I'm a bit behind on blogging so some of you may be confused about when/why we were at Dr. Fearon's office meeting Manning. After we saw Dr. Cogen and updated Dr. Fearon, we talked with Dr. Price, Jack's neurosurgeon. She was worried that Jack might currently have pressure on his head and she wanted us to get a MRI ASAP.
It's complicated so I won't go into all the details but we also ended up having another sleep study at Children's Hospital (the local one) on Tuesday night. It was the best sleep Jack ever got in his whole life and he had a cold at the time. They put him on the new BiPap AVAPS machine. It's similiar to the VPAP machine that I asked Dr. Lazono to try previously. Basically, it's the same machine, just a different brand. Anyway, it adjusts Jack's inhalation and exhalation pressures up and down during the night as he needs it. He slept deeper and for longer periods in deep sleep. His saturation level stayed above 92% the whole night. Wowweeee!!!! Go ahead and start praying about this now. Blue Cross does not yet recognize the new machine as different from our current machine so they will not pay for another machine yet. We will have to come up with the money to buy the machine and then fight with Blue Cross and hope for some reimbursement.
Since we needed the MRI and Dr. Price, our neurosurgeon, wanted to see us, we planned on getting a second opinion from Dr. Stager, our ophthalmologist in Dallas, while we were there. Plans were made quickly and by Thursday, we were on a plane to Dallas. Jack did very well with the MRI. Fortunately, at Medical City Dallas, the anesthesiologist only uses gas to sedate Jack so there were no worries over a breathing tube.
We had the MRI and then saw Dr. Fearon. Dr. Fearon was happy--the ventricles appear a bit smaller on the MRI. He measured Jack's head and noted that it was 1.5 cm larger than when he saw him in August. He wanted us to see Dr. Price and talk with her but he anticipated no surgery since Jack's head obviously did not need to be made any larger.
So we were rushing off to Dr. Stager's office and I made a courtesy call to Dr. Price's office to make sure tht she was still in surgery (the plan was to see her after her last case). I actually spoke with Dr. Price who was looking over Jack's MRI at that moment. She asked us to go ahead and come see her first because she was done for the day. Expecting a pat on the head and "get another MRI in 6 months", I called Dr. Stager's office and explained that we would be only slightly delayed. Unfortunately, Dr. Price had a lot to say and we missed Dr. Stager completely.
Dr. Price has recommended that we move to Dallas (sort of LOL). She measured Jack's head at 0.5 cm larger than her August measurement. She said that his head should not be growing at all. She said that she believes that he still has pressure on his head and although the ventricles are slightly reduced in size the third ventriculostomy is not doing the job. After consulting with Dr. Swift (the major proponent of third ventriculostomies), the plan is to place a VP shunt within the next month. Once the shunt starts draining the ventricles, Jack's brain will get smaller inside that large cranial cavity of his. Dr. Price expects subdural fluid collections to occur.
About four months after the VP shunt or when the size of the brain is reduced enough, she and Dr. Fearon will perform a cranial vault reduction so that Jack's smaller brain will not be injured by sloshing around in the large cranium.
I am so glad that we know this and I am glad that we are movng forward and preventing any further damage to Jack but I cried myself to sleep Friday night looking at my precious gift from God who has been made to go through so much during his short time on this Earth. I truly believe that God has a good plan for Jack. I just wish we could be experiencing "normal" family life for awhile.
P.S. No, we have no plans to move to Dallas just yet.