Today, Tom went to the Children's Hospital of Pittsburgh for another evaluation under anesthesia (EUA). If your child has visual problems then this word is probably VERY familiar to you. To get a really good examination of a child's eyes they put them under anesthesia. I imagine it's very hard to do a good exam on a wiggly, screaming child.
We used to do frequent eye exams that involved me and a technician holding Tom down while he screamed and the doctor tried to get a view of his eye. Also, it would be impossible to get a good eye pressure check that way because being upset would cause the pressure to rise.
The in-office exams were not easy for anyone and I sure don't miss doing that every week. Since Tom's eyes have been fairly stable since last spring, we began having EUA's every 3 months to monitor his retinas.
Thomas developed glaucoma last summer and treating it has become our focus. His eye pressure just keeps going up and can no longer be controlled with eye drops (Xalatan and Cosopt) and oral medications (Diamox). Today was the third EUA that turned into a surgery to try to bring his eye pressure down. I should have been ready for it but I wasn't.
The first glaucoma surgery was to implant 2 small drainage tubes (Baerveldt and Ahmed) into the eye. This was intended as a proactive approach to his difficult to manage pressure. A month later one of the tubes was turned on, and today we went back under to see how the pressure had changed. Unfortunately, it was still really high so they decided to open the other drainage tube.
He springs right back! This is after glaucoma surgery #2 |
We are very lucky that Thomas handles anesthesia very well. I think today was the 12th time he's been under. After a while you stop counting that stuff. We are at the hospital so much that the staff are beginning to recognize us!
We will go back next week for another EUA to see how the pressure has changed after today's surgery. Let's hope we got it right this time and the pressure is controlled!
Hello, I just came across your blog about your amazing son Thomas. I run the Congenital Glaucoma Network which is a place for all people affected by childhood glaucoma to share their story. Please check us out! We have lots of parents that would love to learn from your experience. Best of luck to Thomas!
ReplyDeleteDoes he have FEVR? Were you at the FEVR conference? It sounds just like what my son has.
ReplyDeleteHi Kimberly - Thomas does not have FEVR. He was tested by Dr. Capone's office for Norries because he has bilateral retinal detachments. But thankfully, he does not have Norries according to genetic testing. He really doesn't fit into any specific disease. He does have Persistent Fetal Vasculature Syndrome in both eyes.
ReplyDeleteYou are truly amazing!
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