Almost 7 years ago …

On July 7, 2015, it will be 7 years since my grandson choked on a grape while at his daycare.  That changed the lives of Judea and everyone around him forever. Hard to believe that 7 years have gone by, even as I think about all of the changes and hospitalizations and surgeries that have taken place in that time.

I decided to start this blog to help other parents and/or grandparents (or other family members) learn something about: faith, fear, loss, grief, hope, experience, strength, and so much more. Our road has not been straight – we have had to maneuver unexpected curves in the road. I have been a backup caregiver for my grandson since the day of his incident.

As I write this today, Judea is 8-1/2 years old.  He has been in Children’s Hospital since last Tuesday when he had to undergo surgery on his right hip and thigh bone. I expected him home today, but haven’t heard from dad yet about the current status and plans to be released and come home. Surgeries in a complex care, medically fragile child never go quite as planned, and surprises can be expected.

Right now from what I’ve been told, the medical teams are trying to stabilize Judea’s insulin levels (he developed Type 1 diabetes several years ago); they are trying to stabilize his ability to accept his feeds through his G-tube (he developed Cyclic Vomiting within the past year). And I think the team is still working to best adjust the half body cast which extends from his waist down under his feet, with a bar in between the legs to keep them separated and the hip bone in its new placement.

Dad told me the cast adds about 40 pounds to Judea’s weight, and he is now about 60 pounds and about 4′ tall.  This also means we have to factor in how to get Judea home comfortably, how to get him around in our one-bedroom apartment, how to keep him entertained for 6 weeks of recovery in cast, how to keep his cast clean from bodily excretions, and how to work with Judea’s body to position him such that if/when he throws up, he won’t aspirate.

So, as you can tell just from this brief initial post, there’s lots to write about on each of these medical issues which have resulted from swallowing one little grape. I plan to write about all of this in hopes that the information will help prepare you, and will help give you hope for the brighter days ahead if your child has survived an incident with severe permanent brain injury.

Please check back regularly – I’ll be here, and I will at some point try to answer questions you may have and provide resources if you are just starting down this road of recovery with your child who has survived irreversible brain trauma.

Peace and Love.