surprising. They have started antibiotics and anticipate that the infection will resolve.

It is really difficult to remember all the things that transpire throughout the day, and I tend to write the updates after 8 pm, so hopefully you get the sense that progress is being made, but we are still far from home. We won't be moved out of ICU until at least Sunday, the trach will be in until at least Tuesday, and I imagine that we will have to stay til that is fully resolved which could be up to 7 days after it is removed. That puts us eerily close to Thanksgiving before being able to travel. Billy and my anniversary (25 years!) is the 23rd, so it looks like we may/may not even be in the same state then. While all of that is disheartening, it is with relief and joy that we can watch the progress and realize that this surgery, long dreaded, is officially behind us. So now we wait to see what effect it will have on his overall condition...

Thursday, November 11, 2010

Post- Op, Day 2

Last night, I had a sore throat...the kind of sore throat that says, "You are officially doomed for a lovely cold." I was so frustrated, I but knew that I really needed lots of Vitamin C and some real sleep. Billy escorted me downstairs, and a security guard walked me to the Ronald McDonald House where I promptly fell soundly asleep.

This morning, the sore throat is not gone, but I have had thousands of milligrams of Vitamin C and am hoping that this will pass without developing into something ugly. Getting sick right now would be really bad timing.

So I arrived at the hospital with a cup of hot tea and found that Will had had a pretty difficult night. The secretions from the trach are causing him a fair amount of grief, and at one point, he just could not clear them from his airway. The respiratory therapist on duty last night was wonderful and stayed and worked with Will til things were more stable.

Overall, Will has had a better day and is slowly coming back to life, but the pain medication issues have been a challenge. They switched him to Dilaudid yesterday, still a narcotic but longer lasting than what he had been on. However, upon administering it in his IV, he complained of about ten seconds where his whole body felt like it was burning. Then he broke out in hives which lasted about 45 minutes. They then switched his med again, to an oral liquid med, but again he had hives. So the pain team was once again called.

The doctor in charge of his pain meds basically stated that unless Will's reaction was anaphylactic, then we should not list the reactions as allergic. They are frequent side effects that can be treated with an additional drug. My only concern is that if his body is utilizing energy to deal with a reaction, then that is energy that he doesn't have elsewhere. Since his body doesn't make sufficient energy on a good day, do we really want to present him with an additional challenge? Ah, the joys of specialists who see only their specialty.

So, we did give Will the pain med in a pill form, hoping that the reaction may have had to do with an additive in the liquid. So far, he is doing well. He is struggling with belly pain, but that could be his gut waking up. (Anesthesia slows the gastric tract way down.)

So, tonight, I am being once again sent to the RMH to sleep in the hope of not becoming truly ill. Billy is doing an amazing job helping Will with his trach and in general care. No 14 year old boy wants his mama to help him to go the bathroom.

In general, Will is doing better. There are still plenty of challenges that need to be addressed before we can leave the ICU...things like actually eating. He is still on tpn which is basically nutrition that they administer through his port. There is also the pain management issues as his pain is an ever moving target. Also, as the fluids from surgery leave his body, and his pain lessens, we will need to watch his blood pressure to ensure that it remains stable.

Becky R brought us an amazing dinner, but we hardly got to see her as she arrived as the pain team and the orthopedic walked in.

So, that is our day in a nutshell. Each day should get a little easier...Tomorrow we will hopefully conquer some food issues, which include learning how to swallow food down the right hole. The trach changes the pressures when you swallow, and his palette now has a different shape, so that affects eating and drinking. Today he conquered drinking which was huge. (Think about how you drink through a broken straw. That is somewhat the way he is having to function...)

Wednesday, November 10, 2010

Recovery is Challenging

So last night, Will struggled with his trach. He felt like he couldn't breathe. After lots of suctioning and a sedative, he finally slept for a little while. He has essentially given up on trying to talk with it, and is now using a white board and marker. While slow, it takes a lot less effort and is much easier for everyone else to understand.

At this point, we still have no idea if Will will be discharged with his trach or not. The ENT resident today stated that they will reduce the size of the trach tubing on Sunday. That will make it easier for him to swallow and talk.

Overall, Will has started shutting his eyes when people come in to chat...and lots of people are in and out of his room. This place is like Grand Central Station today. Speech therapy wants to ensure that he can swallow safely with the change of palate and the trach, every specialty has their own residents who visit, then the entire team of residents visit. With three different specialties and the regular ol' pediatric ICU residents, we see lots of residents. Pharmacy has visited trying to determine how to manage his meds since he doesn't wish to swallow. Nutrition is in preparing for when he will be able to eat and trying to figure out what he can eat as well as figuring out the TPN (nutrition that they will put into his port tonight to at least give him calories) for tonight. The pain management team is in as they adjust his medication to keep him comfortable. His nurse is in regularly (read as in constantly) to suction the trach and help care for William. That leaves very little downtime. It also means that Will is more than done listening to everyone talk about him and discuss how difficult this is. So, he is now sitting in a chair, watching Discovery channel, and closing his eyes when people want to chat with him...."If I don't see you, you don't exist."

Yesterday is still fresh in our minds as we contemplate the incredibly gift of a much less invasive surgery. The fatigue of today is very present. While yesterday was filled with relief and thanksgiving, the reality is that this was still a huge surgical procedure with a huge recovery. Preventing a metabolic crisis is still high on the list of wishes for the day.

Thank you for the prayers and encouragement that have been emailed, mailed, and texted. To know that we are loved, supported, and prayed for is a huge encouragement.

Tuesday, November 9, 2010

What a Long Day

We have spent almost an entire year waiting for today's surgery. It is so hard to believe that it is actually over.

