It has been a month since we found out about the type of surgery that Kade will need, and as a parent the word "worry" does not even sound suitable. My sister in law's mother, Judy Bazzell emailed me a webcast that a Dr. Jallo @ Johns Hopkins Hosptial in Baltimore, Maryland conducted on Chiari Malformation and later, very kindly made the suggestion that we might want to check into sending Kade's records for this Dr. to review for a second opinion, just in case we would be interested in seeking a second opinion. After careful thought and much prayer, I started checking into Dr. Jallo, checked with our insurance in which it would cover 100% with no copay or deductible, and at that point I had no hestitation, booked his appointment, our flight and hotel, and started making preparations for us to go to Maryland.
That has been three weeks ago. Three weeks in which we could relax just a little, in anticipation that Dr. Jallo could either give us peace of mind by agreeing that the surgery that Dr. Oakes and Dr. Rozelle at Childrens want to do is the only answer to his problem, or by giving us some hope that there is something for Kade that would not be so invasive.
We fly out tomorrow morning. Kade's appointment is Monday. We fly back that night and go back to Children's on Tuesday for Kade to have a sedated CT scan and then we meet with Dr. Oakes and Dr. Rozelle for more discussion and to possibly set a date for Kade's surgery.
For those of you not familiar with Kade's situation, he has a complex Chiari Malformation in which his brainstem is being compressed which is causing him to have severe central sleep apnea, in which he quits breathing while he is sleeping, and this is constant, all night long. We found out Kade was born with this, and that the bones in his skull and cervical spine did not form properly. The only answer to his problem is to have a Chiari decompression with occipital cervical fusion. In other words, they are going to take out a small section of his skull, part of his upper cervical spine, and then fuse the remainder of his upper cervical spine to his skull.
Please lift up my little boy in prayer, and continue to pray for our family during this time. We should have definite answers by Tuesday.