November 1 - Infusion #18

November 1 - Infusion #18

We got over the the hospital and Levi's anxiety was starting to set in. His listening ears had all but vanished and he couldn't make a decision about anything and was ping ponging from things to things and melting down over everything. This is the hardest part of the whole infusion. As soon as he is accessed it all goes away, it's just the build up for that.

We got settled in to the jungle room, Levi really wanted the fish room, but after seeing who was in there, I think that they really needed the bed with rails more then we did! The clinic was packed! Usually when we go we see several other people filter in and out throughout Levi's appointment. Today people just kept coming in and settling into rooms. Nurse K and Nurse T were both a little overwhelmed and running around like crazy!

Nurse A did Levi's vitals and we settled in to the playroom to play for a few minutes while everything got ready!

Another little boy joined Levi in the playroom with his parents/grandparents. Levi got a little overwhelmed by that as the other boy was non-verbal and loud, so he took off down the hallway with his plane!

Dr. V saw Levi running down the hall and said that he would see Levi next so we flew the airplane to the Jungle. We talked to Dr. V for a few minutes about what was going on and the last month with Levi's counts not going up much. We talked about Levi's rash and the fact that his eye was more droopy today then most days. Dr. V took a look at him and wasn't overly concerned about anything. He did tell us that he has been talking to the doctors in Switzerland who are in the process of  beginning a clinical trial on children that is a med that is just the ADAMSTS13 protein, not the rest of the plasma, but is still made from human blood. And that he has been in talks with them about this and is on the list to get into the clinical trial if/when it makes its way to the USA. But Dr. V wanted us to know that although we are discussing this, it is still a long ways out from coming to the USA if it ever does. But that we will be kept up to date on the trial overseas now, and are on the short list of first invites in the USA. So a little ray of hope, maybe!

Then it was time to head back to play! When we got back to the playroom, Levi settled down a little and even asked if he could get the potatoes for the boy (he had been playing with them when we left).

Then it was time to start doing some work. We headed to the Jungle room and Levi was accessed! The Benadryl was started and our routine started. Levi got very dazy and sleepy, but didn't actually doze off at all this time. Daddy had picked out different movies, so Levi watched Mickey's Halloween first. The plasma got started after the Benadryl was working and we went with our normal routine of 75, then 100, then 125. The big was slightly bigger then previous bags, but since Levi is getting bigger he needs more!

When Mickey was over, Daddy switched the movie to "Home" and then went to get lunch. Levi asked to go potty while Daddy was gone and we made our way to the bathroom just him, and me, and his pole (that thing really needs a name as much as it tags along with us!) Levi did great and was such a big boy riding on the pole and listening to Mommy. When we got back Daddy had come back with lunch and was a little worried that we were missing!

Levi set and ate his lunch and finished watching the movie.

Levi was starting to get a little restless. So he started walking around a little. He ate his cookie while standing on the step to the bed. But kept watching the movie the whole time.

When the movie ended Levi's bag was empty, but we still had to get all the plasma through the line, which takes about 20 minutes. So we set and read books and colored. Levi was antsy, but overall did really well. Levi's counts came back at some point during the day at 128. So 29 point drop from Thursday, but that's not bad at all. And an infusion at 128 is pretty good, that should go up nicely!

At the end the room gets pretty busy again. We do a lot of busy at the beginning, and then it gets pretty quiet for several hours with the nurses only coming in every little bit to make sure things are good. As things were getting busy again Levi seemed a little annoyed. So every nurse that came in he said "You Guys Are Driving Me Crazy!!" over and over and over! Everyone got a good chuckle out of it! Nurse T came in and flushed Levi's port and put in the meds and then removed the needle. Levi was free! We cleaned up the room and as is now tradition Levi went back to the playroom for a few minutes to play!

Then we were on our way home. It took about 40 minutes, but Levi finally fell asleep.

We will be back in three weeks for our next infusion! For all those keeping track that is Thanksgiving week!