Surgery to release the tethered cord is scheduled for June 15th. Cameron will need to lay flat for at least 48 hours post surgery. This will no doubt prove to be rather difficult given his squirmy ways. The nuerosurgeon mentioned a mom recently spent much of her time wheeling her son up and down the halls of the hospital in wagon to keep him happy - guess I better get my walking shoes ready.
Dr. Bowman will perform the surgery and she was very good with Cameron and answered all of our questions. There is chance the cord could retether after surgery but it's a small percentage. We went through the risks and we are ready to move forward. There are no guarantees this surgery will resolve the issues we are seeing in terms of Cameron's lower extremities but to not move forward with the surgery would be determimental to him.
Which leads to the findings from the CMG (urodynamics study). I spoke with the urologist and her exacts words were "Cameron has incredibly high voiding pressures" - There is no harm to his single kidney so far, but because he only has one kidney we have to keep a very close eye on this situation. Once the surgeon gets into this spinal cord she'll be able to better tell us the severity of the tethering which would possibly help us to determine if any long term damage to the bladder has been done. 3 months post-op we will have another CMG done to see if the pressures have gone down. That is the ideal scenario. If the CMG in 3 months still shows problems Cameron will likely be put on medication to try and relax the bladder, and we may have to learn how to catheterize Cameron.
Worst case scenario would be surgical intervention to repair the bladder. Much of this we won't know until we see his overall response to the surgery, and when he gets a little older and we try to potty train him. We have to also keep a close eye on any urinary tract infections.
We then did some lab work and headed over to the main hospital for the chest x ray and Dr. Reynolds. Good news the x-ray shows no significant change. As Dr. Reynolds said we have enough to worry about right now and told us to get out of there. If he shows signs of breathing issues we're to come in sooner otherwise we'll see her in year for another x-ray.
This was very good news, one surgery is enough for this summer. We see nehprology and the pediatrician next week and then we will prepare for June 15th.
Here are some more bday photos to enjoy...
3 comments:
As always you are all in my prayers. I just feel our little "miracle" will continue to WOW and amaze the medical field...try to get some rest...although I read the blog from the birthday - he's only slept 5 x through the night!?! Reminds me of when Josh was a baby, he didn't sleep through the night until he was 11 months old! Let me know if you need anything - even if it's just to sit at the hospital while you two get some dinner. Saturday was such a joyous time! The service was wonderful and Cameron stoled the show! It is simply amazing that a year has passed - how big our guy has grown...how much love he has in his heart, you can see it in his eyes and that contagious smile :) Love you, GABY
happy birthday little guy. i cannot say this again and again but this kid is a trooper. he looks so amazing and happy and cute in every photo. it's stunning. and to think he must endure what he does; he will be a remarkable adult. that is for sure. and his parents...well, i just cannot say enough. you guys leave me speechless. your souls are gold. xx hang in there. im on the pray playground + know everything will be on track (although throwing curves out the wha-zoo) soonest. xx donnelly.
sweet pants
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