June 28 - Infusion #11

June 28 - Infusion #11

We got to our infusion a little early as per usual. We got checked in and headed out back. Levi was insistent that he lug his own lunch box, which resulted in Grammie lugging Levi as he was just dragging the lunch box along the floor. We walked out back and Levi suddenly got shy. He did tell Nurse K and Nurse T who was holding him ("My Grammie!!") but other then that he wouldn't even say hi. They assigned us to the Jungle room and we went in to put our stuff down. Nurse A was ready for vitals right away, so off came his shoes and we headed into the vital room. Levi did great with that! He stood on the scale with his hands on his shirt! He gave us all a good laugh when he was getting his height taken. He stood good on the floor and up straight like he was supposed to. Then Nurse A said lets see how tall you've grown, as she slid the bar down onto his head, and he slowly went up on his toes and pushed the bar higher! We all chuckled. Then it was on to the fun of blood pressure, temp, and O2 (the ones we do over and over and over during the appointment). But Levi did great!! We got his blood pressure and O2 on the first try!! And his temp on the second! :)

Then he was off and running to the playroom! He showed Grammie where everything was. And ran around like a crazy man. He bounced from the BBQ, to the car, to the stroller, to the shopping cart, to the cash register, to the baby doll, to the medical supplies, to the kitchen, and back to the shopping cart. It was exhausting just watching him!! After a few minutes Nurse K came in and was ready to access Levi's port, so back we went to the Jungle.

Wall of texts are boring, so adding a cute picture from a few days ago just because! 

The port access went great as always. He was a little squirmy when we have to hold his head, but otherwise he did great. Nurse K let him help her push the syringe of Saline into the port and that always makes him happy. She went to push in the second one without asking him to help her and he looked right at her and said "Can I help please" it was very sweet.

Once the stickers were on and the blood was drawn and the tube was attached to his shirt, he jumped down out of my lap. He was about ready to head back to the play room when in came Dr. V and another doctor. Turns out Dr. V has a resident on rotation with him right now. Dr. Sam came in to do a check on Levi and Dr. V went out so that Dr. Sam could get practice. He asked us a few questions. It was clear he had been taught what USS was only recently as he has some interesting questions, but for the most part it went quite well. He had very good bedside manor with a toddler! He did a very thorough check up on Levi, much more then we usually do. Levi was pretty cooperative, though he did keep looking at Dr. Sam and saying "All done now!" The only thing he wouldn't do is open his mouth, but that's pretty common. Levi doesn't like anyone all up in his mouth, thats for food, and toys only, no people looking in there.

Nurse K came in and hooked up Levi's Benadryl while Dr. Sam and Dr. V were talking in the office. Then in came Dr. V to talk with us and check out Levi. Today we found out that Levi is even more of a rare case then expected. Switzerland has finished running the DNA of Jay and I. One of us has the expected mutation that causes USS (the one that stops any ADAMTS13 from being created). The other however has a mutation that has never before been linked to USS. It makes since biologically, but has never been seen in a USS case. The mutation causes the ADAMTS13 protein to change shape, instead of being circular like it is supposed to it is elongated, and would therefore not work if he had any. So genetically Levi is the only case ever reported to have the mutations that he has. I said "so it's just bad luck?!" and Dr. V said you could say that, however in the medical world we call it a "unique circumstance!" So yes, just bad luck! :(

After a slight mixup Levi's benadryl finished and it was time to start the infusion. We started watching Planes (yes he once again insisted! Thank you Nurse A for finding it this time) and Levi started eating! This was too be the theme of the day, Levi eating!! I lost count on everything he ate today. It was at least 7 sippy cups of juice, a package of cookies, mandarin oranges, gold fish, chocolate teddy grahms, white teddy grahms, a granola bar, M&M's, and "fries" (veggie straws). I think I have forgotten a few things in there though. Nurse K and I joked about if she was sure that she had given him Benadryl and not a steroid today, because he literally didn't stop eating.

First snack!

The other theme of the day was potty! Levi went potty 6 times during the infusion. He did pretty good with pushing his pole to get there, but man did that kid pee a lot. He stayed mostly dry all day, and really peed every time he asked to go. When we changed his pull up to go home it might have had 2 pees in it! So proud of him (this is the first infusion where I haven't been peed on!)!!

Planes ended and he still wasn't falling asleep. He would get sorta quiet in my arms in the chair, and then he would get hyper. He was definitely trying to keep himself awake. So then we put on Finding Nemo. We had seen Finding Dory in the theater on Sunday, so it seemed fitting. Levi was getting more and more done at this point. He didn't want to sit still, didn't want to be held, didn't want much of anything, so we were trying to distract him any way we could.

Grammie and Levi playing Candy Crush.

His infusion was almost done. The bag was empty we just had to finish the line. Levi was done!! And decided to "swim" on the floor like Nemo!

Finally we were done done!! :) Nurse K came in to his room to de-access his port. He got a big bird band-aid which he was excited about, until it was actually time to put it on. The de-access went as well as ever. It goes great, except for having to take all the tape off!

It was then time to head out. He said good-bye and we were out the door. Levi lugged his lunch box and we headed out. He was a little wobbly on his feet still from the benadryl, and being quite tired at this point, but we made it to the car!

We will be back in three weeks!!!