While we had been told that they were going to split his tongue, lip, and lower mandible, they did not. What an amazingly huge blessing. When Dr. Bilmeier came to talk with us, he said, "I have some good news." That is not something we generally have in abundance. But this really was huge. They did go through the upper/back of the palate, so that is very sore. Will does have a tracheostomy, so that has a whole new set of challenges. But his face is not at all disfigured. The only drawback at this point is the realization that he may need further surgery to repair his palate. As things heal, he may develop a nasal, cleft palate type of speech...which they can correct. So overall, this was very good news. The recovery will be significantly easier.

Will has quickly learned how to cover the trach opening so he can talk. He is difficult to understand, but is learning how to manage it. He also can fingerspell, so that was handy in the beginning.

We had lots of company today so we were never alone. Becky G came with an amazing lunch. Matt joined us. Then Beth P also hung out with us. Surgery ended, they all left, and we waited for him to head to ICU. While we waited, Becky R brought Olive Garden (pasta!) for dinner. We never had to think about food and were totally distracted with friends and great conversation. It amazes me (and those with whom we come into contact) how the body of Christ has supported and loved us through no merit of our own.

So we finally got to see Will. He started finger spelling but decided that was painfully difficult and quickly became expert at covering the trach so he could talk. He never misses a beat. What he goes through and just keeps coping is astounding.

We skyped with the kids back home who were also able to say hi to their brother. That was very cool...we are so glad that this hospital is finally wireless!

We are in ICU in a corner room that the nurse laughs and calls a suite. It is a huge room with huge windows and an amazing view of the sunset.

Will is resting fairly comfortably. He did evict the contents of his stomach once, but zofran quickly fixed that problem. :) What a great drug. Billy and I are exhausted and are going to crash soon. The room is huge, so we are actually able to both stay...

Surgery Update

For those on our church's prayer chain, excuse the redundancy. Under the circumstances, it was expeditious to copy and paste. More will follow as time and opportunity exist.

The tracheostomy was completed. No clue how long he will have the trach, but we know a minimum of five days.

Huge blessing: The plastic surgeon did not have to deconstruct the jaw, so minimal disfigurement has occurred, and the recovery should be easier.

The bone that they had to remove was apparently soft. No one knows why. But the remaining structures appear normal.

We are waiting on the plastic surgeon to close. Due to the opening that he had to create, there may be need for further surgery as a speech deficit may occur. Time will tell.

So, overall, things went very well...better than anticipated.

Billy and I were blessed beyond measure...Becky brought lunch and stayed throughout the majority of the surgery which kept me from crying all day. It was a relief to laugh and not contemplate what was happening with William. Matt, pastor of Faith Pres, stayed with us as well. We even had another acquaintance drop by and visit briefly. To be so far from home and have such support is truly a gift of God and a testimony to the body of Christ. We are indeed blessed.

Monday, November 8, 2010

It is Just Getting Started

Will is officially a resident at Cincinnati Children's Hospital Medical Center. He has his lifeline reattached, IV l-carnitine being delivered on a regular schedule, CT scan completed, and now we wait. Surgery is scheduled for 730 AM and will go all day.

We were escorted to our room, and in walked Mica, our favorite nurse from last time. She remembered us which was very cool. Will was in rare form, harassing the poor residents and nurses, but Mica can hold her own against him. The neurosurgery resident was not at all confounded by Will's antics, so Will has a tough audience this go round. :)

Since it is the last meal he will have for a while, we picked up some 5 Guys for him and brought it to the hospital where he proceeded to inhale it, literally, in about six bites. How does he do that??? Why do teenage boys become human vacuum cleaners? I know that I taught them manners, but somehow between the ages of 13 and 20 they seem to see food and all rational thought of careful chewing flies from their heads!

So we are hanging out in Will's room, watching the clock tick, and considering which game we might play. There is a football game on tonight, so I did pull rank and tell him what we were going to be doing at about 830. However, I need to head back to the RMH to handle some laundry so he may escape the football game after all.

Billy will stay with Will tonight. I am actually going to sleep at the RMH...it feels a bit odd to leave Will at the hospital, but on the other hand, I am so very tired. The last few weeks have been so challenging and the sleep so limited, and this phase is just getting started.

Thank you so much for the prayers, emails, cards, gift cards, phone calls, and support. We are astounded and so grateful. While sometimes this physically is a very lonely experience, we know that we are not alone. Thank you for walking this road with us, even through the dark, spooky forest. :)

Sunday, November 7, 2010

What did you say? Would you please look at me?

Those are words I have heard a lot over the last week.

I had not really noticed a huge change prior to this trip, but then, we hadn't really walked around much. We seemed to have had a lot of face to face chats. I had noticed what appeared to be rudeness...Will talking over other people. But on this trip, if we are walking side by side, Will just could not hear me unless I turn my head and talk directly to him.

I finally asked him about it today. His response was a matter of fact statement that he had noticed the change but hadn't said anything. Are you serious?! This is not the kind of thing that you don't just not mention. So, yes, in locations with lots of background noise or if someone isn't facing him, then he struggles to hear what they are saying. He doesn't feel like he has fluid in his ears, muffling his hearing. He just is struggling to hear.

So, just one more item in a long list of concerns...

We head to the hospital at noon tomorrow for admission. They will be starting his IV of D10 1/2 normal saline and IV l-carnitine. He has a CT scan at 3. Surgery is at 9 am Tuesday.

Billy is enroute now. Thanks to a couple of tractor trailer accidents, he will likely not arrive until around 1 am. He is having a bit of a long day...

Saturday, November 6, 2010

Home is Where the Heart Is...

We moved to the Ronald McDonald House, and it was a challenging process. We had lots of stuff, lots of stairs, and a son who was feeling significantly less than stellar. So, he crashed on the bed and I climbed the hill with my arms fully loaded, climbed the stairs to our room, put away stuff, then repeated...multiple times.

