Happy 10-month birthday to Jack and Sam!
I am writing this in a bit of a rush, so please forgive the pared-down prose… The days feel short and compact now that I am back to work. Sam has started day care and seems to love it (he started climbing stairs yesterday, as if to show us what “big kids” can do). I have been occupied making calls to nursing agencies and nurse-provided day care agencies, while John has spoken to medical equipment delivery companies. We’ve started the process of looking at strollers with vent trays so that Jack can have a bit more mobility. The folks from occupational therapy should be by today to show me some strollers and see if they can fit Jack into one of them for his hospital stay.
On Friday, we will have our first meeting with the rehab team, which should give John and I a better sense of our timeline. There is encouraging talk that Jack may only be here for another six weeks or so… but we’ll wait for a more definitive plan on Friday.
Unfortunately, Jack has been put on isolation “for the remainder of his stay”. The bacteria that was found in his trach, stenotrophomonas, is not a common one to be found in kids like Jack, and although he has been treated for it, it can lie dormant for up to a year. This can cause problems for other Nemouors patients who are immunologically compromised, or who have trachs. The good news is that this is not the kind of bacteria that can easily cause infections in regular, healthy people without trachs. So, while we can all safely hang out with Jack, Jack can’t leave his room or interact with other patients. He’s also still experiencing some setbacks with his feeds, which are frightening, but since his trach is still cuffed, I feel a certain measure of security. Still, it’s a bummer.
Thankfully, those are the only real bummers right now. Otherwise, Jack is “a rock star” during his therapy sessions, specifically with PT and OT. Yesterday, John and I got to witness Jack doing some tummy time with Patty, his OT. It is so hard for him to lift his head that he has not tolerated tummy time at all up to this point. However, he stayed on his belly for almost a half hour, picked up his head numerous times and even used his arms to push himself up a bit. It was amazing. We whooped and hollered and cheered! Jack gave us a big half-grin. There hasn’t been much progress in terms of his speech therapy from what I can see, and there hasn’t been any signs of him regaining his ability to swallow. All things in good time, I can only hope.
I hope to update again on Friday to let everyone know how the rehab team meeting went. Until then, I’ve got to get busy following up on our Medicaid application….