My hands are my favorite toy...hands down.
Jump around! This is good therapy for my legs.
We received Amelia's eye patches in the mail and she wore her first one yesterday. She didn't hate it as much as her billirubin goggles, but she still didn't want to wear it for a whole 2 hours. She wore it for about 30 minutes which is much better than the 5 minutes from the other 2 days. I hope after a while her eye muscle won't be straining so much and it won't be so uncomfortable and she won't mind it as much.
Amelia's oxygen keeps creeping up. She is still at 2 LPM but she is around 85% and sometimes she has to be up as far as 100%. In the past they have pushed her liter flow up but they have left her at that rate for several days despite the high fiO2.
Despite this, she seems to remain in good spirits. We put her in her jumperoo yesterday. Her legs are so short they do not hit the floor so we have to stack a couple pillows under her. Her legs were bent a little and I pushed down on the top of her thighs to put pressure on her legs. After a while she started bouncing a bit on her own, so that was very exciting. She smiled a lot and giggled a bit. She started smacking and batting at the toys on the jumperoo and was having a grand old time.
We took her out to feed her. I got a few bites from her but nothing like the gusto she had right before her surgery. I don't think she is feeling as good as she was then.
Amelia had two visitors yesterday. Grandmom and Elizabeth. She sat very attentively while they talked to her. I just know there is a novel in her head waiting to come out. She has been collecting many stories and I know once she figures out how to write, she will have a best seller on her hands.
Amelia still does some retcing and coughing that reminds us of when she was refluxing. So the doctor has put her on prevacid. She thinks maybe some of the acid is rising up into her lower esophogus and is causing her to want to retch. I thought this was not supposed to happen at all any more because of the fundo, but now I am learning differently. She will take her off the prevacid by the end of the week if it doesn't show to make any difference.
They are repeating her echo this morning just to make sure the hypertension is still under control and is not the reason why she is requiring more oxygen. The doctor's current theory is that because we are now ordered to have Amelia sleep on her back (in preperation for her coming home) it is causing her fiO2 to go up. It is harder to breathe on your back than it is on the stomach. She said in the long run it is better for her to be able to breathe on her back as well as her stomach, even if it is delaying her going home.
The doctor has also put her back on one of her chronic diuretics to help increase her urine output.
I am starting to lose track of her meds, but since we are still down one diuretic and up an acid blocker -- we are still at 7 meds for her daily.
1 comment:
Dear T&C,
Hang in there, double your efforts on patience--it will all be worth it--you know it will. I am continually amazed with all that she has managed to accomplish despite all the road blocks. She was planned, loved into life, and she is trying hard at catching up. One day soon, had we not known her history, we might not even know of her roadblocks. She has always amazed us, and will continue to do so.
One day this will all seem like a dream; but it is how she came to be, how you loved her to health, found humor in the little absurdities, and above all know the true value of life. The Good Lord has his hand on all of us and has opened our eyes (some of us for the first time) to all that is possible.
Give her a snug hug from Grammy and tell her I love and miss her. I hope to see you all soon. Love MOM/Grammy
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