So since the last time I wrote, Tripp's eye has gotten a lot worse. It's swollen, red, and I think the contact is bent. Not to mention there is that symblepharon (skin tag that's fusing to his eyeball) in the corner that's just growing and growing. And I'm pretty sure that's what's causing the contact to move. Not sure though what is causing the lid to blister and swell again, though. Unless he's rubbing when I'm not looking. Which isn't often. SO- we went to the eye doctor Thursday and he consulted with the corneal specialists (who doesn't treat kids, by the way) and they decided that our next option was something called a "symblepharon ring." Yeah- I don't know. I need to research and put a call into my EB nurse. It's supposedly a piece of PLASTIC (layered in membranes) that they will put in his eye almost like a contact- but it covers more of the eye. They will need to cut a hole in the middle of it so he can actually SEE. It's supposed to also keep the symblepharon from growing (I think).
....INSERT BIG, HUGE, SAD SIGH HERE....
I just don't know what to do anymore. I know I should be grateful for having something new to try and having another option... but placing another piece of plastic that is thicker than the contact in his eye doesn't sound very EB friendly to me. Anyway- surgery is scheduled for this Wednesday at 2:00pm. I will be doing all the research and calling around that I can do on Monday and Tuesday to find our more about this surgery. But right now- the doctor and the corneal specialists both seem like they're ready to wash their hands of us.
And that's something else I could go on and on about- I feel like the doctors should be honored to be able to be Tripp's doctor. I mean, as a doctor wouldn't you like to be able to treat a child with a disease that only comes around every 1 in 2 million kids?? They could be learning so much and researching so much- instead they are intimidated. Sorry, I'm venting. I just got angry on Thursday because I could clearly see that his contact was bent (and anyone who wears contacts should know that a bent contact is irritating, right??) And you would think an eye doctor would know the same. Well, they didn't want to have to hold him down to get it out- and don't get me wrong- neither did I, but what were our other options? Leave it in?? I GUESS SO. Because it's still in- and still bent. And I can't get it out because every time I go near his eye- he FREAKS.
So please say some prayers for us- we need them. I'm close to having a nervous breakdown. It's the worst feeling when you don't have a clue how to help your child and he's constantly in pain. This is such a horrible disease in every single way. All I can think about is that Tripp's reward in heaven will be so great, that maybe it will be worth all this suffering. But sometimes that's just not enough to ease your mind, either.
So- I'll end with some pictures... I give you- MY AMAZING, BEAUTIFUL, ANGEL BABY BOY...
Some outside wagon time.
It was actually a tad bit tolerable one day last week.
This is probably why his eye is now bad.
My cousin Jamie has been coming over to help us with bath.
She decided that Elmo must be present at bath time and took it upon herself to buy him.
We. LOVE. Jamie :)