Felix has been doing pretty dang good this week.
All of his test results and the numbers on his monitors have been positive. CMV counts are down, lymphocyte counts are up, his temperature is down, his oxygen saturation is up, his heart rate and breathing are down, etc.
But more importantly, he’s looking and behaving healthier.
His mucousy cough — that he’s had since he was a week old — is completely gone. His breathing is so improved that he’s been taken off of oxygen, which he’s been on since he was admitted at the hospital eight weeks ago. No more prongs in his nose! He’s got more energy to cry and complain, and when he does, his voice is strong and piercing rather than weak and raspy. He’s got energy to kick his arms and legs and even drink from a bottle a little here and there. He loves to be held and to look around. And he’s starting to smile.
The enzyme injections are working. They are helping his body to build up lymphocytes so that he can fight off infection.
We’re becoming cautiously optimistic. If things continue to go well, we might be able to take him home in a month or so. We want to start working on feeding him orally again, and we’re starting occupational therapy to encourage his development (he’s lagging a bit due to chronic hospitalization. All the doctors tell me not to worry.)
When we get good news our doctors dance and chatter and jump around. Ben and I smile quietly and hold hands. I can’t let myself get too excited. We still have a long, scary, risky road ahead of us.
This is not even close to the end of treatment. Enzyme replacement is buying us time. It is typically only effective for a year or two. Ultimately, he still needs to go through gene therapy (which is what we’re gunning for) or a bone marrow transplant as a long-term solution. They’re both risky procedures with uncertain outcomes. And both require him to remain in isolation for at least six months (possibly two years) afterwards as he recovers. And we don’t even have a spot for gene therapy.
But some nights I go to bed and don’t feel sick with worry. That’s something.