But the physical challenge of moving was not what bothered me. It's funny, but I really struggled emotionally. It finally dawned on me, that in the last four weeks, I slept at home maybe one of those weeks. And I won't get back to my very own bed until sometime later this month. But it isn't my own comfy bed that is the problem, it is the sense of home. At the hotel, we had a kitchen, living room, separate bedrooms, and a bathroom. It wasn't home, but it resembled home in its set up. Here at the RMH, we are basically in a communal living arrangement with a bedroom that we share (think hotel room). No one talks to anyone here, yet we all share the same communal space, so it is just not homey. They try to make it so, but it just isn't.

Family is one of those difficult to define concepts. You have this emotional bond with the people who share your space, and you are accepted and loved because of that bond. It doesn't matter where that home is, but knowing that your family is there is sufficient. And knowing that they love you irregardless of whether you are having a bad day is beyond priceless.

So, here we are in the RMH, close to the hospital...the best possible scenario. We are totally settled before the surgery. But all I want is to be home.

Friday, November 5, 2010

Mamabear Strikes Again

I apologize for the lack of info. It really has been a long few days. As a result, you get to read a very long post. :)

We saw the orthodontist which was...entertaining. He is making a mold of Will's mouth and a splint that will help to wire Will's jaw back together after surgery. He is obviously a pediatric orthodontist. When he finished with Will, he said, "Think I have all the pictures I need of your toothies." Will was amused.

We then killed an hour and a half then headed to the appointment with the plastic surgeon...where we waited an additional two hours past our appointment time. Fortunately, he was totally worth the wait. He was so kind to Will. Even as he explained the horrid details of what is to come, he did it with a gentleness that was very appreciated. The full scope is truly just ugly. Basically his lower jaw will be split down the middle (including his lip), his tongue will be split, and he will have a tracheostomy. The trach had been removed from the plan, but Dr. Bilmeier apologized and stated that it was indeed necessary.

After that appointment, I looked at Will and said, "I wish we could pretend it all away." He replied, "I already do that." Compartmentalization. I am a pro at that, and apparently so is he. So, we pretended it away and then went for food and retail therapy. :)

Will has been wanting a Cincinnati Reds hoody, so while here, I had hoped to find him one. Well, we went to a bunch of stores. You can find men's medium through xxl, but you cannot find a small. Apparently they don't make a small. So we looked for a youth xl. That is literally the only size we could not find. So, the internet quest begins...

Thursday we had the day off, so I let Will sleep til he awakened (which was 1 pm!!) and then we headed to find Will a coat. We bought him a coat last December, and I bought it a size larger than he needed so he would have it this year. He brought it with him...but when he put it on, his wrists are forearms were just a little too visible. So we obviously need a coat, and taking him right after surgery is simply not kind. So we went shopping...again...then headed to Whole Foods for groceries. We dropped those off and I made the daily call to the Ronald McDonald House and discovered that we have a room! Cool! But we have to leave immediately to register in time. Not so cool. It is rush hour and will take more than 30 minutes to get there.

Today was the anesthesia pre-op appointment. I was able to voice my concerns regarding Will's medications and food issues post-op, so she did include that in her email to the surgeons involved. She also recommended that we make an appointment with Dr. Putnam, a gastroenterologist and guru of EE. So, I called clinical concierge and made my request for a miraculous appointment in the near future. She is actually hoping to get Will seen while he is inpatient. No promises, but she is trying. That would be mimraculous because his appointments are apparently a treasured commodity. :)

Somehow Mimi, Dr. Crone's assistant, received a call that I was unhappy with anesthesia. Interesting, because I am not...I am unhappy with my unanswered questions regarding food and meds post-op, but I am not unhappy with anesthesia. So I told Mimi my concerns and she kindly patted me on the head and told me that all will be fine. Um, if you know me, a head pat is so not going to do it. :)

I recognize that I can be a full fledged mama bear regarding William. But when you have all of these different specialists focusing on their own specialty and no one looking at the big picture, then someone has to see that big picture. Fine. Will will have surgery, be deconstructed, then reconstructed. What happens when he doesn't receive his bp meds because he can't take them orally? Seriously, which ones of these can be given IV? Someone needs to be considering the options. The consequences of NOT considering that little detail are significant. So please do not pat me on the head. My cub is in danger and you do not want to be the one standing in the way of him getting what he needs. :)

I think she finally understood that I am not being a pain in the neck just cause I can. I really have valid concerns and they need to be addressed. They are surgeons, not physicians who know how to handle mito and autonomic dysfunction. I don't expect them to understand it all. But I do expect them to ensure that their patient is receiving the meds and services necessary for his well being. So, I hopefully gave them the nudge toward the bigger picture and can put my claws away...at least I hope so.

Tuesday, November 2, 2010

We're Baa-aack!

It was a bright and windy day...and we safely made it to Cincinnati. It took a little longer than normal due to head winds on the first leg of the flight, but the second leg was speedy. :) We were met at the airport by Matt, pastor of Faith Pres, and Becky G. Will, on the descent of both flights, experienced pain behind his eye and a pressure headache. We also went for much longer than normal without food, so he was not feeling well at all. So Becky took my list and headed to Walmart while I headed to the hotel to start an IV.

We have since had dinner, are waiting on Will's IV to finish, and are settled in and ready for the appointments tomorrow...We see the orthodontist and the plastic surgeon.

