I know I should be updating more frequently, but Mallorie's been "busy" lately. She has continued to have seizures, and when they happen, it can take a lot to stop them. Then she can be without for a couple of days, and there isn't really a pattern that anyone can see. Sometimes there will be a fever (like after she had an aspiration the other day), and that seems to explain seizures coming back. Wednesday evening she needed two doses of Ativan for seizures, and yesterday she looked to me like she would need it again, but settled down. She also had run a little bit of a fever last evening, and it was treated with Tylenol pretty quickly. There also was a fever early this morning, and by noon-ish she started having some dramatic seizures which required a few doses of different medications.
There were a few scary moments when it looked like she might not be breathing, and suddenly, out of nowhere, the attending doctor produced an oral airway and put it into Mallorie's mouth. It pulled her tongue forward and corrected whatever was obstructing her airway and causing her to have noisy breathing, prevented her from biting her tongue, which has been a problem with her recent seizures, and gave a better way to suction her mouth. I burst into tears when the situation was corrected, because I didn't have the right words to express to this doctor all that I felt about him being in the right place at the right moment. He's an exceptional teacher, to the residents, the nurses, and the parents, and we all learned something in that moment.
With all of Mallorie's changes, it is good to be in the hospital with her to learn what works in different situations, and I appreciate the input from the nurses. Today, just when I was getting frustrated at repetitive signs that looked like low-level seizure stuff to me, the nurse asked me if there was any chance it might be reflux. It was a lightbulb moment. I had realized a couple of times recently that sometimes what she is having could be seizures and sometimes it could be reflux, because a lot of the signs we are seeing can happen with both, such as putting out excessive saliva, arching, grimacing, stiffening. But I sort of get stuck in the moment, and when I see definite seizures, then it's hard for me to not see seizures when anything seizure-like is going on. Once she made me see that, I was able to relax, because I believed her seizures were in control.
Because of today, they have increased her Keppra dose, and one of the neurology doctors explained that Keppra is a medication they like because it doesn't cause liver problems or excessive sedation. There is a mom I know of a boy who has seizures which improved after surgery. I just remember her saying that when she was given the choice of which medication to keep last, as medications were weaned off, she chose Keppra. Also, Gavin's "miracle" seizure drug is Keppra, according to his mom. I was so happy to hear that she still has room to go up on that drug, and that's what they did again today, so she will be getting a higher dose of Keppra ongoing.
The neurologist who was covering last week (not Mallorie's own neurologist, the awesome Dr. Rivera) was in her PICU room one day and made the comment that he didn't think they would ever completely control Mallorie's seizures. I was grateful today for a change in doctors, because that attitude didn't settle well with me, although the doctor himself seems good and I have no complaints ... except about his negative attitude. :) Not only did I not believe that, but I also believe it's extremely premature to make statements like that about someone who only has had seizures for less than 2 months. But when you have a couple of days of contact with very positive doctors who do not act like they are "discouraged," it does wonders to boost your spirits, particularly when you've been up since 4 am and are feeling quite weepy. And it helps when Dr. Stein, the performer of the amazing oral-airway trick, says that on a scale of 0 to 10 in terms of concern that he has for Mallorie, with 10 the most severe concern, and 0 being no concern, he considers her to be about a 2, it is encouraging. He believes that what she has is manageable, and we just have to learn how to manage it. This was before Mallorie required the airway, and sure enough, even that scary event was managed.
Prayers that we need: For Mallorie to get the needed surgery on the right day for her. She needs to be in good health, but I believe she also will be in better health when this new severe reflux is made a non-issue for her. For healing for her brain and lungs. For our kids and John, who can't always be here, and all miss being together as a family. For healing for myself.
Oh, and I also forgot to mention that Cathy, Annabel's mommy, came by to see us a few days ago while we were in the PICU, and brought Annabel's beautiful hospital gowns and quilt for Mallorie to borrow while she is here. Let me tell you, when you dress this fashionably while you are in the hospital, you make quite a stir. Even male doctors have commented on how she looks, and at least a couple of the nursing staff recognized the gowns and talked quite a bit about Annabel, Cathy, Carly, Colette, and Tara. I will admit that it was nice to be able to say I was friends with Cathy. Sort of like saying you are related to the president of the US, because I swear people are jealous of me when I say that. :) Of course, it could be Annabel that they are all jealous of me for knowing, because she is quite a star here.
The Trisomy 18 Connection
1 month ago