A Good Doctor is Worth Her Weight in Gold

I know I sing Dr. T's praises regularly, but really? What doctor calls you on a Saturday night at 8:00 to discuss your son with you before she leaves on vacation? And mentions that she is contacting a doctor in Seattle regarding William because she hopes he has some insight. This woman lives her job, which actually makes me worry about her, but at the same time, I'm so incredibly grateful for her. She is constantly advocating on Will's behalf and looking for solutions to make his life more...manageable and enjoyable. And the phone call? It isn't a 20 second information dump, it's a fifteen minute discussion about how he is, where his baseline currently is, and then discusses what we can change to make things better. I really do not know what we would have done these last three years without her.

On the trip home, Thursday night, we were driving in the dark in the mountains, and I asked William how he was doing emotionally with all of the "stuff" he's had to contend with. Interestingly, he said, "Fine." Um, really? He had just gotten the big ol' brace off and was a bit giddy over the smaller one, so I kinda understood his reaction, but when a doctor walks in and tells you bluntly that you are the second sickest kid in her practice, then that has to have an impact on you. The fact that he is unfazed by it has me a bit...concerned. Is he really ok with it or is he just internalizing it all and ignoring it? You don't get approved for a Make-A-Wish Foundation trip unless you have a life-threatening illness. But Will seriously seems to be coping incredibly well.

So, do I worry that Dr. T has no life outside of her patients (ok. She is spending the week roaming the Keys this coming week, so she has some kind of relief!) and Will is unfazed by the fact that he is kinda sick? I think, at the moment, I'm gonna stick my head in the sand, pray for both of them, and run...a lot. :)

Where Everyone Knows Your Name

This afternoon I had the choice...do I take the turnpike, which adds an hour to the trip but avoids the mountains and back roads, or do I take the same route I took on the way up which of course is mountains and back roads in the dark. At the last minute, I opted for the faster route. My mistake. It was getting later into the evening, I was tired, and that is not a great combination for curvy secondary roads that I have only driven twice. So we stopped in Cumberland.

We stayed at this Fairfield Inn in May on our return trip from Will's surgery. When I walked in tonight, it was the same desk clerk and she totally remembered me. I was so surprised. She helped me locate food for a late dinner (in a town that closes its doors at 9 pm) and was just...welcoming. Being recognized for some reason makes you feel...at home...not as much of an interloper. Being where everyone knows your name is comforting. Surprising, but comforting.

As for Will...he has traveled on an IV and seems to be tolerating the trip. What he isn't tolerating is the little brace. He never complained about the big one, wore it all the time, and really was amazingly compliant with it. But now that he has the little one??? Man. I keep finding it off of him. It is like he has senioritis. The end is in sight so he's not interested in doing what he still has to do. The next two months may get interesting with him.

Time to crash so I can finish the drive tomorrow, find food to take for Ben's parent night, and actually attend parent night.

Yesterday morning, we left Zanesville, Ohio and drove just under three hours to Cincinnati...in yet more snow. The roads were totally clear, but the visibility was a bit of an issue, especially when the windshield wiper that made this constant squeaky noise decided to no longer clean the windshield...and then I ran out of windshield washer fluid. Let's see. Driving 75 mph down the interestate with lots of trucks and other cars and not being able to see out of the windshield doesn't strike me as the wisest of choices. So, we gave great thanks for a gps that could locate an Advance Auto Parts just three miles off the interestate who actually had the windshield wipers in stock and whose employee very graciously put them on the Buick for me. A clean winshield with no squeak...it's the little things in life that we should appreciate!

We arrived at the hospital a few minutes early. Not that it mattered. After we checked in, they kinda misplaced his chart. An hour and a half later, I asked how much longer. Tanya, the receptionist, profusely apologized and went to locate his chart. Voile'. Moments later, he was called to radiology for his umpteenth cervical xray. We were told we would be put in the next available room, but someone did not get that memo. Finally, 2 1/2 hours after our appointment time, we actually laid eyes on Dr. Crawford.

Dr. Crawford is a tall, well-spoken, clarinet-playing older gentleman. He always smiles and yesterday, profusely apologized for our getting lost in the system. We could have gotten totally bent out of shape over it, but really, what is the point. It was an honest mistake. We were here for the sole purpose of seeing Dr. Crawford, which we did.

