Monday, June 19, 2017

So There’s Good News and There’s Bad News…

I’ll start tonight’s blog post out with a comment from my daughter tonight while I was at the hotel pool in Detroit with her.  She said to me, “so there’s good news and there’s bad news.   The good news is, I don’t have boogums (what she calls boogers).   The bad news is, we’re out of tomatoes.”

Today my daughter went under anesthesia again with Dr. Trese to see if and what action needed to be taken on her left eye.   If he elected to do something, it would likely be a vitrectomy, an irreversible procedure that would be done if he deemed it necessary and would benefit her long-term, but nonetheless, it’s changing her natural eye by replacing parts with artificial substances.    A vitrectomy has already been done on her right eye, back in December 2015 and she’s done quite well with it since that time.   But it’s always better to have your eye (or any body part for that matter) in its original state and in working order over artificial means.

Dr. Trese said her left eye looked better in comparison to two weeks ago and better still than two weeks before that.   The hematoma has largely resolved although she still has some debris in her eye. Some of that could be blood and some he said might be particulate mater from the lens and lens capsule removal.

He said the retinal folds in her left eye are less.   There were six or eight folds several weeks ago and now there are only two folds remaining.   The retina is attached around the optic nerve with an area surrounding it also attached.   Since this is the main field of vision, this is a good thing, if the retina is functioning.

Her pressure was low in the left eye so he added Healon to return the pressure to normal.   He wants her on steroid drops once per hour if possible to work through the remaining blood and to try and help with the detachment.   One interesting side effect to steroid drops is in many people, it increases ocular pressure.   Apparently, and disappointedly, my daughter doesn’t seem to be one of those people because with all the drops, her pressure still dropped in two weeks.

I asked him what her lifelong prognosis is with eyes that regularly lost pressure due to lack of ciliary bodies were damaged and don’t produce much or possibly any fluids for her eyes.   He said sometimes ciliary bodies recover later and begin producing again but hers are damaged significantly and he’s not sure that will happen.   So will she have to have her eyes artificially inflated for life?   Quite possibly.   We’ll know more as time goes on.

We’ll return in a month and Dr. Trese will decide what to do with her left eye then.  He said he hasn’t ruled out the possibility of a vitrectomy, but he wants to wait a little longer and see how the eye recovers.

I asked Dr. Trese if he thought the hematoma was a possible side effect of the cataract/lens removal or trauma to the eye.   He said he thought it was more likely it was trauma, especially since it didn’t happen until several weeks after the surgery.   He said her eyes are currently in a very delicate state.   She has abnormal vessels in her eyes which are more apt to bleed.

It’s comments like that that make me want to put my daughter in a padded room with a foam helmet and protect her so nothing ever happens to her.   Only then (in the words of Finding Nemo) nothing would ever happen to her.   And she has to live her life.    So we work on a balance and do the best we can.

The Big Boy Update:  My husband told me my son was mad at him because he wasn’t having a big party for his birthday (which is in September).   My husband told him to tell me he wanted to help plan a party for dad and that dad said he wanted Randy’s pizza, a CostCo cake, and a new pinball machine.  My son looked at dad and said, “too expensive” and then walked away.

The Tiny Girl Chronicles:  My daughter hears and remembers very well.   As we were heading to the airport an instrumental song came on and had my son been in the car he would have seen the picture of the album on the screen and known exactly what the song was.   But my daughter couldn’t see it.   I asked her if she knew the song.   She said, “yes, it’s from Big Hero 6”.   And she was right.  It was the song from the credits of the movie too—and she remembered it.


1 comment:

  1. So was it the store cake, the pizza, or the pinball machine that prompted the "too expensive" part?

    ReplyDelete