After at CT scan, 20 hour EEG, MRI, and Spinal all while under sedation and on the ventilator for 41 hours to protect her lungs we finally have a diagnosis. Viral Meningitis. The next uphill battle begins...
After being ex-tubated today Maddy was very upset and easily agitated. No matter how many times I explained the situation she could not understand why she was in ICU again. I now see that this is because of the viral meningitis as well as a side effect of the anti-seizure medication they have her on. She has spent the entire day looking around the room saying how confused she is and crying. She knows who she is, where she is, what year it is and all the other questions you ask a person to make sure they are all there. She just can’t seem to realize that she is not dreaming. Every since she was in the ICU and ex-tubated after the second surgery she has been complaining of dreams that were too real. She would wake up in the middle of a dream right into another one, and then do it again. It was to the point where she would wake up and ask us if this was real life or a dream. We chalked it off to side effects of the medications she was on. Then she started having migraine headaches, they treated them with pain meds and finally immetrex but by July 4th her little brain finally gave a cry for help we could not blame on side effects, seizures. I am guessing the viral meningitis has been effecting her for some time now. The Neurologist asked about her rash, the one that is all over her chest, back and face, and said that could be an indicator of the viral meningitis. The problem is it’s also an indicator of lots of other things, see previous blogs.
Anyway we are very happy to have a diagnosis to point the finger at. The anti viral meds the doctor has Maddy on will help the infection clear up. I am guessing it’s in the final days any way given her symptoms and what I have read about it on the internet. Maddy is afraid to be alone at all any more, and who can blame her, so I have taken the rest of the week off. Natalie, Melissa and I will take turns hanging out with her around the clock. Today she would not let me leave the room even with Natalie or Melissa there. I finally talked her into letting me eat lunch at 2:00 and come to work for a minute to load music at 5:30. Poor kid!
Like I said today she spent the whole day confused and crying. However even in the middle of all the confusion in her viral brain she was still able to get up and move around the room a little. They had her catheterized again and were able to get that taken out. They had placed a new feeding tube in her nose and she was able to eat solid food so she could get that out. She sat up in her recliner chair for three or four hours. Everyone is very happy with the hard work she is doing to make up the ground she lost being intubated again. Dr. Rolf said if she did all that stuff he would move her back up to the regular floor tomorrow. That was a little comfort to her. But she would rather he just let her go home! Poor kiddo.
I don’t know how much I will be able to update while she is recovering from this round. Especially since she won’t let me leave her side. So don’t expect any news unless something else weird happens. Thanks again for all the prayers!
PEACE!
Carryover;
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