Yesterday at breakfast I had asked Will how he was feeling about this appointment. He basically stated he wanted out of the brace but didn't expect for that to happen. After the last MRI and xray, we were led to believe that the fusion between the base of the skull and C1 were not happening. Two months later, Dr. Crawford is totally pleased with the progress and tells Will he can have a smaller brace. At first it didn't register, but then reality dawned. Yep. He now has a small squishy little brace that basically is there to remind him that his neck muscles are way too weak and he needs to strengthen them with certain exercises. We return in April for a CT scan and hopefully, maybe, he will be able to come out of the brace altogether. But there are no promises on that. Needless to say, Will came out with a huge grin and asked if he could burn the big brace. :)

We are staying with Becky and Keith in their amazing basement apartment. Even as I type this, I am sitting in front of a fireplace and contemplating how amazingly the Lord has cared for us over the last year. When we were in Cleveland in December 2009 and received the news of what was ahead for us, our world was totally rocked. Even then, we had no idea how incredibly difficult all of this was going to be. But what is even more incredible is how the body of Christ has supported us in every way.

So today, we are quite happily hanging out with an IV and getting ready for the return drive. I will let Will sleep tomorrow as long as possible, and we will likely start driving somewhere around noon. We'll stop somewhere tomorrow night if we get too tired, and that puts us home sometime Friday afternoon.

The Scoop on Miss Molly

We are safely ensconced in a hotel in Ohio about 2.5 hours from Cincinnati. It is dark, snowing heavily, and I am tired. So it was in our best interest to stop tonight and continue driving tomorrow late morning. Our appointment is scheduled for 245, so we have plenty of time.

As for Caroline...we saw Dr. Graham last week to discuss the results of her tests. Basically, her abdominal pain and other symptoms are from the same issue as William's. The food sits in her stomach rather than going into the intestines, so her stomach churns out acid the whole time. The intestines don't move things along, so that creates more pain and increases the risk of an obstruction. She is now on three different meds to manage the pain and lesson the symptoms. They won't cure or solve the problem, but the medications will alleviate her discomfort and hopefully help the GI tract to function more normally which in turn will help her to grow and develop.

So the burning question is, "What does this mean?" and the answer is, "I don't know." Is this the same diagnosis/issue that Will has? Yes. Does that mean she has mito? This is where the water gets murky. William's Chiari three years ago and the resulting brain stem compression have contributed to his physical issues. Which came first, the chicken or the egg? The fact that her joints are so unstable means she has the same Ehlers-Danlos as Will. The likelihood that she has mito is very strong. But until Dr. T sees her and makes a decision, we are still in a holding pattern...If she does, then starting her on the cocktail would be important. But it takes time to get through all of the little checkboxes that we have to conquer. So while the waiting time is challenging, we have at least one more piece to the puzzle.

Back to William...We are scheduled to see the orthopedic tomorrow. William still has his impressive neck brace on because the fusion was still incomplete. We have not had an xray on the cervical spine for two months, so anything could have happened. Best case scenario is that the fusion is complete and the brace can be removed. The worst care scenario is that the fusion is not happening and we are having to physically do something to make it fuse which translates to yet another surgery and the possibility of a halo.

So, tomorrow morning, we will head toward Cincinnati and will revisit the esteemed Dr. Crawford.

Detour Ahead

When Will was in the hospital a couple of weeks ago, we had to reschedule lots of appointments, including a Cincinnati appointment. That appointment is now scheduled for Tuesday. We did have an Angel Flight scheduled for Monday, but Cincinnati is anticipating snow throughout the day, so that was canceled this afternoon. So, we have yet another change, and now I'm driving.

I made so few plans for this trip. Last time I drove, it became this insanely long trip...on the drive up, there were two different car fires, a total interstate closure, and miles of road work. I actually cried the last half hour of the drive 'cause I was so tired. Well...the return trip was the "how many hospitals are there between Cincinnati and home." Not the fondest memories, so there is a boatload of apprehension associated with this trip.

