Wednesday was a busy day for us. We had three appointments that day. Two for Kai and one for Zuri. We had respite hours scheduled for that day and we had an extra nurse who was in training. It was really nice to have the nurses along for the first appointment (Zuri and I went to her appointment on our own while the nurses took care of Kai at the house). I didn't have to worry about Kai in the back at all and I had help getting around with both kids. Having the nurses along (while it felt a little silly to have such an entourage) made the whole journey so much less stressful and easier.
The nurses had to leave before the last appointment, which was in Salt Lake, so I did that one on my own. Luckily (sad to say), because of Kai's ear infection, he was just sleepy and did not have any incidents in the car. He is loving his new car seat--so much more comfortable for him!
The appointment in Salt Lake was to get Kai's stitches out of his eye! He now has the ability to open both eyes. However, the corneal ulcer left a lot of scarring, and the thin spot is still there. Because of the placement of the thin spot (and because it bubbles out) it looks as though it is his pupil, so his eyes don't appear to look in the same direction. It is a little disconcerting, until you realize it isn't his pupil, which is hidden under the white of scar tissue. You have to look in his right eye to know where he is really looking because he can't see anything (besides light) out of his left eye.
While I was trying to get a good picture of Kai with his eyes open, Zuri had to get into the shot!
At this point in time, the recommendation is not to have a cornea transplant. The reasoning is because he is so young, they believe his body will just reject it, and we will just have to do another one in a year anyway. The doctor also said that we have not fixed the underlying problem--the fact that his eyes protrude, so even with the best care, the chance of another corneal ulcer developing is almost 100%. We are keeping his eyes lubricated and that is about all we can do.
Thursday, we woke early and took Kai in for his CT scan. The results were not so good, and in order to figure out how to proceed, they want to do another MRI in a few weeks. It will be his third MRI (it was also his third CT scan). Poor little guy.
As stated, the results of yesterday's CT scan were not all good, but there was one tidbit of good news. The good news is that while the fluid in his ventricles is still abnormal and a little high, it is not high enough for surgery, or even to be termed "hydrocephalus" anymore. Yay! The bad news: basically, they kept saying Kai's bone structure is abnormal (yes, we get that--it goes along with his syndrome). The problem is that his spine is too compressed and too narrow at the area near his brain stem. Our options are: to leave it be, to put Kai in a collar, but that would be extremely difficult because of his trach and vent, or the last option is to do surgery, remove a bone and fuse things together. If we just leave Kai as is, any torque or sudden movement to his neck can cause irreversible spinal damage. As if I wasn't already paranoid enough about his alignment--now I am doubly so! The collar would be restrictive to Kai and hard because of his trach and vent. The doctor was reluctant about the surgery because of Kai's age and size. He said while it isn't unheard of to do the surgery on one so little, it is very unusual and he hesitates to do it. That is where the MRI comes in. If the MRI shows that there is alignment slipping/bone slipping out of place, or it shows that the surgery is needed based upon danger to Kai, they will. Otherwise, we will go one of the two other routes. He said that people with these kind of alignment issues tend to "fall apart." At that point my mind was just on overload and I didn't think to ask what he meant by that.
Honestly, I don't know how to feel about the news. Yesterday, I was pretty upset, but today it is just one more hurdle. I was reading another blog yesterday while waiting for the doctor, and she was talking about only allowing herself the facts when it came to her daughter's limitations. When she was ready to accept them she would let them in one by one. I have come to realize that I do that with Kai. Line upon line. I get the facts, but until I am in a place to process them (not at the doctor's office), I try to keep my emotions out of it. I don't think about what it all means on an emotional level. Trach...g-tube, oxygen dependent, corneal ulcer, cranial reconstruction, abnormal bone structure.... These last ten months have been crazy, and have taught me so much. I am a better person for them. I am learning how to deal with things even beyond the physical nature of taking care of Kai, and because of it, I am able to take news like we received yesterday and be okay. Disheartened, yes, but okay.
As for Kai? He is still a happy little (I am going to need to stop using that term with him soon--he is not "little" anymore!) guy. Despite everything, he has a curiosity for the world and is content to just be held while he sucks his fingers or blows raspberries.
On a lighter note, Kai is going to be published in a medical journal! It had been talked about when he was in the NICU, but I officially signed the release papers yesterday. The doctor told me that it will take about three months to be published and she will send us a copy! Pretty cool.
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