Tuesday, February 4, 2014

Little N's First Year, Part 5: More Pre-Surgery Surprises

School started again on August 12th. J-babe entered 3rd (we held her back a year), Big B entered 2nd. On the first day of school, I had to take Little N to the ENT (Ear Nose Throat) doctor for pre-op. Part of the surgery included placing ear tubes to assist in the growth of the ears; routine procedure for cleft palate babies. Placing the tubes only takes about 5 minutes, but the baby has to be under anesthesia, so they do both at the same time. The strange thing about this appointment was that with the other two previous scheduled surgeries, I was never called by the ENT to schedule a pre-op, only for the 3rd surgery. And the ENT told me she wasn't even in town on July 31st, so she seemed puzzled as to why they would have scheduled it then. But I tried to put all this information out of my mind...it was in the past, and I could not change it, no matter how much I wish I could. The ENT appointment went very well, and they were on track for the following week. Check that off the list.

On the second day of school I got a surprise phone call from the geneticist of the craniofacial team that nearly sent me through the roof again.

"We got the microarray blood test results back, and it turns out that Little N has a microduplication of chromosome 22. We weren't expecting to find anything, so we are surprised. Because of this new information, I need to call the surgeon to make sure the surgery can still take place next week. A microduplication of chromosome 22 could mean he has heart issues, or kidney issues. And this could affect his ability to receive anesthesia."

While this news came as a shock to me, all I could think about was the possibility of having the surgery pushed back. So I first told her we had already been rescheduled twice this summer, and really could not bear to have it happen again. She said she would talk to Dr. Martin. Then she explained more about the microduplication, which made Little N even more unique. Apparently his duplication was much smaller than they normally see, but that did not mean he could have some of the syndromes or developmental delays that come with it. Up to this point, Little N was right on track, even ahead, of all his milestones, so no one was concerned, including me. What they thought, for the time being, was that this microduplication only caused the cleft palate. But what's even more interesting is that this duplication is usually inherited, and children from the same family can have it, but exhibit totally different symptoms. Because the symptoms of developmental delays, etc., match J-babe's, we are in the process of having her see a geneticist to determine if she has the same duplication. And if we have any more children, there is a 50% chance they will inherit the same duplication. But that is another post for another day...

We heard back from the geneticist. Some good news: Dr. Martin wanted to proceed with the surgery. Huge relief. Now the only thing standing in our way of the surgery actually happening was another emergency for the surgeon. We found out that Dr. Martin is highly specialized and can perform many types of craniofacial surgeries, so he is often called in last-minute for emergencies. The doctors in the main hospital will get a patient in the ER, and after determining the problem, go to a list where they choose the exact surgeon they need. Dr. Martin's name came up a lot because of how good he is. So we had the best surgeon...but we wouldn't be able to testify of that until the surgery actually happened!

My emotions the week prior to the surgery were a jumble of many things...fear, worry, uncertainty, frustration, but mostly hope. We prayed and prayed that this surgery would happen for Little N, that he wouldn't be passed over again. We knew it just had to happen this time, that the chances of being cancelled three times were miniscule. We called the plastic surgery office multiple times to confirm, and confirm again, and again. We did absolutely everything possible, but really, it was out of our hands. What we learned through this process was that you can't count on surgeons 100% for anything, because they are needed for more than just a routine surgery. Little N's repair was not a priority, and could be pushed back at any time. But to us, Little N's repair meant everything in the world. So all we could do was pray, and hope we didn't get another phone call...

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