Wow! It’s been quite a week for this little family! As most of you know, we went to Little Rock for several tests for Callie Anne. We spend the weekend with the Brantmeiers and had a great time. We went to the zoo, Callie Anne said her first word (Mama!), and she had her first taste of food from a spoon. Lots of firsts!
And for the test results….
Her hearing test turned out well. She’s not having any trouble with her hearing.
The swallow study was not too terrible. She is definitely aspirating and they want to us to stop using the bottle for a while, but we get to start trying some baby foods. This will be a VERY slow process and we don’t expect her to eat on her own for a long time. But, it is fun to start trying some new things.
We are still waiting on complete results from the MRI.
The scope of her airway looked pretty good. Things are getting a little bigger in there. They also went ahead and put tubes in both ears while she was under anethesia.
The sleep study results are the ones that were really bad. During the night, she had 121 obstructive apneas. That means that something is getting in the way of her breathing and she stopped breathing for several seconds (between 6 and 20) while she was sleeping. She also had 32 central apneas which means her brain told her to stop breathing. They aren’t too worried about the number of central apneas, but are very concerned about the 121 obstructive apneas. Also, her oxygen level dropped to 84% (it should be 100%). This is VERY concerning!
I was not expecting these results at all and have had an extremely hard time accepting them. As I’ve said many times before, some days I just can’t find the positive side of all of this and I’ve had a couple of those days this week. Today our craniofacial surgeon from Dallas, Dr. Fearon, called me from his personal cell phone. That’s pretty scary in itself! Can’t be good news when that happens!
His thoughts are that these numbers are definitely not acceptable, but he isn’t ready to just straight for doing a tracheostomy. (that is our biggest fear, but if she needs it we will certainly do it) He wants to do a repeat sleep study in Dallas when we are there in July to be sure the results are truly as bad as they look. He will also take a look at her tonsils and adenoids and see if removing them could help with the obstruction. Tonsil and adenoid removal on a child this young isn’t as simple as with older children. It requires them to spend time in the PICU after the surgery to monitor their airway. He may want to add this onto her upcoming cranial vault surgery, or possibly do it sooner. We won’t know about that until he sees her in July.
Unfortunately, he said we are NOT out of the woods for a trach, but he wants to make sure it is absolutely necessary before making that call. I am so thankful that we have him! He said that if it were his child, he would want to check and recheck everything before doing a trach.
So….needless to say this is NOT what we wanted to hear. Ideally, we would have loved to hear that everything looks great and there are not conerns. However, that is very seldom the case with Apert children. That’s not the kind of news you get very often. There seems to always be something. It is such a complicated syndrome that affects so many different areas of the body that it doesn’t seem like we will ever get a completely positive report.
I really work to see the positive side of Callie Anne’s condition, and there really are a lot of positives, but there are times that I just need to be mad and sad and frustrated that things can’t just be “normal”! This is one of those times. We could really use some extra prayers. Please pray that the follow up sleep study will show more positive results, a tracheostomy will not be needed, and that David and I can get out of the slump we are currently in. We love our little girl more than anything in the world and just want things to be a little easier for her.
We already, after 6 months, have WAY too many photos in hospitals!