Let’s get right to it people. My sense of time has been on drugs recently or at least it feels like it because of all the unexpected medical stuff that has been happening nonstop since first week of November. I have to keep reminding myself that it is no longer November.
After Milo’s whole asthma attack (see post), we had about 5 uneventful days where we got to catch up on those days when Milo was in the hospital. Right before Thanksgiving, Milo went back to see his ocularist and got another impression done since he already outgrew the one he got one week prior. Milo is still not happy with the process of putting in and taking out the shell but at least it’s not bothering him when it is in his eye.
Milo had an EUA just last week and the good news is that his pressure is stable. The tube part of his Ahmed valve has worked itself out to the top layer of his iris, so the doctor removed it since it wasn’t functioning anyway. He left the plate part of his implant in since that would be a bigger procedure. At the same time, his glaucoma doctor discovered a shallow retina detachment and a retina doctor took a look and reported no damages as of this moment. It is just sitting there taunting his vision and my stress and worry. The recent discovery of the shallow retina detachment is sitting behind the laser wall that Milo got when he was 11 days old (he got a laser surgery to prevent his retina from further detachment, hence, his vision on his only seeing eye is not so good). And according to the doctor, it will do no threat to his vision unless it breaks through that wall. The really sucky part is that it doesn’t slowly happen or it does not creep up to the wall, it just happens and when it does, there goes Milo’s vision. It may never break through that wall but the fact that it exists is driving me crazee and making me worry. The doctor told us that we will know it break through when Milo’s vision worsen. How great is that. No warning sign. I am not even sure if this is something they are able to see at a regular office visit.
We’ve been prepared since day one that Milo’s vision will never get better and that it can and might get worse, meaning he will be completely blind. He has been doing so well in his three years of life and seeing more than what all the doctors have expected which made my expectations way higher. I know Milo would still be fine if he were to have no vision, but it’s just not fair. That’s the best way I can put it.
The night of his EUA, Milo threw up all over our bed (he barely ate anything that day since he was so whiny and was complaining of pain). The next day he pretty much threw up all day and even had diarrhea. At first we thought it was his reaction to the anesthesia but it was probably a stomach bug he caught from the hospital. The next day he was better and then he started complaining about pain in his right eye. We spoke with the doctor the day before and she did tell us that he might be sore from the EUA and the tube removal. The next day he woke up crying/screaming and refuses to open up his eyes because it hurt and he was very light sensitive. Eventually we got him to snap out of it and he opened up his eyes but still had complaints about his eye hurting a few times. The next two days were pretty much the same except that he didn’t really open up his eyes at all. Luckily we had a scheduled routine appointment with his ophthalmologist so he was able to check his eyes before the weekend. It turned out that Milo had an infection on his right eye and hence the pain and light sensitivity. It’s been almost a week and it’s almost all better. We went to see the ocularist and he did a minor cosmetic adjustment on his shell and after 2 days, he had some discomfort so we went back to see him and it was just a minor scratch on the shell that he had to smooth out. SO, now with only a few days left before we leave for vacation, I really hope that nothing else will happen. Because really people, what else can happen. I think in the month of November and up to today, we have covered the whole spectrum of Milo’s eye conditions, from his retina and glaucoma to his prosthesis and then to the surprising asthma.
And oh yes, my little Matilda. She barely got much time from us because we were so busy with Milo. She has been a great little sister and was easy to take care of during all of this as we go from doctor’s visits to hospital to just being in a dark house while Milo was in bed. But there was one day when I did take Matilda in to see her doctor because I noticed a decent size lump on her breasts and some discoloration. An ultrasound was done right away and it’s benign but we have to keep an eye out in case it changes. The last thing I need is for my kids to have more crazee medical crap because I already got way too many going on. If I were to ever encounter a person called GOD, I would say, DUDE, what IS up with all this stuff with my kids and why and what the hell were you thinking?
This is the story of my November and December. And I can’t wait til our vacation and to report to all guys about our awsum trip and how we had no medical surprises afterward! Let’s cross those fingers and whatever else you are supposed to do to make bad stuff go away. And to practice, let’s make this new sick feeling I am getting tonight be gone by the time I wake up tomorrow.