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| Look Mom, no more tape on my cheeks! Bye, bye, NG tube!! :D |
So....the doctors are starting to use the "H" word, along with actual target days now! The plan is, if Mason continues to improve, they are shooting for Tues or Wed. to go HOME!! :D The level of excitement around our house is climbing...we just want it to be for real!!
His follow-up apptmts are mostly all set up, except for his pediatrician and genetics (that doctor doesn't want to see him for 6 mths so it'll be a while until we have a "next step" there).
Neurology said they don't want us to have emergency seizure meds at home but they DO want us to have oxygen to be delivered by cannula if he is blue (no matter how long he is blue). They are not sending us home w a pulse ox monitor, but with a heart and resp monitor to be worn at night because "the fact that his heart drops with seizures is worrisome." and the pulse ox is not very reliable - as we know it doesn't pick up well sometimes and the doc thinks it will keep us up all night with false alarms. (well, if you ask me, if a heart monitor is gonna alarm off every time he bradies....which is when his heart rate drops, which happens A LOT when he is sleeping and doesn't have anything to do with a seizure most times, well sheesh. No sleep that way either. Anyway we'll have to figure that out. I guess we can buy our own pulse ox if we need one and use that if it's more helpful (they aren't too expensive).
The doc is bumping up his feeds again today, not by amount, but going to 110 mls in only 30 minutes (instead of an hour) "because life will be a lot easier for all of us that way" ... according to the doc. I told him that might be too fast since Mason had trouble before surgery with only 90 ml in an hour, and now his stomach is half that size due to surgery...but he said "the stomach is highly stretchable, he should be fine if given a little time. consider Thanksgiving." Anyway...so PRAY for him please because all of them agreed he should move to 30 minutes. They said if he is having issues they will leave it at an hour but they want to at least try. Because if he can't do it in 30 minutes then there's no point in bottle feeding because that will happen over an even shorter period. If it goes well, he can start trying to eat from a bottle again tomorrow. We'll see if his throat has healed enough from the reflux and surgery to go for it. If not I may wait until after he gets his Mickey button (7 weeks from now) to try again, just so he doesn't associate eating with pain. Here will be the schedule at home if he can do it:
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| On a "chimney feed" to vent (burp) his food through the G-tube. Starting today he is off the chimney and can just vent for a few minutes in the middle of a feed if he needs it, just like a regular burp time. |
9 am-9:30 eat
12 pm eat
3 pm eat
6 pm eat
9 pm start continuous feeds through 6 am
They are going to teach me how to draw up his meds before we go. Today the nurse is trying to get his hearing screen set up for this evening. He has to have a car seat test before home which the dr said he imagines he will pass "with flying colors". Also, they are setting up a cardio consult for after home and repeat echo because there was another finding on all his heart tests we haven't heard yet - some kind of "prominent ventricular muscle bundle" to follow, but the doc told his team "well it hasn't caused heart failure yet so I think it's probably not too significant." They just said it was a consistent finding with each of the tests and his PDA is still there a tiny but so we'll see. The opthamology resident is coming by to check his eye pressures to see if he can stay off the glaucoma meds or if he has to go back on.
That's the update for now, he's sleeping well and has had physical therapy this morning, much to his disdain.
Thought for today:
"We stopped relying on ourselves and learned to rely only on God, who raises the dead. And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in him, and he will continue to rescue us. And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers..."
2 Cor. 1:9-11 NLT
