Ophthalmology

   The area of concern is that clearish spot on the bottom part of the ulcer

Yesterday did not go as planned at all.  We went to Kai's eye appointment first thing and heard the news we were expecting.  "The ulcer is looking great...shrinking...just keep up with the drops and the lubricant..."  Then we heard some news that we weren't expecting: "I am concerned about the bump, though.  It could be his iris being pushed out of his eye."

What? Is that even possible?  But wait, he has had that little bump since the beginning of this whole fiasco--why is it so concerning now?  So, we were sent up to Salt Lake to see a cornea expert--right away.  I had to call up and cancel Kai's OT because we wouldn't make it home in time for the appointment.

Two doctors ended up looking at Kai's eye.  The first doctor had a hard time getting a good look at the eye because he was awake and having none of it.  The doctor confirmed that there is not a perforation at this time, but the layers of tissue protecting the cornea are extra thin on the bump.  He briefly mentioned the possibility of having Kai's eye sewn shut for a short time to help promote healing and retain moisture.  He then said he doesn't think that is the case with Kai because with his eye shut we wouldn't know if the eye does perforate (which it could even sewn shut).  He said that he wanted a second opinion, but most likely we would just increase the eye drops back to every hour and make sure we are keeping his eye lubricated.  The doctor said that we would be going up two to three times a week for follow-up appointments.

When the second doctor came in, Kai had fallen into a good sleep and allowed a better eye exam.  The second doctor said that the eye is so close to perforating that it could be within days if not hours.  He said that because Kai is unable to close the eye all the way due to the bump, even with lubrication, it is still a fine line to walk.  He said that the best course of action right now is to get Kai into surgery.  They are going to put a film of amniotic fluid on his eye (which will create a film barrier) and sew his eye closed.  It could be for a couple weeks or a couple months.  We are not sure at this point in time.

The surgery is scheduled for Friday afternoon.  They wanted it sooner, but because of Kai's medical needs, they have to do it at Primary Childrens, which works out better for us because J will be able to be there without having to take work off.  Right now we are trying to save the eye, and so  much information was thrown at me at once that I forgot to ask about the long-term effect this all has on his vision (or if he will even have vision in his left eye).

I was able to find out some useful information though.  One of the readers of this blog mentioned the possibility of herpes (caused by a cold sore or something).  Neither J or I get cold sores, and those who do haven't been around Kai recently, but it was a good lead to follow, so I asked about it.  The doctor said that although herpes can present similar issues as Kai's eye, it is not what is going on in this case.  He said that due to the early hardening of his skull, Kai's eye sockets fused, which meant that his eyes had nowhere to grow but out, which is why his eyes are so protuberant.  The doctor mentioned some reconstructive surgery when he is older.  Additionally, because of the protuberance, his eyelids don't always close all the way (which is why he will often sleep with his eyes open).  The dryness that results can literally melt the cornea.  Kai's natural defense are the tears that his eyes produce (if you have spent any time with him, you will see that his eyes tear frequently, even when he is content and happy).  He thinks what has happened is that for some reason, Kai's eye got dryer than normal and then some bacteria got in it and this is the result of the two.

That hypothesis is the best that I have heard.  It  makes more sense than some negligent staff at the hospital causing some trauma and not reporting it.  Even so, the state Kai was in when we walked into his room Friday morning was unacceptable.  He was dirty--gross.  Eye all swollen and pussy.  G-tube had crusties all around; his hair was matted and he just looked miserable.  We should have insisted he stay longer to have his eye addressed at the time, but he had been at the hospital for nearly three weeks.  We were appalled at the state he was in and more than ready for him to be home.  We took at face value that he had conjunctivitis and the medicine they gave us would work.

We can't play the what-if game, though.  It doesn't do any good.  Hopefully, even though it sounds awful and cruel, hopefully sewing Kai's eye shut for a time will promote the healing and moisture that his eye requires.  Hopefully doing so will keep his eye from perforating.  Hopefully the damage will be minimal.  Yesterday, receiving the news was hard.  I admit, I broke down and cried--but today, today I am feeling a lot better and more optimistic.  Something is being done.  Kai is being treated by specialists in the field, and I trust in their expertise.  This is for the best.