Boston Children’s Day 2023.020

Saturday, May, 20th 2023

This will be a short post with much more details to come in the next couple of days. Richard’s surgery went very well. They had to be a little more aggressive then they planned but was well within the communicated range of possibilities that was discussed before. Also, thank God, the odds that this will mean a much improved quality of life in the for Richard in the long run are very high!

I have not posted much the last couple of days, as I have seen or experienced a more emotional or mentally draining environment then the helplessness of be a parent along for the ride of a kid in the ICU.

With that said, there is even a little guilt as even with Richard having spent close to 200 nights in an ICU bed and counting we have been blessed by being the “least critical kid” in the ICU and I thank God that we have never been like the families around us who kids are much more critical and I have also watched the neighbor lose a child several times. The guilt is that I thank God that we have never been even close to these concerns for this every moment. We have always just been talking about quality of life, not life itself.

Richard is both sedated and clinically paralyzed so that he does not swallow or move his neck to let the surgical sites heal a little before they get stressed/tension.

I thank God that he is a fighter and does a good job of fighting the medication (good thing). When I put my finger into his hand, his thumb grabs me and his toes do a little dance.

The staff here is taking good care of us and the end of this tunnel is in sight. If all keeps going well we will be leaving the hospital with a boy who has less barriers to eating food orally, his Respiratory system will be much more resilient to infections and likely off PN (IV food) by the time we leave.

Prayer Requests

• That he helps impressing papa and the staff with his fighting spirit and above all cuteness
• That the rest of the family’s emotional sanity keeps intact
• That Monday’s extubation goes well
• That we stay on course for discharge in the next 5 to 10 days

PS thanks again for putting up with the little information, Papa’s brain is mush…