Jack is doing better after a restful weekend. He is now on a new round of antibiotics to fight a second trach infection. Looks like doctors finally found the cause of the fevers, since he has been fever-free since these new meds were started. The pulmonology team has decided to take a different approach with Jack after our aspiration scares last week. Now, rather than uncuffing the trach, the plan is to work on Jack’s vent settings in order to wean him slowly off of vent support. He has had a few c-pap trials, wherein the vent is providing pressure support, but not feeding him any breaths. Jack has done extremely well with those trials, giving us reason to hope that he may not need to be on the vent 24 hours a day for very long. In fact, he tolerated three whole hours of c-pap with flying colors this afternoon!
As I mentioned in previous posts, Jack will require an uncuffed trach if he is to learn to speak using his own voice. But since his swallowing remains a major issue, the respiratory therapy team (and Jack’s parents, for what it’s worth) want to hold off for a bit longer on uncuffing him completely. Working on the vent is a good way to progress, so I’m happy with that for now. All things in their own good time.
This weekend, Jack got to get out of his room for the first time in weeks, Although the field trip wasn’t extensive… he got to sit at a table only ten feet from his room…. he really seemed to enjoy the experience. He could look out the window and hang out with Nana and Da and our dear friend Bob, a fantastic respiratory therapist who has been watching over Jack since PICU days. Here’s Jack and his proud mama during his field trip.
(I think Jack is reaching for Da’s nose.) Jack also spent some time with Laurie and Andrew, our dear friends who sat with Jack so that John and I could get our taxes in order.
We had a mishap on Sunday morning when Jack’s feeding tube malfunctioned. The feeding tube is held in place on the inside of Jack’s tummy by a small balloon. This balloon broke, and thankfully, Dr. Berman, who had initially placed Jack’s tube and his central line, was available to re-insert a tube for us. Eventually, John and I will learn how to re-insert a tube ourselves if such a thing happens again.
Jack has reached two major milestones since my last update. The central line has been removed! Finally, one less accessory. The dressing for that line covered up a quarter of Jack’s abdomen, so it’s much nicer to be able to bathe, kiss, and hug him without it. Again, Dr. Berman to the rescue! The second milestone… Jack is now considered medically stable enough to flip over to the rehab service! Hooray! This means that he will have longer, pre-scheduled visits with PT, OT and speech therapists each day. Therapies will also be coordinated more tightly, and we will have weekly team meetings with the doctors and therapists. Because he will have a set schedule, it will be easier for John and I to plan our weeks in advance, knowing when any medical procedures might be taking place, or when Jack is likely to be alone in his room, needing visitors, rather than engaging in therapies.
I am also hoping that the rehab doctors will be able to give us some sense of how long Jack will remain in the hospital. So far, we are still without a timeline. A few weeks? A few months? We have no sense of it yet. I hope that is coming.
John and I changed our first trach together today (he took the old one out and I put a new one in). It went just fine, thankfully!
Sam is doing well also. He is enjoying exploring the world through grocery trips, trips to the park… even trips to the doctor’s don’t seem to phase him. He’s entered the phase in which children crab and fuss unless they are given unlimited freedom. Freedom to eat the cat’s food, freedom to fling one’s body off of the couch, freedom to alligator-roll during a diaper change… why can’t parents just give intrepid explorers what they want? I must admit, it’s hard to deny such a cute kid…