It has been a busy few weeks. At this point in transplant things usually calm down, and doctors visits are more spaced out. For us, less tests and doctor visits would be welcome. Little Idan has had to go in at least twice a week for a visit and a blood test wile we are still trying to adjust his immunosuppressant dosing as well as get him off the steroids. He is on a very low dose of steroids, but his adrenal gland is still not functioning on its own. This means he tests very low when we check his cortisol levels and this can be dangerous if he gets sick or is in an accident. The doctors say it will take time for the adrenal gland to wake up and to be patient. Until then Idan will keep braving the needles and being an amazing sport during doctor visits.
One thing that is never really discussed with all the difficulties of transplant is the crazy amount of medications one is on for a long period of time. Besides the weekly infusions of antibodies, most of the months post-transplant Idan was taking between 9-11 different oral meds each day at 6-7 different time points throughout the day and night. Some days I counted 26 different oral syringes. Now Idan has been truly amazing with taking his meds, and we were lucky to not need a feeding tube during transplant, so he always took his meds orally. In the past month, we have been focused on cutting out the ones we can. We were able to cut out one of the two blood pressure meds he was on. Steroids are almost done, so that means we were able to cut out the antifungal he was on as well. Idan’s swallowing has much improved since we took him off the bottle (no pun intended) and he has been drinking exclusively with a straw for the past few weeks. This means we can cut out the liquid thickeners he was on as well as the acid reflex med. It feels really great to wake up on some mornings and only have to prepare 5 meds with his breakfast. Realizing that most parents probably dread giving their kids one medication, I think we are in a good place.
Our next big journey coming up is our return to Seattle for Idan’s one-year follow-up visit. We have started telling Idan that we are taking a trip to Seattle and will be going on a plane. Oddly, he keeps saying “home?” whenever we mention our trip to Seattle, so I guess he still has some memory of his time there. Nothing wrong with being a bi-coastal baby I guess.