6 months and then some

I haven’t posted in a while. I have drafted probably 5 posts in my head. They just never seem to make it to the page. This is probably due to a combination of two or three things: I simply haven’t had the time during the day to sit down and type and by the time that the house is quiet enough for me to think, I’m too tired to pull out the laptop and type. I have also been waiting on some news from the transplant team and it hasn’t arrived yet. Mostly, though, I second guess my posts. It’s hard to paint a balanced picture of what our life is like. I don’t want every post to be super cheery, because every day isn’t super cheery. But, the days aren’t mostly dreary,either,  although I feel like I have a tendency to post only on the dreary days. I guess I’m too busy enjoying the highs to post about them.

So. 6 Months Post Transplant. (really 7, but who is counting?) That’s where we are. Matthew has continued to be healthy and not have any complications from the transplant. Because of the clot that he had immediately following his transplant, he has been on Lovenox shots twice a day. At his 6 month follow-up appointment we were supposed to be discussing removing those shots from his day to day. BUT, his appointment was rescheduled a few times due to snow. We were finally able to meet with his doctors a few weeks ago. He quietly sat through a very long ultrasound (almost 60 images were taken). He patiently waited a long time to meet with his doctors. He was super cooperative with their check up and even showed off a little with his growing head control. The ultrasound was reviewed and found that everything is absolutely perfect with his liver. Great! Hooray! So this means that we can stop giving him those shots, right? Not exactly. The process apparently isn’t as easy as they made it sound. Now we need to take a blood panel to make extra, super sure that it is safe to take him off of those shots.

Side note: I hate these shots. They are at 6 am and 6pm. His entire thigh is scar tissue from them, and we are having to push the needs through that tissue. (It isn’t easy) The medicine makes him bruise super easy too. He has bruises on his spine from his car seat, on his waist from us holding him during therapy and, of course, bruises all over his thighs from the needles. And then there is the fact that Lovenox is a blood thinner. It is supposed to prevent clots. And it does. Really well. So well, in fact, that the injection sites often won’t clot and he bleeds through his band-aids and all over his clothes and blankets and sheets. I hate those shots. I want to stop them.

Back to his follow-up appointment. When they said, “Ultrasound looks great, but we want to pull some blood for a blood panel to make extra sure it is safe to remove the lovenox”, I said “Whatever it takes to get rid of that medicine!” This is huge because I do not like the lab at our transplant hospital. They just are not good at getting Matthew’s labs. I have insisted on everything being done at our hospital for the last two years. But I didn’t have an option this time. So we waited Again. Almost 2 hours. And we finally were called back. And of  course it took two of them. And Matthew’s clonus started acting up (more on this later). And it took them two tries to get a few vials of blood. But, we got it done and we headed home to wait for the outcome.

A week passed. Then two. Where are these lab results!? Finally all of the labs come back. Everything looks great, except for one elevation in an antibody. They are going to confer with a doctor.. who is out of town for the week! We are currently waiting for that doctor to come back and are gearing up to fight them, should they want to keep him on this medication.

Matthew is on his fourth nurse since January. We are crossing our fingers that his current nurse sticks around. We are in love with her. She hits his therapy hard, knows how to read him, when to push and when to back off, sticks to a schedule, and has the strength and energy to deal with him all day long. And, as a bonus, we actually get along. She has been with us for 5 days now. In that time, he has gone from sitting unassisted for 5-10 seconds to almost 30 seconds. He is tolerating and working hard on belly time and making some progress with rolling over!

Back to the clonus. (I feel like I’m bouncing all over the place in this post!) His clonus isn’t something that I have ever mentioned before. If you don’t know, Clonus is an involuntary muscle contraction and relaxation, in rapid succession. For Matthew, his clonus is in his feet. Initially, his were extremely mild, just a small tremor in his toes that would last a second or two and go away. I really never paid much attention to it until his OT noticed it. She gave us some exercises to help with it and that was that. But then January came. Matthew had the joy of enduring cutting 5 teeth, in conjunction with the flu and Strep. His clonus also kicked up. The tremors became longer lasting and more painful. At first it was just when he was over tired. Then, it became almost all the time. We weaned him off of a medication (he was long overdue to come off of it and in the past it had caused muscle control problems for him) and noticed a little improvement in the frequency of the clonus episodes. They have never gone away though. In fact, they hit almost every night at bed time. They are TERRIBLE. The tremors start in his toes and travel all the way up to his hip. It is incredibly painful for him. He screams and holds his breath and turns blue and then it passes. But they come at him again. Wave after wave for 2, 3, sometimes 4 hours. We hold him, try to sooth him, feel his body tense in anticipation of the next wave, try to stretch his feet and ward it off, try to help him bend his body and ease the pain.. over and over until he just can’t take it any more and collapses into sleep. Then we pray that the tremors don’t wake him up in the night.

At first, his physiologist thought that the spike in tremors was due to the viruses he was fighting, but that went away and the tremors didn’t. So now we need to visit his neurologist. I honestly don’t want to make this appointment. One: because it is in DC and I have grown to hate that city lately. But mostly because I’m afraid of what she is going to tell us. I know that his clonus is due to his brain injury, so, does this sudden, drastic change mean that something has happened to his brain? I’m nervous that it means a study and a few sleepless nights in the hospital. I don’t want it to mean more medication. Medicines always mean some sort of no fun side effect with Matthew.
A few weekends ago, I went on a much needed weekend away with my closest friends. Before we headed home, one of them mentioned that she feels like she’s always getting “oh thanks” looks when she tells people she’s praying for them about X. So, she wanted us to tell her what we wanted her to pray about. I told her that I appreciated her praying for Matthew, but that it wasn’t Matthew that needed prayer. It was me. Matthew is strong and smart and healthy. I struggle almost daily to be content, to not question God, to not be angry at what Matthew is having to endure every day. I’m thankful for him. I’m astonished by him. But I frequently lose faith that Matthew will ever come near reaching normal abilities.

However, I was wrong. Matthew does need your prayers. I don’t believe that he would be where he is without them. That he has lived 2 years without any major hospital stays is nothing short of miraculous. It is miraculous that he never had any further ammonia spikes after her first few days of life. It is miraculous that he started drinking a bottle without a hitch after 11 months of not putting anything into his mouth. It is miraculous that he has had Strep and the flu without needing to be hospitalized. It is miraculous that just 2 months after starting bottle feeding, he maintained his calorie intake, by mouth, in spite of the pain of teething and having Strep.  I believe that all of these miracles (and many more) happened because you all continue to pray for him. God is working on His plan for Matthew’s life.. although it obviously isn’t aligning with my time line.

So please, please continue to pray for him: for his continued growth, his health, his healing. Please pray that we will discover the cause of these tremors and will be able to easily protect him from them. And, if, after all that, you wouldn’t mind praying that I continue to choose to walk in God’s peace, I wouldn’t mind that either.