Mallorie remained relaxed all night, and her nurse was successful in advocating for "another hour" to allow the new blood pressure medication patch to stay on. For Jennifer (her nurse), this meant extra work, rechecking, rechecking ... I tried several times, both legs and the arm without the IV, and eventually gave up and went out to sleep. I fully expected this morning to find her patch gone, but I peeked under the covers on her back, and it was still there!
I know it's not just the patch, because God allowed Mallorie a blissful day of rest yesterday. The morning did NOT start out that way, and there was talk of reinserting the tube in her throat, and her milk feeding was stopped for that purpose (so she had less risk of aspirating on whatever was in her tummy if they had to put the tube in). But I was able to send out SEVERAL texts, asking for prayer, and very quickly things just turned around. Kate, her nurse yesterday, who took care of Mallorie several times when we were here 2 years ago, suggested I get in the bed with her (she's still in her big girl bed) and very, very quickly she fell asleep. Hannah spent a long time in bed holding Mallorie, and then we just put her in the bed alone, to see if she would remain calm, and she did, nearly all day. And through the night.
John bought her a white noise & music player from Bed Bath and Beyond, and I just turned it off, because maybe daytime is for waking up?? :) But we'll allow her to do whatever she needs, because she sure had an extended period of being wide awake and unable to relax. Days.
She will have another MRI of her brain tomorrow sometime, because there was something abnormal seen last week, that they couldn't quite make sense of. Then, at some point after she recovers from the anesthesia they give her (and possibly having a tube in again for the procedure), they plan to transfer her to another floor with a slightly lower level of monitoring. And a private room, I believe. (We've had 3 in a 2-bed room for the past few days, now.) Because Mallorie is normally monitored at home for apnea with a pulse oximeter, and because she's been so unpredictable this stay, it won't be just a "regular" floor, so that's a good thing.
Tomorrow is the day the residents in the hospital move to another area of training, according to the resident who has had Mallorie her entire time here, so she may be watched another day in the PICU after the MRI, just to be sure she remains stable. But I see us moving soon, and that will mean no wondering if there will be an available and not-broken recliner each night, no trying to sleep on the floor when there isn't, like last night (only to be woken after a little time to tell me there is no floor-sleeping allowed). I am looking forward to the PCU! Plus, Conchita is there, a sweet nurse who cared for Mallorie in a couple of her past hospitalizations, and who we learned actually lives in the same town that we do. It will be like going home. Almost.
And now, since Mallorie still feels like snoozing, I'm going out to get myself some cocoa. And maybe some sunshine and fresh air.
The Trisomy 18 Connection
1 month ago