February 27 - Clinic

February 27 - Clinic

We got over to the hospital and got checked into clinic. The receptionist is so sweet to Levi and knows that he always wants a "key" even though he isn't an adult and doesn't need one.

We got out back and Nurse A told us that she didn't have to do height and weight because we had been in patient yesterday and she could just use those ones. It's interesting that clinic will use the height and weight from in patient, but in patient will not use the height and weight from clinic even on the same day! Because they weren't quite ready for us yet Levi headed off to the playroom to play.

After a few minutes of playing it was back to the Jungle to get blood work done. Since Levi was already accessed this only took a couple minutes. We had the new nurse, Nurse St. She is very nice and seems super sweet. She is younger and interacts with the kids very well. She is replacing Nurse T who left a few months ago. We will always miss Nurse T but it seems like Nurse St will be a good replacement.

Then we were off to the playroom to play again while we waited for results to see what his counts had done over night. Levi bounced all over the place playing with everything in the playroom.

When we first got into the playroom there had been a little girl playing doctor (one of Levi's favorite things to do) and he had gone up to her and asked "can I play when you are done?" It was so well spoken, but of course the little girl said No. Eventually however she left the playroom and Levi was able to play all the doctor he wanted too. They had run out of a lot of supplies but Jay went and asked Nurse A for some and she freely handed over band-aids and wipes and other supplies. I love that they let the kids play with the actual things, it definitely makes it less scary.

Finally the counts came back at 68. A nice increase but still a low number. On the drive up on Sunday Jay and I had talked about the fact that lately Levi's counts have been all over the place when we have given him more then one infusion. What has been happening is that his counts go crazy high (for him) and then come crashing down just a few weeks later, almost like his body says "hey I got all this plasma now I don't have to do anything!" so we had discussed requesting that the doctors only give one infusion and then seeing what happens. Of course with a count of 25 after the first infusion that wasn't a choice. But with a count of 68 we were faced with that choice. Dr. K would definitely give him another infusion, or we could go home and wait and see. This was a very difficult decision to make. I know that we had talked about it in the car and that on paper only giving one seemed like a good idea, but in actuality taking home a child with a platelet count of only 68 who had just dropped/gotten sick for no known reason seemed really scary. Jay and I talked about it for a while. Dr. K came back at one point in the middle of our conversation to help walk us thru things, not picking a side, but walking thru both options. This is just another example of how scary USS is. We have no medical background and yet we are making serious medical decisions for our child. There is no specific protocol for USS, in fact every one I have talked to (all like 4 parents who have kids in the world that I have found) have different courses of treatment for a kid with low counts and just in general. There is no right or wrong answer, and there is no way to predict what the right outcome is.

In the end Jay and I decided to not give him another infusion and instead to go home. However we would be doing blood work every day as well as having my Mom come down to the house to watch him so that he could stay out of school and away from as many germs as possible. This was a scary and emotional decision for me, and for the first time ever I actually ended up breaking down at the clinic. Only one other time have I cried at the hospital and that was January 2016 when all hell broke lose. Usually I save any break downs I have for home when Levi is in bed and can't see it, I need to stay strong for him.

After we made this decision we talked to Dr. K about it and she was fully supportive of that decision but she would have been just as supportive of a decision to infuse. Jay and Levi were in the room reading a book while I talked to Dr. K about this decision as well as about a few other general questions we had. 

After a few minutes Nurse St came in to deaccess Levi. We used the spray which made him giggle, but it really helped to get it all off.

Then Levi asked if he could go for a wagon ride, and since we weren't in any big rush to get home we said for sure. So we went around and around the circle a few times.

Then Levi picked out a snack, which of course was popcorn, his go to snack lately. So we popped the popcorn and then we headed out.

Levi put his key in the slot and we were officially out of there.

We got into the car and he immediately wanted his snack! It's good to see his appetite is back!

The rest of the week is going to be fairly stressful as we determine what his counts are doing. I'll be heading to Biddeford tonight to pick up Mom from Martha and then they will be home together tomorrow while I go to work. If his counts go down at all or level out then we will be back for an infusion at the end of the week. So we are just waiting now. Hopefully all will go well and counts will go up.