Today seems to start off as a pretty calm day. The Neurologist comes in and talks about her MRI. He says that the MRI shows the stroke did not cover the entire brain like they had thought but it does show that the stroke is pretty hard hit in the middle of the brain. He does say that Mari is now back to where she was on Thursday. We are so happy to hear that. He says that it is completely a wait and see game with her. He also reiterates what they told us yesterday in that they are not sure how much of her brain stem became injured during the ordeal on Friday. They know that it has been but the MRI does not show it being injured. However, they can just tell by their exams of her. We are all very happy with this news.
Then the Nephrologist (kidney doctor) comes in to just confirm what we already suspected in that Mari’s kidneys have a very slim to no chance of ever working again. They need to do an ultra sound to see if there is still any blood flow to them to find out. If there is no more blood flow to her kidneys, she will have permanent loss of them. Until Mari’s neurological issues improve quite a bit she will not be a candidate for a kidney transplant. This makes sense of course in that there is no reason to give someone a kidney transplant if they are not responsive.
The Hematologist comes in and does not give us a straight answer as to whether she has HUS or TTP for sure. I think it is because they really do not know. She says that they are just going to continue with the course of action they are doing now since this is what seems to be working.
The starting of the day, Mari’s pulse is at about the 100’s which is very good. When the Attending PICU does her rounds she talks about and decides that they will try to start weaning Mari off the ventilator during the day. We are happy to hear that. So they first drop her from sixteen respirations per minute down to fourteen. What we start to notice as the day goes on is that her heart rate starts to level out in the 90s and then in the 80s. Later in the day they drop her down to twelve respirations per minute. Then you start to see her heart rate dropping down into the 70s, and finally into the 60s, with it sometimes even dropping into the 50s (which is really not good). Keith and I are getting pretty concerned. Since her respiration amount is the only thing that has changed, we concluded that she is not doing so well on the lower respirations. Eventually the doctors feel the same way and they put her back up to sixteen respirations per minute. Her heart rate seems to go back up with the fast breaths. We are happy. They keep her like that for the rest of the night.
Now Mari’s tongue has become pretty bad at this point. In fact, her nurse says that in the last 5 years she has worked here she has never seen a tongue like this before. They have to bring in a dentist to try to get a bite block in because Mari is biting down so hard on her tongue that it just keeps getting bigger and bigger and more and more discolored. It just looks like it hurts.
The dentist puts in this metal contraption in her mouth that now keeps her mouth open so she cannot bite down on her tongue anymore. We are so happy this has happened. The Attending PICU was actually talking about removing her teeth if they could not do something about it.
A close personal friend, Faith Miller, decides to come in from DeKalb and stay the night so she can visit with Mari and us. She is very close to Mari. She used to help me take care of her all the time. She has stayed at my house and gone on a trip with us before. Mari is like a sister to her at least if not like a daughter. She just loves her so much and was so excited when I invited her to stay the night. She and I stay at the Ronald McDonald House together. I have a decent night’s sleep. I only wake up once and then wake up right around 8am.