But on another note...over the course of the last two weeks, we have been shockingly blessed. As we continue to travel so constantly, there is this strain between budget and keeping Will healthy. Do we stay in a hotel or with friends? Do we stay close to the hospital or further out where we can obtain a hotel with a kitchen? What is best for Will and what is best for our budget have become difficult choices. However, over the last two weeks, we have been blessed with gift cards, financial support, and the gracious gift of the use of a vehicle until Billy arrives on Sunday evening. I never would have dreamed that we would have been so incredibly blessed. I truly am astounded. There is no way to sufficiently say thank you...but thank you. To realize that we will be here for quite a while, and to not have to worry about how we are going to manage it, is a gift immeasurable. To be able to just focus on what needs to be done for William is a huge relief. To know that Will can eat Five Guys burgers every day if he really wants to before the surgery...well, that is a gift in and of itself. I may not understand why he may want to do that...but... :)

I need to pull Will's IV so we can both sleep. It has been a very long day. Thank you for your prayers and support and friendship. It has been a huge testimony to so many others as we explain how the visible body of Christ has chosen to walk beside us throughout all of this. We are indeed blessed.

Saturday, October 30, 2010

There's No Place Like Home, Toto

With strong instructions to appear at the sleep study Sunday night, Dr. T discharged us Friday. Her presumption is that Will's bp must be dropping every night at 4 am. One of the doctors who worked at MCV in their sleep study department is now at Cincinnati Children's Hospital, so if we need any follow up before the surgery, Dr. T's office will arrange to have us seen while in Ohio later this week. So, she has approved us for travel and for surgery.

At about the time of discharge, I received the call from Angel Flight. We have a flight to Cincinnati Tuesday. Our return is still uncertain, but since the date of our return is uncertain, I am not worried about it.

Upon our arrival home, Erlene had made dinner (for which I was so thankful...I have hardly slept all week!), and Charlene graciously rescheduled, then waited for me to show up for, my haircut. (Never underestimate the power of a haircut when exhausted.) :) I walked in the door, she hugged me, I cried, and she said, "Red or white?" I laughed, realized I would be there for an hour, and said, "Red." I had a good cry, a great hair cut, a glass of wine, and was able to breathe. What a long week...

Our IV company delivered all of our IV supplies for the coming ten days. Ever seen a styrofoam cooler the size of a footlocker? Well, it is sitting in the middle of my kitchen. So, apparently I am going to have to get all of the laundry washed, dried, boxed, and shipped to our hotel because there is no way we will make our weight limitation due to medical supplies alone.

My computer battery is dying...so the last thing I wanna say is thank you. We have been immeasurably blessed. While this was an unbelievably difficult week, our physical needs were met with such grace and extravagance. We not only have an incredible blender and sufficient financial resources with which to make the trip comfortably, but I bought zero meals at the hospital. My son-in-law made me an amazing breakfast twice, a friend brought stew and played the Wii with Will (and enough food to feed an army!), and another friend supplied Subway. So not only were the physical needs met, but the emotional support represented by each was huge. To know that we are loved and cherished is a gift immeasurable. The hospital can be a very lonely place. Thanks seems insufficient...

Friday, October 29, 2010

Tomorrow...Tomorrow...We will go home...tomorrow.

It is always a day away.

The 4 am drop in blood pressure that created the need for another bolus of fluid is likely going to cause a cancelation of our discharge. They said maybe we could go home tonight...and maybe not. We are waiting on Dr. Teasley to make that call.

She is fabulous, our Dr. T. Everything she is doing is to help Will successfully arrive in Ohio in time for his surgery. I am grateful for her steadfast determination and care for Will. But it is so discouraging to "know" you are going home in the morning and then...not.

The area in which we reside has zero windows. Neither of us has walked out of the hospital since we arrived Monday. Time has a way of standing still and marching on all at the same time. Will woke up from a nap a couple of days ago and said, "It is nighttime?" Yes. It was 8 PM.

So when we do finally get our walking papers, then I will let ya know.

Thursday, October 28, 2010

The Sun'll Come Out Tomorrow...Tomorrow...No, Tomorrow...

We are being discharged tomorrow...or at least that is what I hear...but I have heard those words since...Tuesday night. :) However, this time, I think it might actually happen.

Will's bp dropped again at 4 this morning. Another bolus was run and an hour later, it was still low. So, I suggested we run it a little faster and it started to climb. We doubled one of his bp meds, and finally, it is holding. As a matter of fact, it is holding at a level that we have not seen in a couple of years.

So since Saturday, he has had about 24 liters of fluid, loads of meds, and is finally returning to baseline. Surgery is still on. He will require a liter and a half of fluid a day while we are gone, though, to maintain his baseline. I have three days to get it all organized.

It has been a wild month. We had one trip to Ohio two weeks ago. Last week we had the grandkids and drove 740 medical miles and then drove to Scottsville to help Chelsea move. This week, Will and I lived at MCV. He and I leave Tuesday for as much as three weeks and arrangements for everything are very much incomplete. My younger kids wonder if I have moved. The older kids have become amazingly self sufficient. Erlene has totally stepped in and managed daily life for the littles. Angie continues to wash linens that never seem to otherwise get done. Friends and acquaintances and people totally unknown to us have made all of this a little more financially and emotionally bearable. So while it seems insanely overwhelming and exhausting, there are all of you holding up our arms and helping to carry the load for which I personally am so very grateful.

Wednesday, October 27, 2010

Hold that Thought

So we are not going home as hoped. Will's little blip is now a big blip. His bp is a bit unstable and he is not feeling well and is no longer eating. So, labs are being run, antibiotics started, nebs every 4 hours, and yet more fluids. The three liters a day is being supported by an additional 1/2 liter as needed.

We really have no clue what is going on other than he is simply unstable and we get to continue hanging out here with some cool nurses and our favorite doctor. Billy will bring the littles down this evening so I can see them and he can hang with Will for a little while.

Hanging out in MCV...

We are still inpatient at MCV in their Progressive Care Unit. The first night here was fairly quiet, but last night was very much not. Our "neighbor" in the curtained area next to us is a bit unhappy and the aunt staying with her is not all that patient.

