Lilly is sleeping at the moment with one arm thrown up high overhead and her hand in a fist. All I can think of is "raise your fist and yell!" I'm taking pictures while here and will load those and post them when I get home.
Lilly is doing well right now. Her eyes looked normal this morning and she acted like "regular Lilly." They turned her oxygen down to 4 liters this morning. (It had been at 5 liters all yesterday.)
Late yesterday afternoon Lilly got really fussy. I was trying really hard not to feel panicky when she kept setting her alarms off. (There are definite battles between logic and emotions going on in me. The logical part was talking sense but the emotional part got so tense that I thought I'd throw up.) Finally the nurse figured out the problem. Lilly was hungry! Of course! It was so simple I wanted to cry with relief. Lilly had been off feeds since 1:30 a.m. (As a precaution for extubating her. Pulling out the breathing tube makes one gag and they didn't want her throwing up and then possibly aspirating.) Lilly does NOT like being hungry! She is used to a full belly. So the nurse got clearance to start Lilly on Pedialyte. (To be sure she tolerated that then go back to breastmilk. Which she did at midnight.) Lilly settled down really fast and was quite content until bedtime.
At bedtime she was very very restless and got increasingly agitated. Tylenol didn't help take the edge off. So finally after an hour of being unable to soothe her I agreed to let the nurse give her a small dose of morphine. (Ugh! I hate my biddy baby on all these drugs!) Of course that that did the trick and Lilly slept until morning.
Lilly's congestion in her chest is breaking up and she's getting some nasty looking stuff out. Her temperature is remaining normal. Lord willing the virus has about run it's course. The doctor is still unsure about her and wants to continue moving very slowly with her. (We may be here another week.) Though as he turned to leave the room this morning he said in an almost surprised voice, "she really is a strong one!" (That was very satisfying to hear!)
I had a long talk with Lilly's cardiologist today. It seems every time I think I get something straightened out in my mind, I find out that I really don't. (How dense can I be??) Dr. R, Lilly's cardiologist, probably wonders where my brain is as he patiently discusses the same things with me over and over. I guess I can only understand bits as we go and as we're confronted with different situations. First Dr. R emphasized that Lilly's heart function is back to normal and it really is quite good (when functioning normally). So from his viewpoint, her heart is not "wearing out." The pulmonary artery band, which still fits perfectly, is doing a great job. Because it is working right, it is handling what a closed VSD would do. So in his eyes, because she has the band, closing the VSD won't really make much difference in Lilly's overall health. Meaning just because her VSD is closed, it won't protect her from viruses and germs any more than the band is doing now. Hmmmm. Not what I was thinking. (I want to talk to the surgeon in S.C. too but if he agrees with this then that could change our surgery plan.) Dr. R says that when Lilly stops breathing, that that is probably from a problem in her brain. (We do know that Lilly is very developmentally delayed in her brain. So I wouldn't be surprised if she had all sorts of brain signal problems.) Finally, we discussed again the problem of her left ventricular hypertrophy. He was very pleased to see that in her last echo from the other day that there had been no further thickening! (Thank you prayer warriors!) If it does continue to thicken, then Lilly will most likely have a heartattack when it gets really bad.
Deep sigh. So many things to think through and enormous decisions to make. When I look at Lilly lying in her bed here I just want to be able to pick her up and hug her and make everything OK. But only God can do that. I hear so many opinions from doctors and parents in our situation and nurses with what they've observed but none of them really know what's best for Lilly. If only God had given me the printed version of that book - Guide for the Proper Care of Lillian Eva.
Speaking of picking up Lilly, tomorrow it will have been a week since she's been held. That alone seems unhealthy!
As an aside for people that know our family situation - so many are curious as to what our arrangement is with Lilly in the hospital. Our other two children are at my mom's. I haven't left the hospital since we got here last Saturday. My husband has been going to work each day and then coming back here to stay the night. (He said he hoped no one noticed that he wore the same clothes to work several days in a row.) Mom is getting ready to go out of town so my aunt from Florida is flying in to help.
L.G., mama of Emily (a 5 year old with Trisomy 18) e-mailed me something the other day that keeps running through my mind: when fear knocks - faith answers. Today I read a quote by Oswald Chambers: "Faith by its very nature must be tried." OK - so faith is like exercising. I think I've had enough of a workout for awhile! :)
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." - James 1:2-4
It is fairly easy I believe, to sort out the issue with the cause of the Lilly's breathing issues bu doing a sleep study. Especially by this age, it would seem more like to be obstructive apnea. There are many parents on facebook who have been through these issues and there is a wealth of wisdom and experience for the asking. In fact, I would not at all be surprised that the collective group of parents know more about these conditions than the doctors, given the rarity.
ReplyDeleteTo Anonymous, this is Lilly's G-Aunt Shisshy on my way to take over the reins of caring for Lilly's siblings. FYI, Lilly did have 2 Sleep Studies. There was no obstruction found. I think the details may be in an post from last week when she had the Bronchioscope. sp? Evidently, this is quite common in T-18 babies. We have a pretty good network through Facebook. Just haven't been able to get Lilly's mom on yet, so we have been doing it for her. Thanks for your input. You are right. These parents who have been through this are a wealth of knowledge, compassion, and encouragement.
ReplyDeleteI'm coming T and H...........................