We started this week not know what would come of the follow-up sleep study. All we knew was that her last study showed terrible results including 121 apnea episodes and an oxygen level of 84%. Both of these results were extremely concerning and would need to be dealt with. After talking with the craniofacial surgeon in Dallas, Dr. Fearon, it was decided that a repeat was needed to determine what steps needed to be taken. More surgery was definitely on the table, including a tracheostomy. We just didn’t feel like what we see on a daily basis while she sleeps could possibly be what they saw at ACH. We decided to push to have the study redone in Dallas by technicians who are familiar with Apert Syndrome and all the quirky things it does to the body and that must be taken into account when hooking them up to all the monitors.
The entire experience during the study was much different than we had experienced before and it was all much easier on CA and us. That’s not to say that she enjoyed it…she still screamed bloody murder for 2 solid hours while she tried to fall asleep without her pacie and with all the things hooked up to her. However, once she fell asleep, all went relatively smoothly…all things considered.
Once she was awake and cleaned up, she was all good and loving life again!
Our day today started with meeting the anthropologist who is part of the craniofacial team. He took zillions of pictures and measurements and will do so again after each surgery in order to track her progress and help them study Apert Syndrome as a whole. She didn’t mind it too much and wanted to eat all of his instruments.
Next we went to visit Dr. Fearon. We knew that by the time we got to him, he would have the prelimanary sleep study results, have looked at her MRI from ACH, and would have a plan for which surgery would be needed next. I can honestly say that I had prepared myself for pretty bad results. Even though I wasn’t worried about her sleeping at home because she never shows any signs of distress, I couldn’t shake the thought that the results from early June were so bad and how could they improve enough to get her out of the woods. Boy was I wrong! As soon as we walked in the door, Dr. Fearon said she had a “fantastic sleep study!” He said that hers went better than when he has one done on him! There were no signs of trouble and her oxygen level averaged 99%!! 99%!! That was music to this mama’s ears! That tells us that she’s getting adequate oxygen to her brain and muscles and isn’t in any danger right now! When I told him that a tracheostomy was my biggest concern right now he told me that I can just stop worrying about that because he doesn’t see any need for it. That doesn’t mean that she will never need one because things could always change, but for now…she’s in the clear! She’s thriving and developing fabulously!
We also learned that he will begin his work with her CVR (cranial vault remodeling) in early September. He usually waits as long as possible to do this surgery because the longer you wait, the less likely it is they will have to have more than 3 in their lifetime. By doing hers this early, she will probably need a total of 4, but it needs to be done because of the type of craniosynostosis (skull fusion) that she has. We don’t have an exact date for the surgery yet, but we know that we have a good 6 weeks or so to sit back, relax, and enjoy our baby girl!
The second we walked out the door of Dr. Fearon’s office, I had to sit down because I completely lost it. I cried an abundance of tears.
I cried tears of…
Relief…Relief that this is one less battle that Callie Anne has to fight for now.
Exhaustion…Exhaustion because even though the sleep study was a better experience, it was still stressful, as was the week leading up to it.
Praise…Praise because of how I experienced the grace of God that calmed my baby last night when she was terrified of all the monitors and for all the answered prayers for positive sleep study results.
Surprise… Surprise because I really was prepared for her to need a trach. I wasn’t focused on the worst case scenario, but was simply preparing myself to do whatever she needed. No matter what.
Realization… Realization because another huge part of today was discussing the CVR surgery that will happen very soon. It made this all extremely real and no longer just something we talk about her needing when she gets “a little older.”
So…as we come to the close of a stressful couple of days, we are rejoicing in this wonderful news and know that there are so many others rejoicing with us! We LOVE Team Sweet Callie Anne!!