Our nurses on the floor have been phenomenal. We really have been blessed. They listened when I was concerned, hugged me when I cried, and handled Will with humor and graciousness. William's blood pressure can be challenging to maintain. With the large influx of fluids, it should have been totally stable, but yesterday afternoon, we saw a drop beginning. The nurse called the resident who said she wasn't worried about the numbers. I, however, saw that Will was fading and said, "Um, yeah. Not a good answer. He needs an influx of fluids despite the vast quantities he has received." The nurse quickly called the doctor back who ordered half a liter of normal saline and within the hour, Will was cracking jokes and was ridiculously giddy. Yeah, this is the kid we know and love. So, why he needed a bolus of fluid after receiving so much fluid is really beyond my understanding. It will be good to chat with Dr. Teasley this morning.

On a side note, Dr. T is ordering a new sleep study. She has an associate who read an article regarding sleep apnea and its correlation to POTS and immediately thought of William. So they are trying to get a new sleep study ordered for Will before we head to Ohio. She simply has never agreed with the diagnosis Will received from the sleep study we had performed. Due to the brain compression, he should have central sleep apnea. In other words, his brain is not telling his muscles and lungs to breathe when he sleeps. However, he was diagnosed with obstructive sleep apnea. So she wants Will to see her associate for an evaluation that she trusts.

We hopefully will be discharged today. We should know in a couple of hours. Hopefully yesterday's blip will not delay our return home...

Monday, October 25, 2010

This was not what I had planned for my day!

Will is enjoying the hospitality of the PACU at MCV. We saw Dr. Aaronson this morning, had lots of lab work run, then talked to Dr. Teasley. She concluded that Will needed to be admitted so they could hydrate him and give IV Levocarnitine.

We are in the PACU which is their progressive unit, or the unit that is below the ICU in terms of level of care. It is a big room with multiple curtained "rooms" which aren't rooms at all. So, it is a bit noisy in that you hear everything with all of the other patients and their televisions, monitors, and conversations. So restful it isn't. However, the nurse's station is literally five steps away so should we have a crisis, help is right there.

I am exhausted. Will is tired, so we are ready for sleep. We will be awakened probably every two hours for lab work, additional fluids, medication, or vital signs. It is gonna be a long night.

As we try to resolve the metabolic crisis, we are looking forward toward Cincinnati next week. We hope to fly out next Tuesday, the 2nd. However, if we cannot resolve this quickly, the surgery will be postponed. It took three months to obtain a date this time, so another three months is just not helpful...the progression just continues...

Saturday, October 23, 2010

I love modern technology...at least most of the time. I am sitting in the van (NOT driving!!!) logged on to the internet thanks to my new phone and Verizon's graciousness of providing two free months of using my phone as a mobile hotspot. This is very sweet. :)

We are on our way to Scottsville, albeit much later than planned, to help Chelsea and Roman move. We have had the girls since last Saturday and they are totally exhausted. Chloe likes to awaken before dawn at my house, so she and Emily are currently sleeping really well in their car seats. Will is traveling with an IV since he is just not feeling well. We have packed an extra bag of fluids for him, but hopefully we won't need them.

We are supposed to head back to Ohio in a little over a week. This past week was spent seeing Dr. T to discuss Will's current condition and to make plans for the coming two months. We would really like to avoid another metabolic crisis like the one that caused our tour of hospitals. I once again asked her if we had to go through with this surgery. Her response was so disheartening. His upper extremity reflexes were gone several months ago, and now the lower extremity reflexes have deteriorated. We have no choice but to continue forward and pray for the best. Ugh. I truly hate that answer. We have no choice but to move forward but we have no guarantees. We have hope, but no guarantee. I know that this is where faith comes in...to trust that the Lord is in total control of this and we have but to follow the path that He has established, but the mom in me is just screaming on the inside.

We also met with a new cardiologist. This particular cardiologist was the one who evaluated Caroline's heart murmur and actually had a grasp of mito, POTS, and Ehlers-Danlos. (My favorite statement is that he could use mitochondrial disease properly in a sentence.) :) He cleared Will for surgery and is also going to send a letter to the neurosurgeon to recommend that William remain on hydration therapy (an IV) the entire time he is inpatient.

This week we see Dr. Aaronson for Will's pediatric pre-op appointment and finalize preparations for Ohio. We have requested an Angel Flight for Nov 2, need to discuss nutrition issues with CCHMC for Will postop (a wired jaw and food allergies are gonna make this interesting...), and still need to make arrangements for the older boys for while Billy and I are both in Ohio. There are a bazillion other details like organizing Will's schoolwork, ordering IV fluids for the week we are in Ohio before surgery, organizing our lodging until we can get into the Ronald McDonald House (takes about five days on the waiting list to get a room), and determining whether I can afford a new blender. Researching how to give Will decent (healthy and tasty) food while his jaw is wired shut is going to be a bit time consuming. If anyone has great soup recipes that don't look absolutely disgusting when blended;, don't contain milk, corn, or soy; and don't take all day to create, please send them my way! If you have a soup recipe that tastes like a hamburger, then that would be totally ideal. :)

Will does know about this upcoming surgery. He handled the information amazingly well...I pray he isn't internalizing it all. All he said was, "It is only for six weeks, right?" regarding the jaw being wired shut. Lord willing. We did laugh and chat about how he could practice his ventriloquism technique while he is wired. Is this a case of "we either laugh or we cry?" I'm not sure.

Tbis past week was 740 miles long (not counting the drive to Chelsea's today). We normally hike in the Shenandoah Park on Halloween, then have a campfire. This year that is looking so uncertain. Will cannot hike six miles, so we are going to have to find a new tradition...This coming week is a bit crazy in preparing to leave again, but hopefully it won't be nearly so crazy as this past week. Will is not feeling well, so I am praying that he isn't going to become really sick. That would require a postponement of the surgery. It took three months to get this date...

