The PIC line has been postponed until tomorrow morning.
The MRI of Mallorie's brain was done yesterday, and the neurology team isn't sure what to make of the report. There is some change from the MRI she had done in the NICU - 3 years ago, to the exact day - on the right side of her brain, only. But they don't know what the change could be from. Infection doesn't seem the most likely, as she's had testing on her shunt and fluid taken from the shunt twice already, and nothing looked like infection. Or blockage. So they don't know. I think he said that if anything, the ventricle(s) looked smaller, which would not be expected with some sort of infection or inflammation going on. And if this is all just words to you, join the club. Repeating the stuff I hear doesn't mean it's all registering as English to me.
So the radiologist's recommendation was to repeat the MRI in a week or so, and the neurologist who came in this morning said they will discuss that as a team. It could be influencing Mallorie having seizures and having trouble with the tube coming out.
But there is the question of the caffeine level, too. There was a time in the past few days when Mallorie was breathing too fast, and this altered the blood tests that monitored her respiratory situation. One doctor's theory was a too high caffeine level, and yesterday's verbal report that the nurse got from the outside lab was that it was too high. Which would possibly make sense of that part of the picture.
But today, no one can find that level (report) in the lab to fax here. My theory is that a lab result that doesn't show up for over a week can be a lost specimen. But the caffeine discussion brought up a point for the future. We know, from having her levels get really low last year, that she still needs caffeine to manage her apnea. It works, and when the level is too low, she will have apnea (just stop breathing from time to time), and if the level is really low ... like a "2" as it was last year, . But they said that there is hope she will eventually outgrow the apnea. That a wean should be attempted at some point. I was alarmed, because I thought this was expected to be done now, but the fellow I was talking with said it was something that might happen over 2-3 years. And that Dr. B could do that. Oh, OK. So that I can live with, because one of the things I know for a fact about Dr. B, is she is not about to compromise a child just to test a point. She would be the one I'd most want to manage something so important, and I'd trust her instincts as well as know that she'd listen to John's and my feedback about apnea. Whew. Here, the plan is to just cut back the doses a certain percent, and presumably, they'd retest the level.
And maybe they could draw a new level before cutting back, in light of the specimen/results that they can't locate in that far-away lab. :) Just kidding. I promise you, they aren't all asking me for my input.
I can't wait till John is able to come out tomorrow. It is so much better being here with someone, and who better than my beloved, who adores this little girl as much as I do, and who gives her blessings whenever he can. You should have seen me trying to remember the blessing he gives all the kids, to say it over Mallorie before her MRI yesterday. I think it came out, May the Lord bless you and keep you; may He bless you and keep you, may He bless you and keep you, and give you his peace. Last night I had to sing the Michael Card version to her in order to get any of it straight. Better hurry up and get here, daddy.
The Trisomy 18 Connection
1 month ago