Surgery day - We made it!

What a crazy amazing day. We made it past the first hurdle! MJ’s surgery went well! My baby is finally resting and I am one tired mama and so I am going to give you the bullet point version:

Long term prognosis if we didn’t do surgery:
• Continued and irreversible neurological damage to the spinal cord including paralysis.

What they did in MJ’s surgery:
All of this was done with the goal of giving the cerebral tonsils more room, relieving compression/pressure, and restoring the flow of spinal fluid.
• Craniectomy – Removed a small portion of bone at the base of the skull.
• Laminectomy – Removed the bony “bridge” of the C1 vertebrae
• Duraplasty – Opened the lining of the brain (called the dura) and implant a synthetic patch.
• Shrink the cerebral tonsils – The portion of the brain that was compressed and previously lost function due to compression.

Blessings:
• MJ went to the hospital this morning with minimal anxiety and handled everything pre-op like a champ!
• Dr. Adelson with Barrow’s @ Phoenix Children’s and our surgery team– Amazing Amazing Amazing in so many ways!
• The volunteers at Phoenix Children’s Hospital – Wonderful!
• Child Life group whose sole purpose is to help the kids prepare (social stories), distraction, and fun time to keep their spirits up (when he is up for fun in a couple of days).
• Did I mention the awesome surgery team? – We got hourly updates via cell phone throughout the entire surgery!
• The surgery went well and as planned with no complications in the OR!
• Pain management – The ICU team is staying ahead of his pain and he is getting good pain management right now.
• MJ is getting good rest in between his episodes of nausea.
• The times MJ has woken up for very brief moments he is showing good signs of being more alert each time and showing his typical personality – EXTREMELY important when dealing with neurological issues!

Short term challenges:
• Reaction to the anesthesia and now brain swelling (normal) is causing MJ to get nauseous and throw up a lot.
• MJ has had his catheter out for quite a few hours and has not gone potty. If he doesn’t go soon (by midnight our time) they may have to re-insert a catheter.
• Neck strain – MJ’s muscles in his neck are very stiff from surgery and he is keeping it in one place too long while he is resting. He needs to move his neck more (back and forth on the pillow) or we will face bigger challenges and he will stay in ICU longer.
• MJ’s incision is bleeding a bit so they need to keep a close eye on it.

This week’s risks:
• Infection – Pray for no meningitis!
• CSF (cerebral spinal fluid) leak – If the CSF starts leaking out his skin/incision they will have to open him back up to stop the leak.

Longer term issues/risks:
• Scar tissue – if too much scar tissue builds up it can cause a new blockage and more surgery.
• If MJ’s syrinx (cyst) in his spine continues to get larger even after surgery he will need another surgery to place a shunt in to re-route the CSF.
• MJ will have less range of motion in his neck and could get pain so he will have to learn to avoid certain activities that may hyperextend his neck (ie: he will always have to sit in the back half of a classroom so he does not have to extend neck to see the board/front).

I just have to say in all of this God is so good. We have an amazing medical/surgical team for our little boy. We also had an amazing spiritual and prayer team of friends and family join us at the hospital today. And most of all thank you to each and every one of you who have been praying and are continuing to pray.

We still have a long road ahead – but God is good and He hears our prayers!!!