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Mama: Here. (Rolls car on Jack's leg)
Jack: Car. (Takes car and gets on floor to lie down so he can watch it roll.)
Mama: Car!
Jack: C-car. Car starts with C.
Mama: Yes. Car starts with C.
Jack: Everybody sit down in the car.
Mama: Everybody sit down.
Jack: Stay safe.
Mama: Everybody stay safe.
Jack: (chuckles and continues listening to his recorder while rolling car)
Mama: (chuckles and grabs camera before she misses the shot)
I remember when going to the park in the afternoon on a hot day took a lot more effort than throwing a couple water bottles in the car. I remember when getting Jack a drink was a lot more effort than unscrewing a lid and handing him a bottle. I remember when going anywhere meant enduring screaming from the backseat. I remember but those days seem long ago.
After much discussion, Dr. Fearon said that he felt that Jack could wait at least another year and perhaps longer before he has his midface surgery. He did say that he feels that Jack's midface will require more distraction (pulling forward) than most of the other kids because it is so retruded. He said that Jack will probably wear the RED a bit longer than most kids to get as much over-correction as possible.
Dr. Fearon said that the bigger Jack is the less complicated he thinks the surgery and recovery will be. Also the longer we can wait, the less likely Jack will need another midface surgery. We are going to wait as long as we can for this one. Dr. Fearon is a bit concerned about the Bipap preventing us from having as close to a typical life as we all could have. The truth is Jack being on the Bipap does make life a little different for all of us but not in such a way that we are ready to head toward a major surgery sooner rather than later and perhaps cause the need for another repeat midface surgery in Jack's future.
Dr. Fearon told us that sometime after Jack's midface surgery he will do another cranial vault to move Jack's brow bone forward to provide better eye protection. Other than that, he did not project any further surgical needs. That was also great news.
Now my friends, I have a few specific things I'd like to ask you to pray about.
1) In our most immediate list of concerns, we have been informed that because Jack had such a great sleep study back in August, Jack no longer meets Blue Cross Blue Shield's criteria for oxygen. We already had to pay out of pocket to get Jack's Bipap AVAP because Blue Cross does not even have a code to cover the machine. Now we are being told that we will have to pay the monthly rental cost for Jack's oxygen concentrator. Jack does not always require supplemental oxygen with the Bipap but when he gets a cold or has increased congestion for any reason, it is hard to keep his oxygen saturation up without the supplemental oxygen.
2) This next prayer request is more of a right now and over time prayer request. After the midface surgery, Dr. Fearon puts a nasal trumpet in the child's nostril to facilitate breathing during the most swollen state. Jack's nasal passages are VERY VERY narrow and there is a very real concern that a nasal trumpet will not fit. Please pray that the nasal passages will grow large enough for that nasal trumpet to fit in there when it is time.
3) Another prayer request in preparation for Jack's midface surgery--Dr. Fearon told us today that he has only had one child so far who required a tracheostomy after the midface surgery. She needed the tracheostomy only temporarily until the midface could be pulled far out enough for her to breathe. David, Jack, and I have worked long and hard to avoid Jack having a tracheostomy while still maintaining adequate oxygenation during sleep. We would like to continue to avoid it even temporarily. We discussed some options with Dr. Fearon. I am asking that you pray that God will give us and Dr. Fearon clear guidance in what to do when it is time to decide which route to take.
I had somewhat of an epiphany one day when I was worried about Jack and whether his "grumpiness" was just usual kid stuff or a sign/symptom of something bigger. If I truly believe that God is working out his plan in God's life then I also must believe that God will guide me as his mother if I let him. And I also have to believe that everything that happens in Jack's life works for his good even if I can't see it at the time. So y'all remind me of this little epiphany later because I believe God is faithful but, like the children of Israel wandering in the desert, sometimes I forget.
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Dr. Hung wants us to go ahead and get Jack fitted for some ear plugs too. He wants Jack to wear them even in the bath tub.
Dr. Hung said if these measures don't stop the infections he may remove Jack's ear tubes and replace them with a tube made of a different material. He said that some people actually react to something in the tube that creates these chronic cycles. Also, he said that the tubes themselves are probably colonized with bacteria and taking the tubes out and rinsing the ears with an antibiotic solution may take care of it all.
We were encouraged that he seems to believe that we can resolve this chronic cycle medically.
Our final appointment of the day was with Dr. Price, the neurosurgeon. We got good news there too. She was very happy with the MRI. She had it all ready for us to review. There is a remarkable difference between 2007 and now. The ventricles are so much smaller. Compared to last February, the ventricles are slightly smaller. Jack's head circumference is exactly the same as last February but he is 18 month's older so the gap between Jack's head circumference and the growth chart is getting smaller. Jack has no chiari malformation (a condition which occurs when increased pressure causes a portion of the brain stem to be pushed into the spinal canal). All of this means that Jack's VP shunt is doing it's job.
Jack still has a large cranial defect on his right temple. Dr. Price says that she may close that up in a future surgery but she does not feel that it is necessary to do surgery for that alone.
We'll see Dr. Fearon tomorrow and get his take on everything.
It's been a long, tiring but very good day.
Jack was so great with the whole day. He said he wanted chicken for dinner. We stopped at the first chicken place and got that big boy some chicken.
Dr. Hung, the ENT, was very encouraging. He wants us to try using Atrovent nasal spray again to help dry up Jack's secretions. We can give it several times a day or back off to once every few days--whichever works best to help decrease the secretions but not make them so thick that they obstruct his nasal passages.
He has given us more aggressive ear irrigation instructions and Jack will get another round of antibiotic drops to clear up his current infection (that we did not know he had).
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We were a bit surprised that Dr. Davis, the anesthesiologist, decided to actually intubate (put a breathing tube in) Jack this morning. We like having all diagnostic procedures done at Medical City because Dr. Davis usually doesn't intubate. But Dr. Davis thought it was safer for transport from the MRI suite to the GI lab and thankfully Jack quickly recovered. He did not even need his Bipap after his procedures.
Jack's a bit woozy but he's up and around again.
We'll get Dr. Price's (neurosurgeon) impression of the MRI this afternoon. Dr. An said that the endoscopy looked good. He has sent off tissue biopsies and will call us later this week with results.
ENT appointment is next.
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