Please keep Evan in your thoughts & prayers today. He is going under general anesthetic to have new ear tubes put in, and also have some dental procedures done (x-rays, teeth cleaning). He and Jeremy have to check in at 1:15. I just spoke with Jeremy about 20 minutes ago, and they were in the parking lot at Children's. The procedures themselves are minor, but having general for a kiddo with respiratory issues like Evan is always a huge deal. That's why we try our best to combine procedures and have as many things done as possible with each anesthesia.
The last couple of times, Evan has done fine with general anesthetic. In fact, the only time he had difficulty was the first time he was supposed to have his cleft palate repaired. He couldn't keep his oxygen levels up. Even then, he still had most of his procedures completed that day, just not the palate repair (there was concern Evan might not be able to be extubated easily, and if the endotracheal tube is pushing on the surgery area, it can cause the repair to fail).
The one thing that is really different for us this time, is that this is really going to be an out-patient procedure...Evan is coming home tonight! No room in the PICU or floor has been reserved for him (having said that, I am sure room would be made for him if he needed it). Before, Evan has been sent to the PICU post-op, even for procedures that most kids could go home afterwards.
What is CHARGE???
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
4 comments:
Evan, you are in our thoughts today. I'll say a little prayer for you tonight and I'm hoping as I write this that you are at home, recovering like a champ.
Evan,
You are in our prayers sweety. We know you can do this!!!
Brian, Sarah, and Caleb Hlebiczki
I am glad to hear it all went well and he feels good.
Hugs,
Crystal and Eva
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