Cannon was in GREAT spirits this morning. He ate up until the last possible minute the night before (Fritos, Doritoes and a bag of M&Ms at 10:59pm before the 11pm deadline) and some water. He slept great and that probably contributed to his good mood. We arrived at the hospital at 9am for tests. Then he had his "giggle juice" (aka Valium) -- which seemed to work within 5 minutes... here's a quick video to show you.
http://instagram.com/p/luwcAmBSP7/#
Surgery started at around noon and was supposed to last 90 minutes. The nurse came out to inform us he went to sleep easily and that his vital signs were good. However, at the 90 minute mark, the nurse came out and said it would be another 90 minutes.
There was an important variable in his surgery -- Cannon had a syrinx -- or a pocket of cerebral spinal fluid -- that was clearly visible on the MRI. This photo below (while not Cannon) reminds me of what Cannon's MRI looked like. In the Before picture, there is a white sryinx which is a fluid-filled neurological cavity within the spinal cord that shows that the fluid is not flowing down his spine normally. This is why they wanted to do the decompression surgery, to relieve this pressure and help the fluid start to flow regularly again.
There are two ways to relieve the pressure. The first way is a craniectomy is to remove the bone causing it (in this case - the base of the skull has tonsils that can become malformed and put pressure on his spinal column). Sometimes this works alone -- and the removal of the bone allows the fluid to start flowing freely. Other times it can take a bit more to relieve the pressure, and doctors will have to open up the dura, or the thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord.
With Cannon's case, there was a slight complication. Once the surgery began, doctors realized that the elevated pressure had caused Cannon's anatomy to change - and hair sized veins were the size of fingers which forced things around a bit so that normal veins and arteries were not where they normally should be. The enlarged veins were also troublesome because if not handled well, he could have lost a lot of blood. The pediatric neurosurgeon that conducted the surgery actually said when he saw what he was dealing with, he called in 3 other neurosurgeons to consult. He also told a story about how he had seen a case presented by a leading surgeon at a medical meeting where another child had a bone disease and also had enlarged veins and in his words, "the results were not good." (not sure what that means but it did not sound good to me!).
So the doctors decided they had to play it safe and just remove the bone. They did see some initial signs that the pressure was lessening and fluid was flowing better and decided to watch and wait. We will have a follow up MRI in a few months to ensure the syrinx is under control (or shrinks) and that the pressure improves. He said there are other ways they can go about lessening pressure in the future, should things not get better over time.
He has been resting comfortably, although he got sick from the anesthesia after surgery. He continues to keep up his positive attitude in between his snoozes.
The nurses and everyone at CHOP have been amazing. Asking lots of questions about HPP, very engaged in his treatment/therapy. Doctors willingly give out emails and are so helpful. We have had a great team every step of the way. Which brings me to the surgeons who sutured up his incision. I'll try to take a better photo tomorrow but I cannot tell you how incredible it looks. There must be hundreds of tiny sutures, it's like artwork. No staples or anything! The reason there are no bandages is because they look at the incision site to see if there's any evidence of pressure or swelling, which at this point, there is not.
Thank you again for all your thoughts, prayers, notes, texts, Facebook posts, visits! We could feel the love and the positive energy and it helped us get through a very tough day.
More to come tomorrow!
XO
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