A little update on Felix . . .
(I provide an explanation of his condition here . . .)
We’ve been in the London Children’s Hospital for four weeks now. Felix is six weeks old. It feels like we’ve been living a whole different lifetime.
Before Christmas, Felix finished his rounds of intense antibiotics for the infections in his lungs and bladder. It was wonderful to have his IV out again — he was down to just oxygen prongs in his nose (as seen in the picture above), which made holding and cuddling him so much easier. None of his symptoms were worsening, so we were just coasting for a few weeks. His breathing and crying still sounded a bit coarse on and off, and he still needed a bit of oxygen, but neither of those issues was overly concerning. It’s typical of SCID-ADA babies to need a bit of oxygen until they start treatment. The main lingering concern was his feeding . . . he still wasn’t eating enough to gain a good amount of weight, but it was okay enough that we weren’t taking action, and this is also pretty common among SCID babies.
So for a while there, Felix had no new tests and no new treatments . . . we were just staying in isolation in the hospital to prevent exposure to germs, and waiting for the paperwork to go through for him to start his enzyme replacement therapy (what I’ve also been calling ADA injections, or PEG-ADA). This treatment is enormously expensive, and there is a lot of paperwork to be done before the hospital can cover it and start administering it. We’ve been waiting and praying for this process to finish up, as we are very hopeful that we will see huge improvements in his overall health when he starts — to the point where he might even be able to come home in a few weeks.
Things took a slight turn for this worse this morning. Repeat chest x-ray last night showed some slight abnormalities (streaks) in his lungs, and his oxygen saturation levels were getting a bit lower, requiring more oxygen. However, he wasn’t showing any other signs of infection. After almost a full day of deliberation, the doctors decided that perhaps he was getting milk in his lungs when he drank, which could explain a number of things, including the streaks in his lungs.
So today Felix had to go through all kinds of awful things again . . . nasal swab, throat swab, blood cultures, urine samples, a new IV with new antibiotics, and a feeding tube. Fortunately we have amazing nurses and they were able to do all the in the span of half an hour. The doctors are on the alert for any viruses or bacteria that might show up in his tests, and his sucking and eating patterns will be assessed by specialists to see if they can figure out the source of the abnormality in his lungs.
So new he’s all tangled up in tubes and wires again. He won’t be able to take food orally for a while. I absolutely hate the thought of more antibiotics in his poor little body, ravaging his intestines. Picking him up and holding him is quite the task.
But at least he still seems fairly comfortable, and doesn’t show any strong signs of illness.
We also got the disheartening news that the paperwork for the enzyme therapy has been stalled . . . they’ve run into bumps with the funding. The sooner he can get treatment, the sooner he can get better and come home, but red tape is getting in the way. We hope we don’t have to wait for months to get it sorted out.
So that’s where we’re at. Waiting for results, waiting for funding, hoping and praying for improvement.
If you’re so inclined, please pray that the paperwork goes through and we can start treatment as soon as possible. Also, in the meantime, pray that none of his symptoms get worse. I also feel sick with worry that his gut will never recover from the formula and the antibiotics — two things I know can be devastating to lifelong gut health — so please pray that both he experiences healing with time and that I don’t waste energy on useless worry.
Thanks so much. I intend to provide more updates on life in general when I get the chance.
Your continued love and prayers mean more to me than you know.