Last May, Emma came home for one week...then she went back to the hospital. It was then that we learned how serious and rare the side effects of her birth defect are. Very scary stuff. In fact, most of you don't even know all the facts, all the realities, all the decisions with which we were faced. For some of that time, Russell couldn't deal with it, and I was there to be the strong one. And, conversely, for some of that time, I couldn't deal with it, and he was there to be the strong one. There were times when we couldn't even be in the room with Emma, and we had to rely on each other or another member of our family to support our little girl. I'm not ashamed of not being strong enough. If I was the only living family member who loved Emma, I would gladly (and somehow) find the strength to be there through it all. But God blessed us with an amazing family...double digits worth of people who will be strong when we can't. They are God's angels in those moments.
Last night and tonight, Russell has been that angel. Emma hates her BiPAP mask. The air is frightening, the mask is uncomfortable, and the struggle to breathe normally is agonizing. But she has to wear it and get used to it sometime. We have been told to start out gradually. Build her up. Sounds easier than it is. Emma had not actually gone to sleep wearing the mask with the air blowing and everything; we had only put it on her for shorter periods of time while she was awake, with her spending the majority of that time screaming. But when I got home from the School Board meeting last night, I found Emma fast asleep in Russell's lap wearing the mask. He tells me she fought and cried and screamed, and he wondered why he decided to try it out by himself. Tonight we tried it again, and it turns out that I can't stand it. I absolutely cannot handle my baby crying because I know what she's crying about - she's uncomfortable, confused, and can't breathe like she wants to. I have felt the air blowing through that mask, and it is NOT pleasant. But Russell came to my rescue. He doesn't like it, but he can deal with all this. He is SO the strong one through this. Emma even reached out to me for help. She NEVER reaches for anyone when Daddy is holding her. Oh, so heartbreaking. As I type this, Emma has now been on the machine for an hour and 35 minutes. She's been asleep for an hour. Russell has even volunteered to sleep on the couch or stay there as long as he needs to, just to help her learn to sleep with the BiPAP. I love him.
In other news, Emma saw Dr. Troup yesterday. How do I explain all this info....basically, Emma's sleep and swallowing issues are caused by two things. The accountant in me needs to separate these two and explain Dr. Troup's plans:
(1) Emma's brain stem could be disorganized.
Medically, there is nothing they can do to correct this. Doctors have found in recent years that kids are "growing out of" this. Specifically, there are a few kids that one of Dr. Troup's neurosurgeon friends treats who are much worse off than Emma, and they began growing out of it in early adolescence. Up until a couple years ago, it was all bad news: your child can't breathe on their own, and he/she will be on a tracheostomy (sp?) and feeding tube forever. But now I have read about kids getting their trachs out when they're 3, and Emma's not nearly that bad off because she doesn't have vocal chord paralysis...most of these other kids do. That's what makes this really hard: I have never heard of another child with Emma's symptoms. She doesn't have vocal chord paralysis and her brain DOES tell her to breathe...but she still chokes and has sleep apnea. Most kids with breathing/swallowing problems are pretty severe - asleep AND awake, much worse than Emma.
(2) Emma's brain stem is compressed.
Many times, a compressed brain stem causes problems with breathing and swallowing. Based on Emma's MRI's from last May, Dr. Troup doesn't think that Emma's sleep apnea issues are caused by the compression, but there's a chance the swallowing troubles could be caused by the compressed brain stem.
So here are these two potential causes of Emma's sleep/breathing and swallowing problems, and there's no way of knowing which it is. The only way to determine if it's the compression is to do the decompression surgery, and THIS. IS. MAJOR. That surgery is literally brain surgery. The recovery is difficult, and it can actually set kids back just by the nature of the surgery. Dr. Troup's take right at the moment is, "She's not getting worse, and I don't want to do this major surgery just to see if MAYBE that's the cause of what's going on." Ideally, the older Emma is when she has that surgery, the better she will recover. Emma is going to have an MRI and a spinal fluid flow test in 6 to 8 weeks, which will help him make a decision about what to do at that point. So we'll go back to see Dr. Troup in another 2 to 3 months, and we'll see what he says then. In the meantime, we're going to keep cruising and trying to retrain Emma's brain to breathe well when she sleeps. We're also hoping that she can start doing VitalStim therapy twice a week at the hospital, but there's some hang-up with the electrodes. This is so stupid. The hospital has the machine to do this therapy, but the actual electrodes are the problem. VitalStim therapy helps reprogram the brain and throat muscles to swallow properly. We even volunteered to pay for the electrodes ourselves, but it's not that easy.
So all that information...and I don't even know what to pray for. Can I simply ask you to just pray? For what, I don't know...God's guidance and healing of our baby is all we know to pray for. All my life I have had very specific things for which to pray, and now I have no specifics whatsoever. Wow, will that teach you to trust in the Lord. Hey, God, I have no idea what's going on right now, and no one does, so....will you....um....heal Emma, I guess?
Ok, I've bored you all to tears. If you've hung on this long, maybe you'll hang on a little longer to see what was happening with Sweet Baby Emma this time last year:
March 22, 2010
March 23, 2010
(These particular two days talk a lot about the problems we had in the NICU...even though we face different problems now, it IS kind of nice to look back and say, ahhh, we don't have to deal with THAT anymore.)
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