EPIC
Epic. A friend used the word today and it sounds right. Aside from a very traumatic car accident, I can’t imagine a scarier or more amazing surgery than DBS, and tomorrow this epic journey begins.
Today has been a good day. Not too much pain from Monday’s stitches and we got some of these lovely smiles!
Tomorrow morning at 7 AM we report in for DBS phase 1 and we are praying that it all will go super smoothly and they can combine DBS phase 2. This would make one recovery which would benefit Blue in many ways.
This is BIG in so many ways. Although we won’t see it right away (the thing won’t be turned on until later this month or in early September.) This is where the life changing miracle can happen. It depends upon the wonders of technology, surgical skill, the neurologist’s guidance, the ability to rouse Blue in and out of anesthesia, his ability to respond and indicate how the electrical stimulation is effecting him (yes he will be awake for part of the surgery – multiple times, and this prolongs the process depending on how easily they can wake him up and get info on how he feels and whether he can squeeze a hand, open a hand, etc), infection avoidance…many many things.
We will not be surprised if Blue is in surgery for 12 hours. It will be a long day and then will come the challenge of pain management. Because of Blue’s brain injury, most pain meds have adverse effects for him, tensing muscles and upsetting, etc. We pray we can find meds that can help control pain and ease his recovery.
After surgery, Blue is expected to be monitored in ICU for 12-24 hours. He is then expected to be in a regular room at Childrens for 1-2 days. Given his past with pain management these numbers may not be accurate, but the team at Children’s Mercy is very possibly more well versed in pain management for kernicterus than any in the world, so we will pray and we will see.
After Blue has been moved from ICU we will let you know about visitors.
Our girls are in good hands with my mom until Sunday. They worry and pray for their brother and are concerned about us all being in the hospital, but they are excited for their brother and some Mom-mom time too!
Beyond that we pray for nursing (we were just approved for this) will line up and that we can find the additional help we need. Next week we don’t have help lined up, but we know it can come together quickly…and we really don’t have much idea of what Blue will need.
My husband and I are holding up well (or maybe we are complete messes…and maybe it depends on the split second). We are hoping and working to make this all come together. He will be able to take a couple days off work. My health issues with my neck, knee and ankle are alright. I do have to be careful in managing stress as it triggers neck spasm very easily. My knee surgery can wait until Blue is well on his way to recovery. With my brace I could even put it off for a year or so, if needed. My surgery last month has healed well, I have no pain from that and it has helped in reducing neck spasms.
We very much appreciate all of the kind thoughts, prayers, and support poured out from dear friends and family near and far!!!!!
We are not safe. None of us. But we are loved by an awesome God and we very much look forward to seeing the benefits that this surgery can bring in healing our boy!!!!
a Rearranged Life 
Sending up prayers for Blue today and your whole family.