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Saturday, March 27, 2010

And the drama continues....

Well friends, I had hoped that my next post would be great news of Jackson's road to recovery. Unfortunately that is not the case. Here is what has happened in the last couple of weeks.
After we got discharged from the NICU, we had a follow-up appointment scheduled at the Critical Care Center for a week later. So we go, and they drew blood and tested his platelet level, which was 54,000. I was a little worried since it had gone done since our hospital stay, but the Dr. said that was to be expected and he wasn't too worried about it. He also said that we would need to come in every couple of weeks for the next several months to keep checking his levels until they get back up to a normal range. Other than his numbers being low, Jackson looks great. He has been eating and growing and showing no other symptoms, which the Dr. was very encouraged by.
The Dr. was however, still worried about my levels as well. He wants me to get tested every few weeks as well until my numbers get normal as well. He thinks I probably have chronic ITP, so that's just lovely.

So this past Wednesday was our next visit and I had high hopes that Jackson's levels were going back up, only to have those hopes dashed. His levels were 15,000! I burst into tears and the poor nurse just stared at me. She quickly put us in a room and went to go get the Dr. When he got there, he quickly reassured me that even though the numbers were low, Jackson was in no immediate danger. When your platelet level gets that low, you are in danger of internal bleeding, but because Jackson is so little and not a toddler, where they can fall down a lot or bump into things, he does not pose that much of a risk. The Dr. did want him to get another IVIG treatment though, to boost his levels back up. So we had to go over to the Infusion room, where all the other kids get their chemo treatments and they started his IV.

During this visit also, Phil and I got blood drawn so we could be tested for another genetic marker called NAIT, which is a more severe version of ITP. If Jackson has this, it would be a life long thing, which he would have to take medicine for.

So while Jackson is getting his treatment, they inform us that because it is on a timed release machine, it was going to take a very long time. Since the Infusion center closes at 6:30, and he would still be getting the treatment, they would transfer us to the ER's Short Stay area and get us a room. Basically this area is for patients who stay in the ER for less than 24 hours. That was a little unsettling. Once we got over there, the nurse told us that Jackson was the youngest patient there and the youngest she's ever seen getting an IVIG treatment. We finally got done at about 8:30pm. Our appointment that morning was at 10:30, so we were at Tx. Children's for 10 hours!! We were exhausted!
Our next appointment is in 2 weeks, so at least I have a little break for now. We are still requesting your continued prayers and support as we are still not out of the woods yet. The Dr. is really hoping that he will grow out of this in the next several months, which most of the time happens. But until his numbers get normal, we are looking at many more trips to Tx. Childrens.

2 comments:

Donnetta said...

Lots of prayers coming your way!

Kiki said...

Man, Sharon, that is heavy. we'll be praying for you guys!