Sleep Test...tonight.

Tonight my son and his father will pack up and head to Children's Hospital for a sleep test. Rylan has sleep apnea, from his cleft. I have put this test off for as long as possible. It has been easier for me not to think about hospitals and surgery. During Rylan's first 13mths of life he had 3 surgeries the longest one lasting 4 plus hours. His first surgery was at 8 weeks old and I am thankful we live in an area that has a Children's hospital, but freaked out by the thought of subjecting my child to ongoing surgeries.






Rylan before any surgery.....


Rylan Today!!

It is a fact the Rylan will have several more surgeries through out his life time, this we know. But the last few years we have had some down time, and it has been nice. The first two surgeries I watched as the orderlies took my son from my arms, he screamed and cried as they walked thru the double doors and into the surgery room. The last few surgeries I have opted to actually take him back and hold him while he is put under. Each situation comes with its own drama. But I will keep going back with him, because it keeps him calm.
Tonight should be pretty much no big deal....they will hook him up to a bunch of wires and watch / listen to him sleep. I pray they don't recommend surgery, but in the back of my mind I know they will. I found this photo on-line.

If this test results in surgery this will be the goal to close a gap in his air way. The surgery is called Pharyngeal Flap, us non-doctor people call it a P-flap surgery.

Here is his mouth now (before surgery) the second photo is an after photo.
The goal is to close his airway. Nothing about stitches in the mouth is easy. When the repaired his palate he had approx 150 stitches in the roof of his mouth.

*Keeping our fingers crossed that the testing tonight goes smoothly, and does not result in surgery. Any warm thoughts or prayers sent in my son's direction would be greatly appreciated.











Comments

Farrell said…
warm thoughts being sent!
Unknown said…
I totally agree with going back with the kids for surgery and I am so thankful that Children's allows it. Jake has had three sets of tubes and his adenoids taken out (no big deal, but scary for him and I have gone back each time with him) and Olivia had a large hemangioma that had to be removed (which required 2 surgeries) since it was causing vision loss and she herself has had two sets of tubes and her adenoids out as well. I have also gone back with her each time. Good luck with the sleep study. (hopefully he can get some sleep!)

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