We had an unusual day this week: the Infectious Diseases doctor — and the main doctor overseeing Felix’s care — came with us on the two-hour drive home to check out our house. It was my first time seeing my home since the beginning of December (almost four months).
We might be able to take him home soon, but we have to make sure our house is safe for him. The enzyme injections have begun to help him build up a bit of an immune system but it’s not even close to normal yet. He’ll still be in isolation until gene therapy (we’re still hoping for June), and then for several months after that as well. Lydia won’t be living with us, since she’s a swirling vector of germs. We have to be very careful not to expose him to viruses, bacteria, fungi or or spores from the outside world.
It was an encouraging visit. Our doctor thinks that as long as we keep the windows closed, don’t use any fans, keep his area scrupulously clean, and take the appropriate precautions before handling him (sanitizing our hands, etc), we can keep him on the main floor of our house. We can’t accept any visitors. We have to remove anything that will gather or stir up dust. We have to routinely sanitize all of his toys. We’ll also have to boil any water used for feeding or bathing him. Things like that.
I only cried when she told us we couldn’t use cloth diapers or the special baby hammock we’d bought him. I wasn’t surprised, but I was still sad.
If he continues to do as well as he has been doing, we might be able to take him home in a few weeks. We just have to work out how things will work with visiting nurses, hospital visits, etc. He’ll still have to get regular medicines through his central line. He’ll still get most of his nutrition through the NG tube, but we can take care of that.
I’m terrified and excited. There are so many ways an immune-deficient person can get sick that I never could have imagined. Who knew that houseplants could be dangerous? Or a ceiling fan? I’m so scared something will happen and it will be our fault. But I’m also looking forward to sleeping in my own bed, cooking in my own kitchen, and being only ten minutes away from Lydia. Just being able to feel a little more normal again.
And while I’m talking about my anxieties, I want to articulate my hugest prayer request:
Please pray that Felix can remain free of infection or anything else that might exclude him from gene therapy. Pray that he makes it to gene therapy and that it works, restoring his immune system, so he can live a healthy life.
Felix needs to be in perfect condition to be eligible for gene therapy. Since it’s experimental, the doctors only want to test it on the best possible candidates. They want the best possible outcomes so that it can be approved as a therapy. That means he needs properly-functioning organs (including his brain) and he can’t have any active infections. He has already gotten scarily close to losing eligibility when we discovered he had CMV, and again when he started having seizures. My greatest fear is that he will lose his spot and lose his best chance at recovery.
To be honest, it feels like all my previous prayer requests have fallen flat so far (i.e. that his initial screening would prove to be a false positive; that Lydia would be a donor match; that he wouldn’t get any viruses; etc), but I just don’t know what else to do. Prayer is all I have.
Thanks again for all your love and support.