our picture wall--complete with 8x10 picture of our new baby!pretty much same old, same old around here. if anything, melanie's skin is worse. we started having her wear gloves all the time, but i think it's kind of backfired. she takes them off in her sleep and scratches until she bleeds. she takes them off a little during the day, and the scratching seems even worse. she scratches with the gloves on too, of course. looks like she has new patches of scratched-up skin on her back, belly, and different spots on her arms. we are going to see another, different deramatologist on monday to see if she has any other ideas. sounds like a skin biopsy may be in the near future.
her gj tube continues to give us trouble. stomach contents are just pouring out around the stoma like a faucet. she is soaking gauze after gauze. i can pull stomach contents back through her g-tube with a syringe, and it is still draining into her drain bag; but it seems that the pressure is so high it is forcing it out around the tube faster than it can drain through the tube. her pediatrician thinks her stoma needs tightened. will have to be contacting the surgeon again.
she has been having trouble with "junk" in her lungs (we think) when she wakes up in the morning. lots of coughing and throat clearing. tuesday it was really bad, and she became quite distressed, face flushed, temp elevated, heart rate elevated, struggling to clear her lungs, increased respiratory rate, etc. we did all her inhalers and neb and she still didn't get relief. it lasted for quite a while and slowly tapered off throughout the day. she was crying she was so distressed over it in the morning. she hasn't had that much trouble with breathing/coughing/clearing secretions for a long time. we are trying to do her inhalers and nebs as one of her first cares in the morning now. she is still having issues, but not as bad as tuesday.
the melatonin is definitely helping melanie fall asleep faster at night. she still wakes up in the middle of the night and sometimes early in the morning, but overall i'd say she's getting a little more sleep than she was.
she is still having irritable times, especially when her g-tube is not draining adequately, but we are increasing her lyrica more which seems to help with some of the stomach pain. she has been having intermittent blood clots draining from her g-tube which is a chronic, intermitent problem.
she has been having autonomic facial flushing at least once a day, usually in the afternoon. most times it includes an increase in temperature, but we are not sure what it is related to.
yesterday the kids and i made fall cut-out cookies. we colored our frosting to make orange pumpkins, green apples (ethan requested the green :), and purple flowers. the kids had a great time and melanie wants to make more again today.
ethan wasn't feeling the best this morning, headache, tummyache, slightly elevated temp (99.5) but he seems to be doing fine now. not sure if he is coming down with something or if it was just a transient not feeling well.
for some exciting news . . .our deck is complete!!! a huge thanks to my dad who put in many hours working on it alone (while scott was at work). scott helped when he got home from work, and they finished it last night! we are very excited! a little warmer weather and we could enjoy it more, but i think scott is going to try to get the grill up there and throw some burgers on tonight. yeah!
ethan getting ready to go out on the deck
as for me, i'm feeling ok. still not well enough that i dare skip a day of b6 and unisom, but i am thankful those things are helping me feel better. waiting for that "burst of energy" that is supposed to come in the second trimester . . .??
a couple pictures from when ethan and i went to the apple orchard this week.
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