It's been an exhausting week. This whole trip started a couple of months ago when I happened to send a frontal and profile picture of Jack to Dr. Fearon. He was a bit alarmed by the height of Jack's head and the fact that Jack's forehead appeared to be so far recessed. He advised that Jack return for an anterior cranial vault remodeling to make some more room for brain growth to allow for good blood flow to the brain as well as to prevent or stop any increased intracranial pressure issues.
When we got to Dallas and Jack had his MRI, we were surprised to hear from our neurosurgeon that Jack did not appear to have any pressure issues.
Then we met with Dr. Fearon who continued to advise that we move forward with surgery. He strongly believed that Jack needed more room even if the current MRI did not show increasing ventricle sizes. He reminded us that he usually monitor's the kids' optic nerves and monitors for development of sleep apnea to determine timing of cranial surgeries. Because Jack's optic nerves are already severely damaged and he already has sleep apnea, those methods cannot be used with Jack. Ultimately, David and I decided to trust his experience, expertise, and intuition. And we decided to switch to a more proactive neurosurgeon who works more closely and more often with Dr. Fearon.
The next afternoon, we received confirmation that we made the right decision. Dr. Swift said that Jack's shunt was not working properly and the pressure within the shunt itself was high. Apparently, the shunt valve was clogged and while it allowed the ventricles to drain, they were not draining as they should have. Dr. Swift explained that if the shunt was working properly the band of unfused bone just behind Jack's forehead should have fused. This was news to us since our former neurosurgeon was not bothered by the unfused bone. Apparently the unfused bone worked in Jack's favor since it kept things from getting too much tighter prior to the surgery.
Dr. Fearon and Dr. Swift discussed replacing the shunt while they were already operating on Jack but ultimately decided against it because a properly functioning shunt could cause the brain to not move into the newly created space allowing excess room for the brain to bounce around in. Dr. Swift pulled a lot of cerebral spinal fluid out of the shunt and was concerned about fluid building up again quickly in the ventricles causing the brain to be pushed into the space by rising pressure so he would not allow Jack to leave the hospital without another MRI showing that the slow functioning shunt was not allowing too much fluid to accumulate in the ventricles. Fortunately, the MRI yesterday morning showed ventricles that were unchanged in size.
Unfortunately, when cutting across Jack's brow bone to open up the skull, Dr. Fearon cut across Jack's frontal sinuses. The frontal sinuses are not present at birth. They begin developing around age 8 and continue to grow in size into adolescence. Jack's were large enough that Dr. Fearon cut into them and then had to create a flap over the sinuses to keep bacteria from the sinuses from getting into Jack's brain. Dr. Fearon wants Jack to avoid using his Bipap because he is worried the positive pressure will push any bacteria through the flap. The area needs three to four weeks of healing before we consider using the Bipap again.
Jack's breathing was great in the hospital just after surgery but each day we found that he needed a bit more support--more elevation of the bed and oxygen--to keep his oxygen saturation levels where he needs them. Last night at the hotel, he never really got into a sound deep sleep because he would obstruct his airway and that would wake him up.
Now we go home and wait for Dr. Swift to call. He'll let us know whether he wants to tap the shunt after Jack has had a little time to recover from this surgery or whether he just wants to continue to monitor Jack with MRIs to determine when or if the shunt needs to be removed and replaced.
Thank you for all your prayers so far. We continue to need them.
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