Background:
We took Kai into the ER at Primary Children's Hospital just after Christmas in 2011 due to respiratory distress. He had had high CO2 levels previously, and we knew that a ventilator was in the near future. He also had a severe diaper rash (so bad that it was continuously bleeding) which we thought was a bad yeast infection. Turns out that he was not correctly absorbing some of the carbohydrates in his specialized formula, and it created very acidic poop, giving him the diaper rash. He would poop, get upset because it hurt, turn blue, try to breathe, fail because of his airway collapse, get frantic, poop again, and the process would start over. Sometimes it would literally take over 45 minutes to change one continuous round of diapers (I timed it).
After he was put on the ventilator and his formula changed to a regular formula, he began to rapidly put on weight, which you will see throughout the pictures. He didn't have to use the calories trying to breathe, and he was able to digest the formula. His diaper rash disappeared within several days after the formula switch.
These photos were taken the day before he was released from the hospital on the ventilator in January 2012. As you can see, his eye looks perfectly fine.
That night we went home, thinking he would be in the hospital for several more days. Early in the morning we received the phone call that he could come home that day. We changed our plans for Zuri and took her with us to pick him up and bring him home. We were really excited, but when we went into his room, we were greeted with this sight:
The staff told us he had conjunctivitis and sent us home with some antibiotic eye drops. Neither J or I have had pink eye, so we didn't know that that is not what it was. We were so anxious to get home, that we didn't demand to have a doctor come in and look at his eye. Hindsight is 20/20.
The next day at home. The swelling is slightly better.
The night nurse did some research and told us we needed to get him in to a doctor right away, that it looks like it is a corneal ulcer. So, we made an appointment with the on-call ophthalmologist and sure enough, it was a corneal ulcer. Due to his bulgy eyes, they are drier than normal, and all it took was a little trauma to his eye to cause it.
We tried to find out what happened at Primary Children's that night, but it was not recorded, and even though we put in a complaint, nothing ever came from it. Whatever happened that night, we don't know--no one will fess up. It still makes me mad. However, I try to give the benefit of the doubt, and it is possible that a nurses badge caught his eye as he/she was taking care of him. I have seen it almost happen enough times to think it a plausible explanation.
For the next few weeks, we visited the corneal specialist and the ophthalmologist every few days or so to keep an eye on it. We continued with the antibiotic drops just to make sure there wasn't an infection.
In fact, it seemed to be getting better, and we thought it was clearing up. In actuality, it was getting worse. The spot near the bottom of the ulcer, where it looks as though you can see the iris of his eye again is the trouble spot. It looks as though you can see his iris because you can--his eye had thinned out to the point that the iris was about to come out of his eye.
So, in order to save his eye, we had it sewn closed for three weeks with an amniotic membrane. It created a thick layer over his eye (complete with blood vessels, which is why his eye now appears red). We are no longer in danger of losing his eye, but the result is that he can't see out of that eye. When he is older he may be a candidate for a cornea transplant, but at his age the chance of rejection is too high to make the risk worth it.
This is a current picture! :-)
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