Yesterday the doctor made a lot of changes. One of the most significant is to take her off her chronic diuretics. This what they tried to do after her g-tube surgery when she was all the way down to 3/4 liter and she eventaully wound up going all the way to 3 LPM before they put her back on them.
Her liter flow is currently 2.5 Liters, but her oxygen requirement went up from 25% yesterday when I left to 40% this morning. It may be that with the lower liter flow she needs more oxygen, but it could also be the lack of diuretics. She gets her third diuretic (lasix) today so maybe this will make a difference and her requirement will go back down.
The doctor's reasoning is that now that she has the fundo she won't be refluxing and she won't be micro aspirating, so there won't be additional fluid in her lungs which is what the additional diuretics were for. We'll see, but it seems like we've been down this road before and it was a cul de sac.
Other changes:
Her feeds are every four hours over two hours right now. Because she has been on continuous feeds for several weeks prior to surgery her stomach shrunk in size and he wants to gradually shorten the duration of the feed once the stomach has had time to stretch out and accommodate the increased volume. (We can resume feeding her orally today. She has been doing a lot of putting her fingers near her mouth and licking them and also licking fabric. She seems to have really been getting into applesauce and peaches so I have hopes she will have an even better appetite now that she isn't feeling it burning as it comes back up.)
They are doing some of her blood work every other week instead of every week.
Her thyroid medication may be stopped but we must consult with endocronology. They have been testing her thyroid levels every month and they have not needed to adjust the medication dose and it seems she is on the high side of average now on her hormonal levels. This is fabulous news.
All in all it seems they are trying to get her down from her 8 meds down to a more manageable level and are kind of preparing us for going home (again). But I am not holding my breath especially with all this messing around with diuretics. I won't believe we are going home until the baby is in the car seat and I see Memorial Hermann in my rear view mirror. Of course if we stay much longer, Amelia may be driving the car home.
Amelia will not go to sleep. She wakes up at 4:00 am and by the time I get there at 10:00 she may have taken a 15 minute nap, but she usually is very bright eyed and bushy tailed. She usually crashes in the afternoon around 3:00 but she still won't admit defeat. I have found that she really does better sleeping in her bed rather than being held. Usually she keeps her arms flailing around and she keeps herself stimulated and awake. I put her arms to her side, place a blanket over her and tuck it so her arms are pinned. Then I lay a piece of cloth near her mouth so she can lick it. Then I turn on her mobile or put a mirror near her so she can gaze lovingly upon herself. She usually goes to sleep within minutes. Kids are weird!
1 comment:
Dear C&T,
Kids aren't weird necessarily, just trying to find a comfort zone that suits them. Amelia has had a great deal of turmoil in her short little life, and is working out her own pasi. Thumb sucking, finger sucking, rubbing a soft baby blanket between their fingers, rubbing their faces with their blankie, sucking their binkie, are all ways to give them the satisfaction they're in need of.
Amelia seems to really be moving along, now. I pray she is in posession of all that she needs to find her way home......Keep up the hard work, Love Grammy
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