Yesterday, we thought we were going home, and packed. We still have the cart in the room! But Mallorie continued to have agitation and had spiked a fever in the night, and even Ativan hadn't had an effect more than 2 hours after it was given. There was a concern of new infection, and always in the back of the doctors' minds was the PIC (IV) line which had been removed in preparation for discharge. So the discharge was cancelled, to watch how her day progressed, and a new medication was tried, instead of Ativan, because 2 hours after the Ativan had been given through Mal's feeding tube, she was still very agitated and arching off the bed surface.
The periods of agitation are accompanied by higher blood pressures, heart rate, and temperatures, but they turn out to be very responsive to Clonazepam. This medication was much more effective in calming her, and seems to work more quickly, and lasts longer. That is a relief, because we know we will have a 2 hour drive home, minimum, and in the past, sometimes breathing difficulties have accompanied the agitation. I very much wanted to go home, but did not need any convincing about slowing things down when I thought about a 2 hour drive without oxygen in the car. She hasn't been needing oxygen ... I had woken up at about 5 or 6 a.m. yesterday morning, thinking about how she was still on oxygen and we didn't have any with us for the trip home, that when it came time to go, she might have to be trialed on room air, first. So we turned the oxygen mist off and learned she could go all day with no issues maintaining good oxygen saturations on room air.
So yesterday, after receiving Clonazepam, there was no more fever. After just over 8 hours, Mallorie woke up (2:30 am) and was becoming periodically restless, and over the next few hours, she ran just a low-grade fever, her blood pressures went up somewhat (she is already on 2 blood pressure meds) ... but then she calmed down again, even though she didn't go to sleep, and the "fever" went away and the blood pressure came down. That was without any additional medication. At 8 in the morning, the agitation increased, and she was given another dose ... and she has been snoozing peacefully since.
Most of the people here do not think this is seizure activity that she is still having, but more likely a sign of her brain "waking up." For sure, her body's response to this agitation ... or else the agitation itself ... is much less dramatic than it had been in the PICU. Maybe this is because they do not let her go hours in an agitated state, while treating just the blood pressures and doing bloodwork when she has fever. Instead, they treat her obvious agitation more quickly, and so maybe it just doesn't get as bad? Or maybe it is just that she is getting better, day by day, and so her periods of agitation are simply less severe. Either way, this sweet girl is resting (she had been given the new med 2 hours before this picture), and we are officially going home.
WE LOVE THIS NEUROLOGIST (Dr. Rivera) who will continue to see Mallorie after discharge. He very clearly loves children, and I do not feel I have to be careful of the way I am asking questions (like starting always with, "I am not saying that I think this could be seizures, but ..."). Instead, he is patient with what probably sounds like I am asking the same questions over and over, but as different things occur to me, I need another explanation of what HE thinks is going on. He listens very patiently, and though I know he is a very busy man, John and I said he has a way that makes you feel that Mallorie is the only one he has come to see on the floor. He was clearly chosen for us. I know at this point, I cannot have another doctor that it feels I need to wrestle with. In fact, he offered this morning to email Mal's Physical Medicine and Rehab doctor to ask her if a Hensinger collar might be helpful for Mallorie, since there are some concerns about the neck region of her spine, and Mallorie cannot support her head on her own. I get the feeling he pretty much knows everyone in this big place, and has a good relationship with them all.
So we're packing, because yesterday all the discharge prescriptions had been faxed to our home pharmacy, Dr. B had been called by the resident, and the milk had been moved from the milk bank freezer to this floor's freezer. Andn we will bring our sweet baby home to the arms and kisses of her brothers and sisters. And Tracy.
I am praying today for Witt, who is still in the PICU here and is still in need of healing. And for Rolando, who has been in the PICU for a month, running fevers continuously despite antibiotics. Mom told me yesterday that they believe the source of infection was his central IV line. I am praying that with that IV now out, his body can respond to the medications, and that he will recover fully and return home with his family. He is an 18 year old miracle, a former premie, and apparently a source of joy to those who know him. I only wish there was always a way to allow others to see who our children "are" when they are not sick. So many times we have been asked if Mallorie is back to her "baseline." Thanks to Mal's speech therapist, we have a blanket displaying Mallorie sticking out her tongue at John, or grinning ear to ear, and fold it at the bottom of her bed so anyone who comes in can see one of the pictures. (To John's delight, it also has pictures of the other kids, so anyone who comes in the room when he is here gets to see the pictures of all his brood.) :) This hospitalization was not planned at all, but I know some people bring photos of their child when they have hospitalizations. I think expecially for children with special needs, this is a blessing, if doctors, nurses, and respiratory therapists can see who your child is when he or she is not sedated or very sick, and the personality can show through. I can't count the times when residents have told us how good it was to see a visual, so they know who they are caring for. She is a much-loved part of a family, and a child full of joy. They might not get to know her when she has fully recovered, but they have gotten a glimpse.
**I'll post the picture later ... because WE ARE PACKING UP!!**
The Trisomy 18 Connection
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