Tuesday, October 12, 2010

Showers of Blessings

The last few updates have been a bit..bleak which is not intentional. But after ten at night, I tend to feel overwhelmed with all that is facing us, and that is when I generally have time to update, so that is what you here.

So, for tonight, here are some of the positive things you may not have heard...

The visit with the orthopedic today went well. The bones are fusing; progress is being made. When we return for surgery in early November, they may choose to allow Will to sleep without the brace and wear it only for activity. So we have hope that it may get easier.

Will and I did catch the stomach virus working its way through the family, but Will avoided the ER. It was close...I had my shoes on and was packing the bag when he begged me to not go. His bp was holding, but not his heart rate, so I gave him 30 minutes. He held his own, so I let him sleep and today he awakened vastly improved. Not spending the night in the ER is a huge blessing.

The hotel we are in is perfectly located for the situation in which we found ourselves. It is north of the city (the hospital is about half an hour away), but any shop or restaurant (including Jersey Mike's, one of Will's favorites!) is literally around the corner. We have a kitchen, so we were able to survive being ill and we didn't have to get in the car to find food. One quick trip through Walmart was all that we needed. We saved money AND survived the stomach virus. :)

Someone recently asked how finances were, especially since the kids were in school. Sometimes it is easy for me to focus on that bottom line and have no idea how we are going to do all of this. But, at the same time, I recognize that by all rights, we should be in foreclosure. The amount of money that has been required to handle all of the travel, the school expenses, and the medical bills is such that we should have already lost our house. But we have not missed a payment. We may pay it on the last possible day without it being late, but we have not been late with a payment. The Lord has totally provided everything we have needed each step of the way. This trip, I had no clue how we were going to do this. But the hotel points we have earned totally paid for the hotel (the hotel that has a kitchen!), and a church here in Ohio actually helped cover the rest of the expenses.

Let's not forget Angel Flight. We have not had to make the drive to Ohio since the infamous trip in May when we toured the hospitals between Cincinnati and home. Angel Flight has been a HUGE blessing. I truly have no idea how we would have managed this if we had had to drive Will each time.

We have friends here in Ohio who are determined to let us know that we are not alone. Every time we are in Cincinnati, we are invited for lunch, dinner, or even a cup of coffee and reminded that, while we may be far from home, we have a home away from home. We never feel alone. To feel so welcome in a distant city and to know that you can call someone if you have a crisis is a gift beyond measure.

Guest services at CCHMC is amazing. We walked in today and Kim came from around her desk and gave us a hug because she remembers us. We asked for information on the Freedom Museum, and she gave us tickets. I expected them to be discount tickets, but alas, no. We can visit this museum for no cost. I have had William read Uncle Tom's Cabin just so we could visit this museum and he would grasp the importance of it. But to visit it for free when our budget is so tight is a HUGE gift. And to be welcomed back to the hospital, while it may seem odd, is also a huge gift.

So yes, I do occasionally want to stomp my foot and yell, "Seriously?!", but I recognize that we are indeed blessed beyond meausre. Yeah, I sometimes want to ask to be let off of this hurtling train, but at the same time, it is amazing to stand by and watch the Lord work out all of the details that seem insurmountable to me.

So thanks for bearing with my bleakness, and thanks for sharing in the joy we have had in this journey.

Monday, October 11, 2010


How do I even explain the last few days? The grandkids spent the weekend with us which meant a late Friday night drive to Richmond to get them. We celebrated Chris's 16th birthday on Sunday. The washing machine had been down, so I was also trying to catch up on laundry so I could pack. Caroline came down with a stomach virus as Chris's party was starting. Cam followed later that evening. Billy isolated them and himself in an effort to protect everyone else. We discussed whether we should cancel the Ohio trip, but seeing the allergist before the surgery was the best choice, so we moved forward.

We decided that moving forward with the appointments was the best choice, so today, Will and I flew to Cincinnati. But as we arrived, I realized I had the virus. Tonight, William is ill. We are safely ensconsed in a hotel room with a kitchen, soup, crackers, ginger, ginger ale, and water. Will is so far holding his own. I am in a holding pattern, trying to determine if I need to start an IV now to prevent him from becoming hypotensive or do I wait and see how he does? Oh, this is so not fun.

All of that being said, we are so far coping. We are north of the city this time, staying at a hotel using points earned at another hotel. :) We are really convenient to a SuperTarget and Costco which is incredibly helpful given the current situation. Having a kitchen makes this so much easier. Progresso soup, a microwave, crackers, bananas, and popsicles means we can simply rest and try to recover instead of having to find food that would be safe to eat tonight. Lord willing, we will feel better tomorrow in time for the doctor's appointment.

Despite the incredible difficulty involved in getting here (again!),we have been so blessed. We were blessed with sufficient funds to cover the trip, angel flights, a hotel with a kitchen that has a grocery store literally around the corner, a rental car that doesn't make me cough, friends at home who pray for us and help us through the daily travails of our current situation, and friends here in Cincinnati who are willing to befriend people they don't know and walk a difficult path with them.

So while I occasionally want to stomp my foot and scream, "Seriously???" I am reminded that while we are indeed placed on this incredibly difficult path, we trust that Christ does indeed walk this with us and, even, carries us and all of this.

Saturday, October 2, 2010

Just the facts, ma'am

I keep thinking that I will have the time and emotional strength (at the same time) to get a decent update out, but that just hasn't happened. So here is the basic information so you guys know and can pray.

Will and I fly to Cincinnati October 11 for five days. We see the orthopedic on the 12th and the allergist on the 13th. We are doing a preliminary exam with the allergist just to rule out the whole EE issue. At least we hope to rule it out.

