Today was a restful day for Brian. He was pretty exhausted all day today. I think I only saw him open his eyes for maybe three seconds max in the entire time I was at the hospital today. All the therapists coming in to work with Brian yesterday really wore him out.
Physical therapy and occupational therapy did come by again today. They were with Brian when I arrived at the hospital and had him sitting up on the edge of the bed. He was able to do this without any support even while being so tired. He sat there for probably 10 minutes and then they put him in the wheelchair again. He was very comfortable in the chair today and just kept sleeping while sitting in it. Speech therapy also came by again today and tried the speaking valve, but with Brian being so exhausted, there wasn't any success with that today.
Something I forgot to mentioned yesterday is that the speaking valve cannot be left on when Brian is sleeping because if it gets clogged he could suffocate (clogging is also a concern when he is awake, but we would be able to see it happen and remove the valve). So the valve can only be used when Brian is awake and responsive. So today was pretty much a no go for the speaking valve. However, he still had the internal balloon deflated when we left the hospital this evening so that is so great to see too.
Another potential contributing factor to Brian's exhaustion today was likely due to his breathing. Yesterday they put Brian on the trach collar in the late morning and he has been on that ever since. He hasn't needed to used the ventilator! This is AMAZING progress for him since previously he would get pretty tired after several hours and his respiratory rate would drastically increase, so they would put him back on the vent overnight to give him a rest. But since he's doing so well breathing only using the collar, the left him off the vent overnight and continued throughout the day without issue! AND since he did so well without the vent the respiratory therapists removed his ventilator from his room completely this evening!!! 👏👏👏👏👏👏👏👏👏
So even with today being quite, he still had such a phenomenal day! 🥹
🤍
Go Brian, Go!
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