Monday, February 21, 2011

Home..My Favorite 4 Letter Word!

We were discharged today and arrived home just in time to get out of the Buick and into the van to take Cam to basketball practice. I could definitely sleep for about two straight days, but it is now 10:00, the laundry is in process, and I have to be up by 6 to get Cam to a dentist appointment. Nope. Nothing here has changed. But familiar is kinda pleasant...even if it is a bit crazy.

As we were preparing to leave the hospital, it was truly an odd feeling. These people have become our friends, but we only see them under less-than-pleasant circumstances. There is a mom in particular who walks the hallways constantly with her little guy. Last month, we chatted briefly about the challenge of locating food in the hospital, especially on a Sunday evening. Everything but Subway closes at 2, so it is either a vending machine, Subway with an hour long line, order something to be delivered, or fast until Monday morning.

Today, as I was packing our stuff, I was in the family room. My sister, a personal chef, had created individual meals...amazingly yummy individual meals, for me. They were a huge blessing. I didn't have to leave the floor, they were healthy, and they were tasty. All I had to do was choose one and warm it in the microwave. Stouffers could learn a few things from Beth. Anyway, I had one breakfast and one entree remaining.

As Tabitha, who was there again with her little guy, and I were chatting, I realized that she was going to remain there for quite a while this time. I offered her the two remaining meals, and she was thrilled. What was the best part of all, was being able to share how the body of Christ has supported us and loved us and cried with us.

As we left the hospital, everyone said, "See you later!" We all know there will be a next time. But for now, we are home and safely tucked in our beds and ready for a much needed sleep.

Sunday, February 20, 2011

Thank You

This blog is truly a meandering of my thought processes. Will occupies 99% of those musings, but it really is me sitting at my computer, planning to write about something, and something else actually comes out of my fingertips. :)

My daily life is insanely busy. I feel like the only time I sit down when at home is to pay bills or quickly do something on the computer. In the hospital, though, that comes to a screeching halt, and I spend lots of time just sitting. (Which is why I blog more when I'm in the hospital...I am actually sitting!) But it also means I have time to think. And when Will is involved, thinking about his medical issues generally means that a fair amount of grief bubbles to the surface. When you are busy, you don't think. You just do. When you are sitting still, you have the chance to feel.

So, yesterday's blog about games and Will and loneliness was truly just an outpouring of grief. I didn't expect solutions. But, what I received in response was an outpouring of love for my son, which means yet another bout with tears. Not so sure I wanna thank you for the tears, but I definitely want to thank you for what you all have done.

William was inundated with visitors today and my inbox filled with links to card games and rules, game suggestions, and the gift of games. Someone actually brought cribbage and played with William. Robin, the world's best child life specialist, contributed by not only playing with Will, but sending in a volunteer with whom he played last time, to play with him again. From 2:00 this afternoon til ten tonight, there was literally zero down time in his day. Friends and family ensured that he was not only not lonely, but not bored either.

And the icing on the cake? Erlene baked chocolate chip cookies and brought them to us. But she brought a second plateful of cookies for the nurses because she knew that I would want to thank them for all they have done.

So when people look at me and ask me how I do all that I do, I can point to days like today when friends and family totally rally around us and show us that we are not alone. It is days like today that enable me to see just how much we are loved. This is all so incredibly hard, but we are indeed blessed.

So, thank you...for the kind, gentle reminder that even when we are sitting alone in a hospital room, we have friends and family who love us and are praying for us. There really aren't words to sufficiently convey my gratefulness.

Saturday, February 19, 2011

Can Will Come Out and Play?

We are hanging out in the Progressive Care Unit, awaiting Will's ability to tolerate his bp meds and food and maintain his stability without the lifeline being attached. It's a slow process.

Last time we were here (last month), Robin, a child life specialist, came in and played with Will for an hour. Then she sent a volunteer to play Mancala. Watching them play, it hit me that Will doesn't often have the opportunity to play with someone other than me, and what really struck me was that he is really isolated. While he is a typical 14 year old in many ways, he is anything but normal in that he can't play sports, and if we plan to do something fun, it frequently gets canceled or postponed because he doesn't feel well. He has been in the hospital at least five days every month but one since October.

I really don't know how to fix this isolation or know how to try to plug him into something that gives him friendship/contact with his friends, but he needs that as much as I do. He's a social kid. He is also burned out on cards, is tired of losing at bananagrams, and is getting weary of mancala. So now what cool game do I find that will get him thinking in a fun way but is smaller than a bread box and will fit in his backpack with everything else?

So, Robin, our favorite child life specialist, is gonna be back to play with Will in a little while. And I am so grateful that she is here. They have a mutual admiration club and she comes up with cool, creative games to play. More importantly, she gets him out of his little, "I am really tired of being here and wanna go home" funk. That is currently the best part of all.

Friday, February 18, 2011


I feel like we have been here before ...probably because we have been here before. 

This evening I arrived home to Will totally crashed on the sofa with....another stomach virus.  So once again he and I are hanging out in MCV's new pediatric ER awaiting the news of where they will put us 'cause you know we are going to be admitted. 

Andrew started this with a fairly mild version, but Will doesn't catch the mild version of anything.  His blood pressure has already dropped once, so we have a bolus running.  The neurologist on call is a bit clueless regarding Mito, but the ER attending has a boatload of clues so he is totally bridging the gap.  I am so grateful for him, esp since Dr. T is out of town.

We will once again be admitted to the Progressive Care Unit where they can monitor him more closely.  We will once again have to suspend one of his Bp meds til his belly can tolerate it so we may be here a while...

Sunday, February 13, 2011

A Good Doctor is Worth Her Weight in Gold

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

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

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

Thursday, February 10, 2011

Where Everyone Knows Your Name

This afternoon I had the 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 home...not as much of an interloper. Being where everyone knows your name is comforting. Surprising, but comforting.

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

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

Wednesday, February 9, 2011

Yesterday morning, we left Zanesville, Ohio and drove just under three hours to 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'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.

Monday, February 7, 2011

The Scoop on Miss Molly

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

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

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

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

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

Sunday, February 6, 2011

Detour Ahead

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

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

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

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

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

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