We will return home for two weeks, then Will and I will return Nov 2 for the Nov 3rd appointments wtih the orthodontist and plastic surgeon regarding the surgery on the ninth. We will remain in Ohio until the surgery. Travel is a challenge for William, and two trips in the same week may be too much for him. We really would hate to postpone the surgery due to a metabolic crisis, so we will just have to stay there.

Obviously with this much travel and the school tuition, finances are snug. Am I concerned? Yes. Do I trust that this is going to work out miraculously? Yes. It has happened before and I know that God is bigger than my budget. Am I worried about how William will handle the information regarding the surgery? Yes. I absolutely dread talking with him about it.

So, as I head to bed with a very heavy heart, I am grateful for the knowledge that God loves Will more than I do and He started us on this path and has promised to be with us...Prayers deeply appreciated.

Monday, September 27, 2010

We Have a Date

I was at church yesterday when a friend gave me a hug and said, "It's been pretty quiet for a while. I guess that means that things have been challenging?" and I was surprised. She really did understand. And I was grateful that she understood.

So, yes, life has been challenging and if I write about it, I have to actually deal with it, and I have really preferred the "There is an elephant in the room and we are so not gonna talk about it" approach. But, eventually the elephant gets tired of being in the room. So here goes.

We have a surgery date. November 9, 2010. I handled that information fairly well. It was the call that came a few days later that had me spinning. When we were initially informed that Will required this particular surgery last December, my world was totally rocked. It is an ugly procedure. But when we were in Ohio last month, we were informed that because Will had grown, they most likely were not going to have to split his mandible and tongue and perform a tracheostomy. That apparently was incorrect. A few days after receiving the surgical date, I received a call from the plastic surgeon's office with a preop appointment. So they are going to split his mandible. Okay. So they are going to have to wire his mouth shut afterward. Not what I wanted to hear.

So now the questions are flowing because I now have to face this. William takes twelve drugs a day, three of them multiple times, and one is a time release. If we have to crush his meds to give them to him through a straw, then how are we actually going to make that many palatable and what do we do about the timed release? And if he is still in a neck brace, isn't that going to be insanely painful for the jaw? Will the pressure of the brace impair the healing of the jaw? There are at the moment no answers, but I am definitely posing those questions to the appropriate offices.

This information is still unknown to William, so I would appreciate prayer but no discussion with him until we provide him with details. We are not wishing to overwhelm him with the information until we get a little closer to the date...

Sunday, August 22, 2010

Anyone Have a 2 x 4?

Will and I attended Faith Presbyterian this morning. When you are in a distant city, you don't often feel at home. But walking into Faith Pres is like walking into home. I felt like I met half the church this morning, and it was the half I didn't meet last time! When Beth walked up and introduced herself and said, "I read your blog." it was a bit surreal. Really. I have never before met you. But even though they don't know us, they are a determined bunch...determined to care for and support us and love us as best they can while we are here. And we are apparently going to be here a lot!

Friday I wrote an update about Will's doctor appointment and the fact that we are apparently going to be on the frequent Angel Flight plan for Cincinnati. I was totally overwhelmed with how in the world are we going to do this. You know, I have not panicked over much of this. You just do what comes next and keep going. You trust that God has a plan. Occasionally, though, the numbers get a bit overwhelming and you have no clue how to move forward. That happened Friday. Will was upset. I was overwhelmed.

Then the most interesting things happened. :) We met a mom who was here with her 2 yo who was being evaluated in the EE clinic. They were brand new here and had no contact with anyone else with a chronically ill child. They joined us for dinner in the bar (where I had hoped to watch the football game) and we chatted for ages. Her mother-in-law reminded me of Billy's mom. She introduced herself, but ensured me that I knew that she loved Emily as her own. What a huge blessing! She had flown in from Key Largo to help.

Then this morning, we headed to church. That is a blog posting all its own, but the short version is that I have never been a second time visitor in a church and felt so incredibly welcome and at home...and cared for. It made leaving so difficult. Will wasn't feeling well, so he is non-communicative. (You ALWAYS know when Will isn't feeling well! If he is quiet, it is never good!).

So we got back to the hotel where we scavenged in the fridge for lunch, got Will's IV started, then I went for a run. I felt so much better. Becky Riggs asked if we would like to visit them for dinner...yay! Friends!

Despite the fact that Subways are apparently closed on Sundays here in Cincinnati (apparently I missed that memo!), we finally found an open one, picked up a sub (meaning safe food) for Will, and headed to their house. Will was very comfortable hanging out with Scooter, their dog, and Becky and Keith just made us so welcome. (But I owe Becky a vacuuming job since Will rubbed the fur off the poor dog!)

Back to the point...Friday evening I was totally overwhelmed. Then we met a mom who needed to not feel alone. Then Saturday, we met Becky and Brian(which made me feel much less alone) and received a text from Becky R that stated help was available. (Are ya listening yet? You aren't alone!) We attend church where we are surrounded by people who just take us in and love us for where we are and promise to help when we return next. I went from being totally overwhelmed by "How are we going to manage this?" to being very clearly shown that we are not forsaken but very dearly loved.

We may be far from home and enduring countless struggles, but we are so very blessed. The Lord definitely used the last two days to remind me that while we may be here without our family and in an impossible financial situation, He is right here with us, meeting our physical, emotional, and spiritual needs...and doing so abundantly. Why do I allow myself to be overwhelmed and fearful? I mean, really, if you read far enough back in this blog, you see His constant provision...I am apparently a very slow learner. :)

Friday, August 20, 2010

Oh What a Day...

There are days...and then there are days. You wake up in the morning all chipper and singing...and then it starts. Today wasn't really all that bad, but it wasn't all that great either.

