Jaxson had his 12th surgery on December 5, 2015. It was his second open-heart surgery, the one where they placed his mechanical mitral valve. We spent three weeks in the hospital last year, but were lucky enough to make it home three days before Christmas. Jaxson's first Christmas was spent at the hospital when he had RSV at 5 months of age. He was discharged on Christmas day. I had to go back and look, but his second Christmas was spent at home. Only that year we were struggling so bad that the kids barely got anything from us. We did get donations that year, though, and the kids still had a good Christmas. It might not be Christmas yet this year, but it's pretty damn close. And here we are at the hospital once again with a case of RSV.
RSV is a respiratory virus that can cause bronchiolitis or pneumonia in children who have heart and lung disorders. In typical kids, it's a cold that requires monitoring and comfort as it mimics a common cold, but nothing more. In kids like Jax, it can be deadly. Most kids get it before the age of 1, but only a few who get it will get it again. This is Jaxson's second round with it, at an age it doesn't normally happen. On top of that, he has angiodysplasia of the colon (meaning the capillary blood vessels are weak and break easily) which causes bloody stool. Combine that with a high INR and now he has low iron. All of his other levels seem to be okay for the moment, but they are checking him regularly to make sure nothing drastically changes.
And thus is the ugliness of Kabuki Syndrome rearing it's even uglier head. Respiratory problems are common, and while Kabuki itself does not cause premature death, the problems it causes can. Like intense respiratory infections and viruses that don't respond to treatment, or take a really long time to do so. And here I thought Jaxson was going to be relatively "typical" from this point forward. I guess the joke is on me for putting on rose-colored glasses after a year with no admissions. (There was actually one, but it was only one night and it was to keep him hydrated for a procedure.)
So now that I've been brought back down to Earth, I have been doing some research on RSV and all of his other stuff. Nothing noteworthy yet, I haven't found anything that I didn't already know. But I do know that we won't be getting out of here today. And here I thought we were out of the woods. I forget that when you have a child with CHD who is also prone to respiratory problems, you are never out of the woods. Every illness is alarming. Every hospitalization has its own problems. Even if it's an illness that's happened before, this one will be different. It's an ever-changing thing because kids grow and change, their hormones and antibodies and bloodwork levels change. The way they react to treatment changes. It's an ongoing battle of figuring out what the problem is and how to tackle it in the most effective manner.
It is clear that winter is going to be a rough time for the rest of our lives. Keeping Jaxson healthy and out of the hospital has been near impossible over the last four years, with the exception of this past year, and I don't see it changing anytime soon.
The thing is, while worrying about Jaxson is always in the back of my head, in times like this I always worry about Jeffrey too. He's so worried about his brother, and because of flu restrictions, he can't come up and visit because he's too young. Both of them are cranky about it. And Jeffrey misses me, and I miss him. He gets shafted on so many things, we decided to take him to Chuck E. Cheese for his birthday last weekend. And then Jax gets sick. And Jeffrey loses out on doing certain things. We always try to keep it as normal as possible, but it's never normal when Jax isn't around. For instance, tomorrow the boys were supposed to go to the school where my dad works to play games and see Santa. Jaxson will not get to go now, but Jeffrey will. Only he won't have as much fun because Jax won't be there and he'll spend the whole time thinking about his brother. On Sunday, I had scheduled a private visit with Santa so we could get some decent pictures without the crowds. Not sure if Jax will make it for that either. I honestly don't think Jaxson has any photos with Santa yet, and he's 4. But Jeffrey will not like going on Sunday without Jaxson either and it's likely that he'll ask Santa for something for Jax. It just breaks my heart.
For now, I hope the doctors get to us soon so we can find out what's going on and what the plan is. I know we'll be here at least one more night, but I'm not sure if they have concerns over anything else yet. I pray we can go home tomorrow, or maybe even Sunday before photos. Please pray for the same with me.
