Those of us that deal with EB on a daily basis get accustomed to the fact that there are times when our kids are in pain. It is a terrible fact of life with EB. There is a term in psychology for it, learned helplessness. Sometimes it can be overwhelming, other times it just makes you mad. But you carry on and you take your next breath and feel your heart beating strongly against the bottom of your throat and you try your hardest to not let your kid see you in pain. It’s important to do that. To take your next breath. To look forward and fight through the learned helplessness. To instill the thought that the pain doesn’t have to own you, that you can live past it, live through it, and hopefully one day, live without it.
Today was a difficult day. Earlier in the morning, without any real warning, and while she was still asleep, Rafi threw up. Even though she was on her side we were worried that she aspirated and had some fluid in her lungs. She had some signs of respiratory distress, flared nostrils, breathing from the stomach and a slight “raspiness” in her breaths. Our nurse agreed and in came the portable x-ray machine. Everything turned out fine but there is some fluid in those lungs, but apparently nothing to be worried about. Jackie figured out that we inadvertently did not vent her gtube overnight. We had the extension wrapped in an infant diaper (to catch the excretions, but I didn’t take the cap off the extension). So what we think happened was that fluid built up and after almost 11 hours of sleep enough accumulated and made Rafi sick. On top of that, Rafi is now retaining a good amount of fluid so that didn’t help her breathing. She’s gained about a pound a half so far. It’s our hope that Rafi will respond to the additional doses of lasix and get rid of the weight.
The mucositis just keeps getting a little worse and it is clear that, at times, she is uncomfortable. We are giving her more bumps of the fentanyl to try and keep her as pain free as we can. There are times that she fights through it, raises her head with a smile or gets excited about something. She likes to look for Shrek in our DVD case and for a brief second of two, when she eventually finds it and says “ooo, Shrek, I found it” it’s like we are back home and she is her normal self.
Then the realities of the stem cell transplant take over. She is still running very high fevers, she is bloated to the point of not really looking like herself, and she is drugged enough to not being completely in the moment. I am fine with that last part though. It’s a fine line in keeping her drugged enough to not feel pain, to not compromise her respirations, and to keep her aware of the world around her. We are in the truly difficult time of transplant so for the next two weeks if she is not aware that it is Sunday or that it is sunny outside, so be it.
It’s now Sunday morning, I fell asleep typing this last night, so now I am back at the hospital just finishing a bagel and coffee with Jackie. It was a long night for the two of them. At some point in the night, they started blowing humidified air by her to hopefully clear up some of the mucus in her airway. There are also doing more cultures for influenza A and H1N1 to see if we can figure out why she is still running these consistent and high fevers.
Off to start the day, a new day, and hopefully a better one.