Oliver has been doing great since the surgery! He's on minimal ventilator settings again, he seems very comfortable with his new trach tube, and his tracheostomy (the opening in this neck) is healing well. We're working now on getting him back onto his home feeding schedule and on changing over to a home ventilator. His milk has been supplemented for a few days now with medium chain fatty acids which may help his energy and stamina if his underlying condition is a disorder that causes difficulty in metabolizing the larger molecules in food.
He has been very awake for much of the last two days. Today he did great with his first trach tube change by the ENT (Ear, Nose, Throat) doctors, plus he stayed awake, alert, and happy for a full 30 minutes of physical therapy, got really interested in his oral care (part hygiene, part therapy for working on his oral skills again), and "played" with me while I held him for an hour, with only short naps in between! The most fun part of his recovery to see so far has been his interest in his pacifier now that his mouth is free. His speech therapists (for eating/oral skills) are really pleased that he's interested in things being in his mouth already, so soon after being extubated. He's only sucking lightly on it now, but when it falls out it's really funny to watch his little lips and tongue searching for it again! It has also been funny watching the nurses fall in love with him and his handsome-cute cheeks now that you can see his face and he's awake more. (The rolled-up washcloth is helping him keep the pacifier in the photo below.)
Since he's doing so well we were really hoping to be home next week, but we've learned that we really won't be getting home for another week and a half at earliest. The delay isn't because of Oliver, but because, with Thanksgiving and several other people set up with home ventilators in southern Oregon, there won't be a qualified home health care nurse available in our area to get us set up with the appropriate equipment at home until the Monday following Thanksgiving, at earliest.
This was really disappointing. I don't feel a need to be home for Thanksgiving per se, but that I hate the idea of Oliver being stuck in the hospital longer than he really needs too. Praise God that within a few hours of learning this I realized some very real benefits of us being here a bit longer - while in the hospital Oliver gets seen every day by physical therapy and speech therapy, and when we get home we'll only get to see them once a week, at most. I'll get to talk to the pulmonologist as frequently as I want and can push them to wean the vent settings as low as we can before being discharged, after which we may check in with them weekly, at most, and probably often not in person. We're getting to see opthamology while we wait instead of making a whole separate trip up here to figure out what's wrong with his vision - it won't be a full assessment but they are going to do as much as they can while were here. We may still be here when his metabolic tests get back so we can immediately discuss the results, in person, with the metabolic specialists, and we'll also get a bit more time to evaluate the effectiveness of his new supplements. So when we do get home, Oliver will be that much stronger and ready to go.
We don't know the full reason why we have to stay longer, and even with all the advantages I can find it still would be so much better to be together at home and no longer depending on all the wonderful help we've been receiving, but as long we we're here we'll trust that God's plans are better than ours.
I got to take a walk for about an hour today when there was a break between all the doctors and specialists stopping in. The sun was actually out today! I especially enjoyed the vantage from one hillside - the children's hospital and blue skies on one side (Oliver's room is the the lowest square window on the left corner),
He has been very awake for much of the last two days. Today he did great with his first trach tube change by the ENT (Ear, Nose, Throat) doctors, plus he stayed awake, alert, and happy for a full 30 minutes of physical therapy, got really interested in his oral care (part hygiene, part therapy for working on his oral skills again), and "played" with me while I held him for an hour, with only short naps in between! The most fun part of his recovery to see so far has been his interest in his pacifier now that his mouth is free. His speech therapists (for eating/oral skills) are really pleased that he's interested in things being in his mouth already, so soon after being extubated. He's only sucking lightly on it now, but when it falls out it's really funny to watch his little lips and tongue searching for it again! It has also been funny watching the nurses fall in love with him and his handsome-cute cheeks now that you can see his face and he's awake more. (The rolled-up washcloth is helping him keep the pacifier in the photo below.)
Since he's doing so well we were really hoping to be home next week, but we've learned that we really won't be getting home for another week and a half at earliest. The delay isn't because of Oliver, but because, with Thanksgiving and several other people set up with home ventilators in southern Oregon, there won't be a qualified home health care nurse available in our area to get us set up with the appropriate equipment at home until the Monday following Thanksgiving, at earliest.
This was really disappointing. I don't feel a need to be home for Thanksgiving per se, but that I hate the idea of Oliver being stuck in the hospital longer than he really needs too. Praise God that within a few hours of learning this I realized some very real benefits of us being here a bit longer - while in the hospital Oliver gets seen every day by physical therapy and speech therapy, and when we get home we'll only get to see them once a week, at most. I'll get to talk to the pulmonologist as frequently as I want and can push them to wean the vent settings as low as we can before being discharged, after which we may check in with them weekly, at most, and probably often not in person. We're getting to see opthamology while we wait instead of making a whole separate trip up here to figure out what's wrong with his vision - it won't be a full assessment but they are going to do as much as they can while were here. We may still be here when his metabolic tests get back so we can immediately discuss the results, in person, with the metabolic specialists, and we'll also get a bit more time to evaluate the effectiveness of his new supplements. So when we do get home, Oliver will be that much stronger and ready to go.
We don't know the full reason why we have to stay longer, and even with all the advantages I can find it still would be so much better to be together at home and no longer depending on all the wonderful help we've been receiving, but as long we we're here we'll trust that God's plans are better than ours.
I got to take a walk for about an hour today when there was a break between all the doctors and specialists stopping in. The sun was actually out today! I especially enjoyed the vantage from one hillside - the children's hospital and blue skies on one side (Oliver's room is the the lowest square window on the left corner),
and a moss drenched stairwell on the other (the photos from my phone camera don't do it justice - the sunbeams on the bring green was stunning).
Thanks for updating! We'd been wondering how you all were doing. Sorry your stay got extended, but hopeful it will all be to Oliver's advantage. How exciting that he's doing so well and having fun!
ReplyDeletenonstop prayers your way. what a remarkable little boy!
ReplyDeleteall of our love,
tia, zac, logi & ben