Cardinal Glennon

Oh how we love the insurance game. Upon arriving at Children's we learned that we were out of network and would have to change hospitals...they did give us 5 days, so generous! So, on Wednesday Drake got to have his second ambulance ride in one week and was transported about 5 miles away to Cardinal Glennon Children's Hospital. Poor guy had to get a new IV, which took 4 tries and one of them swelling up is hand, and a new feeding tube. It wasn't a fun night for him and I was mad at the politics of it all.
As far as Drake's status....
He is opening his eyes a lot more and will nod his head for yes and grunt for no. He started physical therapy yesterday. He really has very little control over his body, but we are seeing small improvements. He did raise his hand on his own last night and that encouraged me. He had another EEG taken yesterday and it showed a slight improvement in brain activity, but still not normal.
He got to ride in a wheel chair and said he liked sitting in it. I am sure it is great to leave his bed for a bit.
We are now off of the IV, but the hook up remains in his hand, and all meds are going through his feeding tube.
Our next big move will be to a Rehab center sometime next week to start more intensive rehab.
The love and support we have received from everyone is overwhelming and so appreciated. The meals, gifts, chores, watching children, visits, prayers, texts, phone calls, and emails are what is helping us get through this. I can't say thanks enough!!!!

Children's Hospital

Drake has now been in the PICU since 4am Sunday morning. He was throwing up last Friday, but nothing that seemed anything more than a stomach bug. By that night he he was really tired snd slept a lot...nothing out of the ordinary. Saturday he woke up upset around 9, so i gave him some juice and he went back to sleep for another 3 hrs. When he awoke he was crying a little and very lethargic. At about 2 Dan put him in his car seat and he couldn't hold his head up and then he threw up again. Dan was worried and had me take him to the children's er, as he needed to take Kohl and Brynn to thier bball games. I didn't realize that we would end up admitted to the hospital and in this condition. Drake hasn't said a word since asking to watch a show on Friday night...he is in a very lethargic, mostly unresponsive state. He will open his eyes if I ask him too but that is about it. I know he is in there somewhere....
They had a hard time figuring out what was going on since every test they took, and there were several, was coming back negetive....no fever, CT scan, blood, spinal tap, EKG, X-rays, EEG stool...you name it. It was his MRI that confirmed that he had ADEM...a type of encepholitids or swelling of the brain. We found that out on Monday and I felt better just knowing what was going on. He was put on steriods to see if that could help, haven't seen much of a difference yet, but that is normal. He seems more agitated and kicks his legs around a lot. He has some episodes where his arm starts to tremble and the drs. Are trying to decide if these are siezures or not. To be safe they started him on an anti-seizure medine.
This can be a somwhat long recovery, just have to wait and see what happens. I am guessing another week here at Children's...but really don't know. The good news is that most kids with his condition are fine and back to normal eithout any lasting side effects.