Matthew and I are still hanging out in the ICU. He continues to be on an external intracranial drain which comes out of the top of his head. It also measures the pressure within the cranium. This very much limits his positioning and movement in bed and is the reason he is in ICU.
I can still report that all is progressing, and we have had no setbacks in last 18 hrs. He has every- hour neuro checks which are impossible to sleep through, but the bigger deal is that he is passing each one and his paralysis on right side (which was totally expected) is improving each hour as well. Physical and Occupational therapy begin within the hour.
Emotionally: Matthew is a trooper and my superhero! He is extremely compliant and oh so sweet. Every nurse loves him. His voice is still a whisper and he still is wiped out by activities such as eating and neuro checks. He gets to face time his dad for about 3 min each day and today Ron gave him a tour of our kitchen and his toy shelf. Now Matthew wants to go home. I am not so much ready for that – seems like we still need a few things accomplished😊.
He will smile on command, but nothing makes him smile naturally yet. When he is awake his eyes follow me everywhere and he still wants me holding his hand. I wonder how long that will last. Once that independent nature returns, I am sure it won’t be cool to have mom holding his hand😥
Spiritually: God is sustaining us both in this spiritual desert. Our “window view” only allows us to be spectators of CHOP’s air-conditioning units, which are massive I may add, but not so inspirational! And we can see a very small sliver of sky – cloudy today. Feels a bit prison-like, but with God on His throne, you all hounding heaven with your prayers on our behalf, and Jesus’ presence in our room we are hanging in there and very hopeful that “lockdown status” won’t last forever! God is good!
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Jeremy sent this image to Joan, thinking that she might resonate with it. She did! She said, “I know enough about chess to realize the knight isn’t going anywhere – very appropriate.”
On the home front, just want to say that the ladies (Mom and Kari) are making life very easy on me. No “events” from mom and no seizures from Kari – just the way I love it. I am certain that many of you are upholding this side of the equation through your prayers and both Joan and I appreciate it.