William is not handling this travel well at all. He just feels rotten all the time and it seems beyond my ability to know how to manage it.

We went to the doctor this afternoon and basically blew the PA out of the water with Will's medical history. I think he was truly relieved when Dr. Crawford walked in. :) Dr. Crawford, as always, was such a gentleman. He had a visiting physician from the Netherlands with him, so he asked Will what language is spoken in the Netherlands. When Will correctly answered "Dutch", Dr. Crawford laughed and was so surprised that Will got it right. It was fun to watch. Then began the painful conversation that yes, things are progressing, but no, this brace is not coming off. When actually asked specifically, we were finally told it would likely be 9-12 months total, so it may be anywhere from December or April before it comes off. William had a hard time handling that tidbit of information. It would have been so helpful if Will could have been prepared for that information prior to this point, but no one would ever provide it when asked. It is the first time that question has been answered concretely.

Which means...that we will be traveling here every five weeks for months to come. Which means...I have no idea how we can continue doing this. We truly cannot afford it, and Will cannot constantly react to the travel or food or whatever this is.

Chatting with Erica, the nurse, we talked about the struggles Will is having with food, and she recommended an allergist. Our allergist is not at all well informed regarding autonomic dysfunction, so I asked Erica for a recommendation. Hopefully we will obtain an appointment that can coincide with our other visits here...getting answers would be really helpful. She is concerned that Will has progressed to EE (eosynophilic esophogitis) but we aren't headed going there just yet.

So begins the research to determine what our options are. If we could leave a car here, then it would mean no car rental cost. If we had an apartment, then we could cook our own food. But apartments are not cheap. There have to be answers...but right now all I have are questions.

Tonight is the Bengals' (a pro football team!) pre-season game, so Will and I are gonna watch it in our room while I peruse classified ads and check options...and maybe even knit. No really. Knit. The thing I seldom have time for but remember enjoying. :) Hopefully it will be a quiet evening with a reasonable bedtime that will produce true rest...

Thursday, August 19, 2010


We are once again in the fair city of Cincinnati. Matt, our favorite Angel Flight pilot, flew the first leg, then Brad met us in West Virginia for the second leg of the trip. He was so pleasant and had a great sense of humor. We landed in Cincinnati and grabbed a late lunch at the restaurant, then headed to Target for Will's daily intake of Gatorade. Midway through Target, it was very apparent we needed to get to the hotel soon. He was fading quickly and needed fluids. So we head directly to the hotel where we discover that they only have king sized beds available tonight. You are so kidding me, right? This kid wakes up sideways in the bed and I have to share a bed with him? It is gonna be a long night...

William is now hooked up to an IV. He is looking better but it appears that our curiousity over his crashes occuring after eating is again substantiated. He does this but mostly when we travel. So, we are fairly certain that there is something prevalent in the restaurant food to which he is allergic. Finding out what that is is going to be a challenge. Avoiding it while traveling is an even bigger challenge. I have a feeling the road to Whole Foods is gonna be a familiar site to us. Finding a place where we can prepare our own food may become essential, but how that is gonna work is totally a mystery at the moment.

We see the orthopedic tomorrow. I seriously doubt that William will be allowed out of this brace, but he is ever hopeful. We may need to run another bag of fluid tomorrow before we leave, so I am glad that our appointment isn't until after 3.

On a lighter note, as I was frantically running around the hotel getting rooms moved due to the lack of a refrigerator (which we need for the IV fluids), Will waited in the first room because he just was not up to walking around. There is security all over the place...not armed security, just lots of employees ensuring that everyone is doing what they should. I ask what is going on, and aha! The Bengals are staying at my hotel. Oh, really. That explains the incredibly enormous fellows in the elevator with me. I do mean enormous. Not enormous as in wide, just enormous as in tall and a force with which to be reckoned. I was ever so grateful they were friendly 'cause I was feeling a bit minute next to them...and the only female in the elevator. Oh, dear. They simply smiled and said, "Hello." Although, I now know why the hotel has a great gym! :)

Saturday, July 24, 2010


Just for the record..I updated the blog Thursday night (ok. Really, it was Friday morning since it was after midnight...) and then Friday morning wrote an apology...

The apology I was written purely out of guilt on my part. No one was offended or offensive. I was the only one telling me to "Suck it up, Buttercup." It was truly one of those moments when you think, "I really shouldn't have said this but now it's in everyone's inbox and now what do I do?"

Thursday night, I had just finished manipulating numbers, trying to find some way to afford a school that I truly believe would be ideal for my younger children next year, when I wrote the update. I had been told that the school would be willing to provide some scholarship assistance, but I still had to find funds to pay the balance of tuition. And it just is impossible. There is no way to help Will medically and pay tuition. I was exhausted both physically and emotionally. I can't help any of my kids at this point. It's totally in the Lord's hands because there is no way mine can make any of this work. But I was so sad. I so want my kids to have stability and a decent education provided by people who truly love the Lord and care for my kids.

So I wrote the update.

Friday morning, I thought, "Oh, I cannot believe I did that." Why do I just put everything out there for the world to see? They don't want to know that we can't afford tuition and still pay our medical bills and travel expenses to Ohio and the mortgage. They don't want to nor need to know the minute details of our life or of my grief over our current situation. Really. Put on that Sunday face and "Suck it up, Buttercup!" So I wrote the "I am so sorry for being way too blunt" post.

And then I received emails. People are truly concerned that I was being criticized for the post or that I was irritated by suggestions I received in an attempt to help me find a solution. None of that is true. It truly was my own sense of guilt at having burdened anyone with my current level of pain...Truly.

So do I apologize for the apology post? :) Or do I simply say, "Thank you for caring enough to pray and for wanting to help find solutions to the impossible dilemna." I think I'll stick with the thank you and quit apologizing for breathing...at least for the moment. :)