I left the camera in Mallorie's room, and am currently in the waiting room, but I should be posting some pictures. Maybe tomorrow, when all my stuff AND my child are in the same room at the same time.
Today Mallorie began the day with some of the stiffness/arching that she was doing before, and keeping her head turned to one side. Whenever I ask about it, the doctors say they don't think it's seizures. But no one has done an EEG when it's been going on, and even if it isn't seizures, I absolutely feel it's something to do with what's going on in her brain. She looks very uncomfortable while this is going on, her heartrate is high, and her blood pressure is high (180/100+) even though she is already on 2 medications for her blood pressure. Today, I asked again about possibly treating the agitation with some Ativan before treating just the blood pressure. I started with saying, "I know no one thinks this is seizures, and I'm not saying I think it is a seizure, but ...." and the doctor said, "It could be seizures. And if it is, it is very important to treat it."
Wow. Some of the other doctors have said that if they give her Ativan to calm her and stop whatever this is, it could make her stop breathing. Personally, when she is doing all of this, and it's making it hard enough for her to breathe that they are talking about putting a tube back in, as has happened when she did this before, I'd wonder what the risk is. If she stops breathing ... they were already planning to put a tube in, right? But only 2 doctors so far have agreed that Ativan should NOT be a problem for her breathing, and one of them (a neurology resident) also said it should not cause problems if they had another EEG done right afterward, because Ativan would not mask the seizures the way adding more seizure medication would. But even if another doctor agrees it could be a good treatment plan for her, that does NOT mean the doctor who is in charge at the time when this stuff is going on will agree with the plan.
But today, Dr. N looked at her and at her vital signs, and said to give her Ativan, and not another blood pressure medication. He told me that her elevated pulse and blood pressure could absolutely be from seizure activity. And within minutes, she calmed down, her breathing became easy and quiet, and she slept peacefully all day. When it came time for the MRI she was scheduled for at 4 pm, she was still so relaxed that they did NOT have to put a tube in at all (much better for her), and just gave a little bit of medication in her IV. She continued to breathe with no problems afterward, and I just gave her a bath, and I know she will have a good night. She is requiring some oxygen still, but it's being given "blow-by" as we do at home when she is sick, ... and with extra moisture to keep her airway from drying out. No mask or anything.
And the caffeine level that was repeated before any changes had been made in her doses showed a level of "5." The first one, which I really believed had been lost in Utah, somehow, because it was well over a week before someone could find it to give a verbal report .. and then no one could find it to send a fax the next day .... had been 24. I never believed that level, but since it was over the desired range of 10-20, I did feel much better getting confirmation. The really neat side effect of having that first report was that they lowered her dosage a little. This is as safe of a place as any to attempt lowering her dose, because I sure wasn't interested in trying it. Last time it got really low (to a "2") last winter, she was having really frequent episodes of apnea. But now, on a lower dose (I think 25% lower), she still does not have ANY apnea.
So 2 really good things learned today. That Ativan can help if she continues to have episodes of the breathing struggles associated with signs of agitation (high pulse and blood pressure). And that she can tolerate a slightly lower caffeine dose without apnea.
And Mallorie continues to breathe without any artificial support. :)
I have an appointment for myself tomorrow morning, just down the street, so Hannah will come to stay with Mallorie. I've asked them to hold off sending her to the other unit till I get back, but I fully expect Mal to be out of the PICU tomorrow. Yay! Not meaning it's not a wonderful place. Mallorie has received good care, and I've grown while here. But yay!
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