January 2 - Infusion #37

January 2 - Infusion #37

We got over to the hospital and got checked in. The drive over was cold cold cold!! The clinic was quiet and Levi got his choice of rooms, I was hoping beyond hope that he would pick Jungle as it has it's own thermostat and is always the warmer room, but of course toddlers have a way of reading your mind and doing the exact opposite of what you want, so even though he LOVES the jungle and talks about the jungle when we are home, he picked fish!

We got our stuff settled into the room and then he was off to do his work with Nurse A. He did great, sitting still mostly and getting most of the numbers on the first or second try!

Then we were off to fishy to get accessed. The access and blood draw went great as always! Nurse K does so good with him and is always happy and playful. She took the needed blood and then we were off to the playroom. We don't do anything until his blood work comes back now in case his counts have gone way up or something crazy.

The first thing Levi wanted to do in the playroom was build his rocket ship. He asked Grammie to fix his pants and then help him build it!

He got it all built by himself after a few tries with the numbers. He wants to have the numbers all lined up and spinning them isn't the easiest so it takes him a few minutes.

Then we were buying money and cookies. But the cookies had to come in the  mail. It was a cute game, and he was having fun "serving" me, Grammie, and dino. He also is working with money and is good at telling us the numbers on the bills now. And he was having a blast playing with the buttons on the screen.

Then we moved on to play with the trucks, or as Levi likes to call this specific one "the monorail!" He doesn't love Disney or anything?!?! Kid after my own heart!! Daddy I think you better start saving your pennies, it'll be two against one on where to vacation!! HAHA

Then he wanted to do an arts and crafts project, so we found him some paper and markers. He colored the page and then wanted to cut it, so we found some scissors and he went to town on cutting. Cutting is a skill he is very much still working on, so it was fun to watch him try, and struggle a little, but not give up.

Finally his blood work numbers were back. Dr. K came into the playroom to tell us that his counts were 158! Umm! That's a 28 point increase, and we have known the two labs to be very different, but the other way. DHMC is always lower then WD, so a 28 point increase could easily be a 50+ point increase had we been at the lab instead of the hospital. Dr. K asked us what we wanted to do. We discussed the options, but in the end decided to go ahead and do an infusion since we were already at the hospital and accessed, but we would be able to go home tonight and just do blood work at the lab like normal to follow it. During the deliberation process I asked Dr. K what she would recommend, and she didn't have a recommendation, she was leaving it up to us as there was just no way to know. We could do an infusion and drop next week because of a stomach bug, we could not do an infusion and be fine for months, we could not do an infusion and be back at DHMC on Friday because his counts tanked, or any number of other possibilities. This is where this disease is so hard to know, because there is no precedent, and it can change from day to day. I was glad that Grammie was there as her and I were able to talk it thru and come to the same conclusion.

After we had made the decision we cleaned up the playroom, headed to the potty, the teen room to get movies, the snack cupboard, and then the fishy room. Levi's new favorite snack is popcorn since he has learned that they always have it, so I had to pop that and grab drinks for everyone. By the time we had done all of that Nurse K had his tylenol and bennadryl, so we got him all set up with that. Levi picked Cars 2 as his first movie, so we settled in to watch the movie. The bennadryl pump did not want to work right and constantly kept beeping that there was an issue with the line. Nurse K came in a few times and would get it working but then it would start alarming again. Eventually she decided to just stay in the room with us for the duration of the Bennadryl (which is only 10 minutes, ish).

After that we settled in and watched the movie. This morning Levi had asked if the David's House gingerbread house could come with us and I hadn't seen a problem with that, so we had a new friend at infusion.

After the bennadryl had run and the saline had run, Nurse K came in to tell us that there was a delay in the blood bank and it would be a little bit until his plasma came up. So we unhooked him as it didn't make any sense to pump unnecessary saline into him. Since he was unhoooked and it was going to be a little bit I asked if it was ok if we all went down to the cafe to get lunch. Nurse K didn't have any problem with that, so for the first time ever during an infusion Levi got to go to the cafe to get lunch. Grammie, Levi, and I walked down to the cafe, stopping to see the stick moose of course! Levi had fun picking out his own lunch. He picked a cheese burger, a hotdog, and fruit! Grammie and I got burgers, chips, and salads. It didn't take long and then we headed back to the room with our food. Levi was very well behaved in the cafe and stuck right with us even once both our hands were full and we couldn't hold his hand anymore.

We got back upstairs and Levi remembered that the other bed was way more fun as it has buttons to push! So he wanted to eat his lunch over there. We got lunch all set up and continued watching Cars 2.

Levi was about half done with his lunch when his plasma finally came up from the blood bank. Nurse A came in to do his vitals to get a pre infusion base line. He did pretty well with sitting still for that, but didn't really want to give her his arm as he had to stop eating his burger! He really does love eating food.

Then the plasma started and we settled in for the long wait! Cars 2 ended and we switched over to the Emoji movie. Grammie had never seen the Emoji movie so it was her first experience with that. The infusion was going well. Levi was being good, and we were all cuddled under blankets in order not to freeze. The fish room is so cold!!

After the Emoji movie we still had a little bit before his infusion would be done so Levi asked for tablet time instead of another movie. I was fine with that as it uses a different part of his brain, and he usually plays games for a little bit before just watching bubble guppies.

Finally the infusion was done! Grammie and Levi headed to the playroom while I cleaned up the room and packed everything up. When I went into the playroom to check on them, they were sitting together and reading a book. It was a really sweet moment, so I stood in the doorway quietly watching them and took a picture, but didn't want to disturb them.

Then Levi played doctor for a few minutes.

And then it was time to go! We had to go back to David's House to pack up our stuff and such, so we knew it would be 45-60 minute before we were actually on the road, so we were fine with heading out, knowing that we could get back to the hospital ASAP if needed. Neither Mom or I ever want the rush back experience from down the road that we had the last time Mom came with me.

Levi didn't want to go! He was definitely having a full on melt down about leaving. I think he was getting tired. But we did finally get him and house moving and out of the hospital.

It's nice to only be doing one infusion this time and getting to go home. I am happy and appreciative that we have David's House to stay at when we need to, but I am even happier that we can go home to our own bed tonight!