Will has had an IV today which brings him to a total of 5.5 liters this week. Not a horrid week, but not great either. He will travel on an IV tomorrow, which makes me akin to the wicked witch of the west. He hates going out in public with his IV, but to not do so would invite disaster. So, he can just deal with it. :)

While I am very much not looking forward to this drive, I am looking forward to seeing friends I have not seen for two months. Talking to Becky tonight, she laughed and said that to her, I was away from home for the last two months. I do feel like I bounce between two homes/worlds. I miss my family when in Cincinnati, but how blessed I am to have that second home and the family to go with it. So many people in my position don't have that blessing. I can't imagine this last year without it.

So, tomorrow we drive and pray that we don't encounter any car-b-ques or road closures or detours. But if we do, we'll relax, enjoy some tunes, and patiently cope with whatever God has planned for us. It would just be nice not to have one of those big blue H signs in that plan.

When we finally arrive in Cincinnati, I'll fill you in on the current news of Caroline...Until then, I'm gonna crash so I can actually safely drive tomorrow...which is actually just later today since it's already after midnight. :)

Here We Go Round the Mulberry Bush

We were supposed to be discharged today. Then we weren't. Maybe tomorrow?

This afternoon, William just started slipping...he was tired, not cracking jokes or haranguing the nurses, and laying down. Not good signs for him in the early afternoon. So began this huge discussion with the nurses. What to do. We hooked him back up to the fluids, but that was not gonna be enough. Finally, it hit me. If he is in an energy crisis, then he needs dextrose. Increase the rate of his fluids.

So, we doubled the rate and we watched him return to life. It is amazing how it worked, but it is also points out how fragile he still is. Not the greatest news in the world.

So now we wait. Was the extra dextrose enough of a nudge for his system to actually start working properly again? Well, time will tell. He ate tonight, which is great news, he is sitting up and chatting, which is a good sign. Will it last? Tune in tomorrow for another episode of, "As Will's World Turns."

We've Been Here Before

I have contemplated many posts, but I have not actually sat down to type them out. Sitting at my desk at home to do more than pay bills and set up the next Cincinnati trip has just not been the priority. I miss the blog, but the kids really needed to see Mom. I am actually sitting here in the dark typing this post 'cause Will was admitted to MCV last night.

Will caught a cold about four days ago and required more than the typical number of infusions. Unfortunately, he contracted a stomach virus yesterday. He was mostly coping with the cold, but the stomach virus put him over the edge. By the time I got home, started an IV, packed a bag (cause there was little doubt he would be admitted), and got him to MCV, he basically was curled up in the fetal position. Dr. T had paved the way for us, so within minutes of arriving we were in a bed. It took a while to get the IV L-Carnitine started, but once it was on board, the improvement was astounding. While he is far from himself, he is vastly improved. We were admitted to the Progressive Care Unit (actually, the same room we were in two previous times!) which is a step down unit for the ICU.

It's an interesting emotion when you walk into a hospital and are greeted with, "Hey! We haven't seen you in a while!" and then your nurse walks in and says, "How are you? How was the surgery?" or another nurse from the adult side sees your name on the board and walks over to say hello. When they are getting ready to transfer you to the floor, the new nurse tells the ER nurse, "Let them know they are going to the same room as last time." Last time was two months ago, but she remembered. The Billy Joel song about wanting to be where everyone knows your name takes on a whole new perspective.

While being here is far from where I would like to be, it is comforting to know that I don't have to go through the whole teaching curve all over again. They know Will, they know what to look for, and they genuinely seem to care. It is tough to have a nurse say, "I went home to research what is wrong with your son so I could better care for him cause I knew he would be back," but the fact that they are willing to donate their personal time to better care for your child gives you a sense of comfort you don't otherwise have.

So here I sit, in the dark, watching Will finally sleep. They did not have his night meds, so he didn't fall asleep til after 4 am. How he is able to sleep at all in this place is always a mystery to me, because there are a lot of us in a big room with no walls and it is always noisy.

We are supposed to fly to Cincinnati on Sunday for an appointment, then trek to Toledo (about five hours from Cinci) for another doctor appointments. I have no idea if I should cancel that trip, so I am waiting for the doctors to make rounds. I have no idea how long we will be here...