Monday, May 16 2016
I'm posting an update on Jax's eye health because everyone I run into asks me about him and how he's doing. I will be forever grateful for all of the people that care about and support us, and we truly appreciate people asking about how he's doing, this is just the easiest way to update the masses, so here goes.
I got a call from the school nurse last week. She asked me to come pick Jax up early because his teachers thought he might have pink eye. I tried reassuring her that he didn't have pink eye, and sometimes his eye gets dry and a little red, but she insisted I come and get him.
Knowing that his pediatrician would look at his eye and not know what the hell was going on, I headed straight to Iowa City so we could see his pediatric ophthalmologist. My intent was to be seen, get a note that he in fact, did not have pink eye, and be on our way.
They got us in fairly quickly and after we established Jax was pink eye free, the fellow in the peds ophthalmology clinic decided we should check pressures and do an ultrasound of the eye while we were there.
Jax's pressure in his glaucoma eye was 10! I was super excited but had a feeling it was too good to be true. Jax was a champ and let them test it again (we normally do this under anesthesia, so the fact that he checked it while Jax was completely aware was amazing in itself) and again, the pressure was 10 (which is normal, it was previously in the mid-20's).
We then headed down the hall to get an ultrasound done to make sure there was no infection, and again, he was a champ. Toward the end of the procedure, I heard the nurse say, "hmm" which is never a good sign. Naturally, I asked her what she saw and she said, well, there's a membrane that wasn't there before.
We headed back to Jax's room in the peds clinic and my excitement about normal pressures turned into a knot in my throat. The doctors and nurses in the eye clinic at the U have known Jax his whole life, so when we are about to get bad news, its written all over their faces.
Dr. Larsen came in and sat down and told me that his retina is detaching and right now, trying to fix it would do more harm than good since Jax can't see much with that eye anyways. This was creating more room in his eye, which was why his pressure was normal. I was devastated.
After a transplant, 16 eye drops per day, peeling tape off of my baby's face multiple times a day, 3 glaucoma surgeries, multiple EUA's, heeling abrasions on the surface of his eye, and putting in/ taking out a hard contact lens (and crawling all over my house to find it when it fell out multiple times), I felt like all of our efforts to keep this eye safe for a future procedure for vision was a wasted effort. My heart was broken.
We have an appointment at the end of the month to confirm the prognosis and see whats going on, but we are just going to let nature take its course and it will eventually be completely detached, taking away whatever vision he does have in that eye.
After all of this, I was thinking about how far we have come and what the doctors told us at the beginning, that Jax would be blind. Among many things we feared for in his future, we imagined he would have to learn braille or use some type of tool to help him read.
We were reading a book at bed time tonight and this happened. He could see every little red apple on the small page. My heart turned to goo, it was precious.
This kid is incredible. Every time we have a set back, he proves he's gonna be just fine. I just love him so much and Tyler and I have learned so much by being his mom and dad. He'll always be our little super hero!
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