I knew when I got that E-mail things were not good. See anytime we have tests done, I have a rule with the Dr.'s if everything is normal, they just email me and tell me things are fine. If there is issues, then we speak with the Dr. himself.
When we went into the Dr.'s office and he walked in with an anatomy book about the spine, I knew we were in for it. Rhett does indeed have a Tethered Spinal Cord.
We will meet with the neurosurgery on the 12th of march at 9 am to discuss what will happen from here. It will probably mean back surgery where they go and snip the part of the cord that is attached. As he grows and develops it can cause neurological damage, so we want to correct it as soon as possible.
Never ever a dull moment here.
We also have done alot of thinking and researching, and I think we are going to try the UPPP before the trach. Our ped agrees that it will give us the best chance at trying to give him a normal airway. If he still has to be trached, then fine, we will deal with that when the time comes. I am feeling better about things.......for today anyways.
So far here is our agenda for surgeries in the next few months.
- Still go in for the upper GI on the 3rd, and meet with the general surgeon who will ultimately decide whether or not he will have a nissen done.
- Then we need to decide what needs to be done first............
- Heart Cath
- Or Spinal Surgery
Hopefully we will be able to combine some of them, although every time I talk to his cardiologist he seems to think it will be too much stress on his heart and lungs to do two of these major procedures at once.
He is even hesitant about doing a heart cath on him.
This is all just so incredibly overwhelming. Sigh.