June 16th, 2009
Trey’s Myringotomy surgery (tubes in ears) was early, early this morning and I am so happy to report that he performed like a CHAMP! Drake spent the night at his friends home so we only had Broc and Trey to contend with in this early morning hour. To our relief both boys woke up in great moods. Trey was on the verge of tears when he noticed that Broc was eating and was told he couldn’t have anything to eat until after his surgery. But true to form, Trey was a very cooperative little guy and waited to eat – Whew, that could have gotten ugly ~ thank God Trey is such an obliging child.
We almost ran into another hitch when the anesthesiologist noticed that in the section marked “other items of concern” was something very foreign to her – it read MPS IV, she excused herself and came back with the head medical director to ask a few more questions of us and to voice their concern. We are very lucky that Trey’s EKG and echocardiogram have all been normal, that Trey has done well under anesthesia and that we were convincing enough to ease their apprehension, otherwise I don’t think we would have been able to continue as planed and been sent home to reschedule at an actual hospital instead of in a “surgery center”. Mike and I were extremely worried of having Trey put under, this only made matters worse.
It’s so hard to be afflicted with such a very rare disorder that almost 100% (here in Arizona) of the time even people in the medical field don’t have a clue what Trey’s disorder is and we have to go into a complete dissertation every single time…it’s always such a painful reminder of how little is known about MPS and how much this all stinks!
Trey’s surgery was uneventful. Our day was just as the doctor had warned us it would be, Trey would be a bit crabby and tired. I wish we would have know to bring some Tylenol because as soon as he woke up he complained of his ears hurting. At home we gave him medicine and soon he stopped telling us his ear’s hurt. When we ‘tested’ his hearing Mike and I both noticed a difference – yahoo! Throughout the day Trey would complain of his ears hurting, once I gave him his prescription ear drops and once before I got around to giving him his Tylenol, he fell asleep. I am so happy to have finally gotten this done for Trey and am looking forward to the benefits this will make in all of our lives.
We love you our little trooper and hope you have begun to hear the difference of a whole new world
3 comments:
Cami,
It was SO good to see you and your boys the other day. Thank you for sending reminders to look at Trey's blog. I love reading it and keeping up with your family. I am brought to tears every time I visit. Not in sadness, but in amazement of your strength, grace and beauty. What a gift all your beautiful boys are! I will miss seeing you, but will look forward to keeping up with you through this blog. All the best. Wendy Blair
Hello,
I came across your site while researching my daughter's condition, which her current doctors haven't been able to determine, and from the description and the photos of your son, I believe she may have MPS IV too. I'd love to speak with you a little bit and perhaps get some information on your son's doctor.
The URL that I'm including (hopefully that shows up) is a recent photo of my daughter. The wrists, bell shaped chest, knocked knees, short neck and short stature all seem to fit, but I just don't know, and neither do her doctors. Her genetics doctor is baffled and after months of waiting we still don't have any answers.
Would you mind contacting me at michael@talonsystems.net? I'm going crazy not knowing what she has and I'd really like to get her to a specialist ASAP.
Dear Trey,
I'm sorry I wasn't there. I had a sleep over with Parker and Christo-pher.
I love you Trey.
LOVE DRAKE
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