I've gotten a lot of questions about his swallow.
He's been choking when he swallows stuff (and then that can go into his lungs which is dangerous) so they don't let him eat or drink. He has a NG (naso gastric) tube going down his nose into his throat into his stomach that gives him this formula stuff instead.
He has a paralyzed left vocal cord from his first surgery in April 2016. He learned to swallow despite it but extubation probably messed up that process. He should be about to regain his ability but it will take a while.
He had a NG tube from April to July 2016 (only June and July at home). He learned to drink a bottle way way faster than anyone expected, though we couldn't ever figure out how to nurse and swallow. Many HLHS kids are on feeding pumps for a long time, so this was the one thing (or it feels that way) that he's done to exceed expectations.
Being on the tube this long post-op and even longer still at home is really really frustrating because it impairs his quality of life so much. And we can't eat or drink around him because he can't eat or drink. Friday I was so over it and thinking it wasn't worth the trade. It is. It really is. But it's hard. And if it's this hard inpatient, how hard will it be at home?
9:00pm update:
I am so very thankful for today. Friday I was just despondent and overwhelmed, but today has been restorative.
Job has had a better day than I could have hoped. He still had several fits about wanting food/drink but we were able to manage them better by moving around the room and/or offering a "water pop" as a small comfort.
We had to do about six blood draws today for his MMF panel, to see how his body is metabolizing one of his immunosuppression drugs throughout the day, so the nurses were in our room a lot but otherwise we only saw the resident and the attending and Child Life.
We're really loving our newfound freedom of movement.
4:00pm update:
I woke up today fully expected today to be miserable. And it started out that way!!
But Job was so very miserable that we were given two very great mercies: a water dipped sponge every hour (no more dry mouth!) and days off cardiac monitors (we can go anywhere in the room! well, when not on a feed... but the pump is on a pole that can be wheeled around with us).
It's only been a few hours but life is sooo much more bearable for Job now.
8:00am update:
Job is almost back to full mobility. He pulled himself up to stand several times and I think he'll be standing independently by the end of today or tomorrow.
He doesn't have his baseline stamina yet but he's getting there quickly.
We're hanging out on the floor a lot today, on the mat they gave us. His cardiac monitors have long wires but he tube feed doesn't. Every three hours he gets a feed for two hours (though we'll continue to work on condensing that further), so he'll get an hour off soon and then can move around more.
But he is very very sad to not be eating and drinking. He knows foods and beverages exist and he keeps signing for them. He just can't figure out swallowing post extubation to not aspirate.
He's had some epic tantrums where it's hard to keep him safe; trashing and climbing so much. Last night he saw my water bottle and screamed and hit and kicked for 38 minutes. I would hold him until he was about to throw himself out of my arms and then I'd lay him on the crib until he was about to concuss himself hitting his head on the crib, then I'd hold him until I couldn't any more and put him back on the crib...
And he's had a couple more tantrums today, too, and just isn't interested in my distractions. He doesn't understand why I won't give him what he's asking for.
Being on the tube this long post-op and even longer still at home is really really frustrating because it impairs his quality of life so much. And we can't eat or drink around him because he can't eat or drink. Friday I was so over it and thinking it wasn't worth the trade. It is. It really is. But it's hard. And if it's this hard inpatient, how hard will it be at home?
9:00pm update:
I am so very thankful for today. Friday I was just despondent and overwhelmed, but today has been restorative.
Job has had a better day than I could have hoped. He still had several fits about wanting food/drink but we were able to manage them better by moving around the room and/or offering a "water pop" as a small comfort.
We had to do about six blood draws today for his MMF panel, to see how his body is metabolizing one of his immunosuppression drugs throughout the day, so the nurses were in our room a lot but otherwise we only saw the resident and the attending and Child Life.
We're really loving our newfound freedom of movement.
4:00pm update:
I woke up today fully expected today to be miserable. And it started out that way!!
But Job was so very miserable that we were given two very great mercies: a water dipped sponge every hour (no more dry mouth!) and days off cardiac monitors (we can go anywhere in the room! well, when not on a feed... but the pump is on a pole that can be wheeled around with us).
It's only been a few hours but life is sooo much more bearable for Job now.
8:00am update:
Job is almost back to full mobility. He pulled himself up to stand several times and I think he'll be standing independently by the end of today or tomorrow.
He doesn't have his baseline stamina yet but he's getting there quickly.
We're hanging out on the floor a lot today, on the mat they gave us. His cardiac monitors have long wires but he tube feed doesn't. Every three hours he gets a feed for two hours (though we'll continue to work on condensing that further), so he'll get an hour off soon and then can move around more.
But he is very very sad to not be eating and drinking. He knows foods and beverages exist and he keeps signing for them. He just can't figure out swallowing post extubation to not aspirate.
He's had some epic tantrums where it's hard to keep him safe; trashing and climbing so much. Last night he saw my water bottle and screamed and hit and kicked for 38 minutes. I would hold him until he was about to throw himself out of my arms and then I'd lay him on the crib until he was about to concuss himself hitting his head on the crib, then I'd hold him until I couldn't any more and put him back on the crib...
And he's had a couple more tantrums today, too, and just isn't interested in my distractions. He doesn't understand why I won't give him what he's asking for.
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