Day 8 update: Unbelievable God stories coming out of CHOP this Monday!
Dr Kennedy reports that Matthew is possibly the quickest recovery of this surgery that he has ever had! Just to make sure he was not missing anything, he ordered a CT scan of head. The results: No swelling in his ventricles nor does he need a shunt revision! Pre-op he was 98% convinced he would have both of these issues.😊
Staff are scrambling to get paperwork completed and insurance approval so that he can be moved into in-patient rehab. They never expected this next step would happen this soon! Maybe Matthew and I will make this move tomorrow!
On another note, the neurologist that is covering Matthew this week is the same one we had when Kari was first admitted here 34 yrs ago here. Today he was here with a team of nine to see Matthew. I mentioned to him that Kari was his patient and off we went into an incredible conversation about all that is happening with her. He was astounded and said he had never even heard of a RARS2 mutation (Kari’s diagnosis). He suddenly remembered that he was here to follow Matthew’s progress.
As Dr. Clancy put his focus on Matthew’s status, he was also astounded with that and said to his team, “Something amazing is going on in this household.” I believe if everyone wasn’t wearing a mask, I would have seen some mouths gaping. We all know that “something” is the strength of my Lord and His peoples’ prayers!’
Note from Ron: Joan told me this morning that Dr. Kennedy kept saying, “I can’t believe how well he is doing. All weekend I expected to be called to learn of some setback. It hardly seems possible that things are going this well.”
Just to help you understand what is so amazing about all of this: We fully expected Matthew to be in the ICU for another week! We were never told that his stay in the ICU could be shorter (never told it because it rarely happens), only that his time in rehab might not be as long as expected. Also, in every area he is doing better than expected (speech, mobility, use of his right side, etc.)
Joan also told me the story of Matthew is spreading in this hospital. This is the place that saved his life 8 years ago. Understand that when he left here then it was with the belief that he would never walk, talk or sit without support. It is extremely rewarding to them to see such amazing, unexpected fruit come out of their labor. The last time they saved his life. This time they have the opportunity to dramatically improve the quality of his life.