(guest post by Kate)
Adam is doing great! He had a full day of evaluation on Thursday where all of the different services came and put Adam through his paces. Yesterday was Adam’s first day of his regular schedule of therapy. He starts at 9:30 am with PT and his therapy continues until 3:30pm, with some half hour breaks in between. The physical therapist got him out of bed (they have this very cool hoyer lift suspended above his bed) and into a motorized wheelchair, but Adam was a bit too tall for the chair. His physical therapist is going to come back with a different one on Monday. Instead, they got him sitting on the side of the bed, which he did for nearly 5 minutes and largely self-supporting. They have all of these neat things to put on him to help increase his blood pressure when he sits up so he’ll get less dizzy. He wears a lovely pair of stockings that come up to his thighs and what sounds like a corset to go around his waist. Adam will definitely be working with the tilt table, which he gets strapped to and gradually works him towards a standing position by degrees (and over time), to get his body used to being in that position again without dropping his blood pressure.
Speech also came and did more work on Adam’s swallow. On Thursday he ate dyed applesauce and finished the entire 4 ounces, which he declared, “tasted like ambrosia”. Yesterday, he ate dyed ice chips. After feeding one or two to Adam, the Speech therapist asked if he could feed the ice chips to himself and he did! He’s having to use his left hand (despite being right handed) simply because that side is stronger at the moment. There was only one ice cube that hit his shirt - the rest went into his mouth. He’s still having some blue tinged secretions coming out of his trach, so he’s going to need a barium swallow test so they can see exactly where things are going, but his swallowing function seems fine. Speech thinks it may have to do with his vocal cords or the protection of his airway. Adam also spent more time with his speaking valve on, which was great. We played our home voicemail message for the speech therapist so she could hear that Adam’s voice is quite a bit deeper than how it sounds with the PMV on. It sounds like an ear, nose and throat doctor is going to take a look at Adam’s vocal cords with a scope to see how they’re moving. That will likely happen next week at some point. In the meantime, Adam’s going to have the valve on as long as he will tolerate it. The pulmonologist came and put in a smaller sized trach in Adam yesterday, which will make it easier for him to bring up his secretions when he has the PMV on, and allow more air to come up around the trach. It will also make it easier for the team to put a “red cap” on the trach, which blocks off the trach entirely and makes Adam breathe through his nose and mouth. Obviously, this will be a training process and Adam will have to work up to it, but these are all exciting developments that are helping bring Adam closer to not needing the trach at all.
The full day of therapy was tiring for Adam, but in a good way. He did everything asked of him without any complaints and lots of jokes. It’s really amazing to see all that he can do. What a difference a week makes! He got his first tub bath in forever on Thursday morning (he was basically on a stretcher with sides, and taken to the tub room where they can use a shower sprayer to wash him down) and LOVED it, and immediately asked how frequently this could happen. It sounds like it will happen weekly, with daily sponge baths in between, but once he’s more mobile he can go in the shower with a shower chair.
Everyone at Helen Hayes has just been fantastic - we’re so happy Adam is there and he’s happy too. I know I’ve mentioned this a lot, but it’s a really top-notch facility and we’re exited to watch all of Adam’s progress in the coming weeks.