April 14 - Infusion #26

April 14 - Infusion #26

Levi and I got over to the hospital. Levi was very good. We had a talk about how it was just Levi and Mommy and that he needed to help me out and be a great boy! And he took that to heart because he was awesome! He requested that we park on purple again, so I went all the way to the top of the parking garage. There are always close spots over there. Then we headed inside and got checked in and then headed out back! Wow! They were BUSY! As we were walking down the hallway Nurse A was cleaning out the jungle room. I am glad we didn't head over too early before our appointment today. Levi, like always, wanted to head right to the playroom, but that wasn't to be the case today, as they were ready for him and wanted to get right to doing work. Levi was not the happiest about this decision, but we made it work.

Nurse A took us into the vitals room and we took Levi's vitals. He did fairly well with that. It's always hit or miss. Some days getting a realistic blood pressure on him can take 6 tries, other times we get it on the first try. Then he was headed to the play room when Nurse T said, "not yet buddy! We gotta do work first!" so we headed to the jungle room. I was excited that we were going to have Nurse T, but that wasn't to be the case. We have Nurse J. She is nice enough, she just really isn't great with toddlers and has no patience for them, so it's really hard to have her. Levi gets super frustrated when we have her too, so that makes it tough. She has no patience with the kids and her organization skills could use some work as well. She wants him to just sit and wait like an adult and not like a 2 year old. And she wont let him help her, which makes him angry, because both Nurse T and Nurse K will let him push the flushes "all by himself" and she wont even let him touch them. So that's a battle. I try my hardest to explain to him that every nurse is different, while trying not to call her out, it's a tough balancing game. But overall he did well! He definitely has done much worse when we have her. He got accessed and we got the bennedryl started and then started watching Cars.

 He ate and drank lots today! But it kept him entertained. He wanted to go to the playroom but I explained to him that I just wasn't ready to attempt that by myself yet, and he handled that explanation well! So we chilled and watched movies.

 After Cars was over he asked for "Poppy's Movie" AKA Trolls, so I went in search of that and put it on. Then he wanted to color and do stickers, so we set up his art table and did that for awhile.

 Dr. C came in to talk about Levi and how he was doing. She talked about the clinical trial that she worked super hard to get him into. She seemed frustrated that they made the call to not let him in based on his age when they hadn't indicated that early on and had them go through the whole process. She said she understood and sort of expected it based on FDA regulations, but that the fact that the company led her and us on about the possibility of getting accepted anyways was frustrating, and I definitely agree. She said that she is staying in touch with the company and that they and us are still on the list for future trials if it gets to that point, but that is years down the road. I am so glad that the staff here are amazing and care about Levi so much to pursue these types of possible opportunities even with the frustration, and the fact that they found it not us. It's just nice to know he is in such good hands.

Before we knew it the infusion was over! It seemed like it took forever and yet no time at all at the same time. Confusing I know, but if you are a parent you'll understand how a minute can feel like 15 hours, but 4 hours can feel like 10 minutes. It's crazy! De-access went ok. Levi did great, but Nurse J just isn't good at it. She somehow got the needle stuck and couldn't get it out right, and then Levi was kicking/pushing off of her, because he doesn't like being de-accessed and I can understand that is frustrating, but she yells at him to stop, which of course only makes him angry and makes him really start kicking. It's a vicious cycle!

Numbers came back today at 251! So a great number pre-infusion! I am excited that numbers are staying high going into vacation. We did get a lab slip to take to Florida with us in case we need it, since our labs are standing order we don't have anything to travel with. We hope to not have to use it, but better to have it then not.

Levi wanted to go to the playroom. And as per our normal agreement he was allowed to go! He was so happy to be free and go play! The CLS Intern watched him for a few minutes for me so that I could use the restroom and get our room cleaned up as I knew that there was someone who was temporarily "assigned" to the playroom until we got moved out of the Jungle room. They were the busiest I have ever seen them!

Then we were off to head home. Levi did great today! I was a little nervous headed into my first full David's House and Infusion by myself, but now I know I can do it if I need to. Levi could not have been better for me. We do need to work on being able to go to the playroom and potty while he is connected just him and I, but that will come! The local ice cream store opened today and I think we are headed there for lunch on the way home because Levi did so well!

Next steps: Blood work on Monday to make sure the infusion worked well, and then off to Disney World!