I was back at the eye doctor today, because of this:
Gross, right? It actually isn’t, other than being ugly red. It doesn’t weep at all, and isn’t contagious, and doesn’t get crusty or anything the way pink eye does. It’s just a horrid red eye that hurts like fire knives in my eye ball, always lasts at least a week, and alternates eyes every month. It makes me crazy, and when it is really bad then I cannot tolerate light and certainly cannot type at the computer.
Half of our book was typed with one eye or the other closed tightly against the glare of the screen, even with the lights turned down.
Anyway, I have two drops I have been using to try and make it stop, and went to the eye doctor for routine follow-up today.
Except today he had more results, and annoying news: it is not one infection after another, and it is not caused by allergies as he had hoped.
It is the same infection just coming back because my body can’t even fight it off.
That says a lot about my body, he said, because eyes are supposed to heal pretty quickly, even faster than anything else.
He said that I have rheumatoid arthritis, also, but I don’t know what an eye doctor knows about that or how he can tell.
He also said that my cancer is still there, and that there is probably something else auto-immune happening as well, and could tell that I got shingles every time my kids got their chicken pox boosters.
Blargh. This is my life.
All this to say, that he gave us the news today that if we cannot beat this infection, I am going to lose my eyes.
No big deal for a deaf girl, right?
Blargh. Blargh. Blargh.
What do doctors know, anyway? Nothing. Also, I am suddenly 12.
He really is a very good doctor, and we really do love all our doctors. It has just been a very hard doctor kind of week. Or year. Or decade.
So he has called in a new kind of eye drops, and also sent me back to my primary care doctor, whose office is either closed for lunch or for the day. I can’t figure it out. But I will try them again this afternoon, and then again tomorrow if they aren’t open this afternoon.
In the meantime, if that were not enough medical drama, we got a call from the pulmonologist today. They got a call from the early intervention case manager, who told them how sick the baby has been, and that they feel this is significantly worse than she has ever been, and that she nearly died last week. They told them they feel like she needs a trach immediately, and that someone really needs to connect with the ENT in Utah who can explain why the trach would help developmentally, etc. They told them about the blue lips, which is new for her during desats, and her literally asking for help breathing, and her passing out during therapy (which wasn’t even gross motor activity at the time). They told them everything we have been trying to tell them, except it was from a professional and not just a parent, and so it was better language or had more weight or something. I don’t know. But it means they want to see her tomorrow afternoon for a crisis appointment to discuss a trach.
She has been scheduled for a trach three times and it didn’t happen, so I am not excited yet.
But I am relieved that they are going to see her, and we will have new directions and can adjust her safety plan for breathing accordingly.
We will see what they do for her tomorrow (or not). I still don’t think anyone has connected with her ENT in Utah.
Here she is this morning at breakfast lineup. I carried her into the kitchen when oatmeal was ready, and put her down like always with the other kids waiting for their bowls. She stood there a moment, but then just laid down because she was too worn out to stand up even those few minutes.