May 9 - Infusion #41

May 9 - Infusion #41

We got over to the hospital and the parking garage was packed and for the first time ever there were two guards at the guard stand, it has never had anyone in it before. They simply asked me if I had an appointment or not. When I said yes, they simply waved me in. It was very strange. We parked on purple for Levi, but in all honesty we only went up one extra floor. The first spots were on yellow.

We got inside and got checked in. Then Levi went running back to see Nurse A. It was very quiet out back and she gave him the choice of whatever room he wanted. He picked the jungle room, no real surprise there! Then we went in to do his "work". He did an amazing job on the scale and height and getting his blood pressure, temp, and oxygen level.

Note Levi's socks are upside down. They have luigi on them from Mario Brothers. When he put them on this morning he said "I don't want to look at that old dude with the mustache" and put him on the bottom so he could just see the stripes. It was funny and Grammie and I had everything we could do not to laugh at him.

After his work we headed into the playroom to play. Levi was bouncing around playing with lots of different things. We see a lot of anxiety the mornings of infusions now from the time we get up until he is accessed. Once the access is done we don't see much more for the rest of the day, so that's good. But it makes for a stressful and exhausting morning.

After a few minutes in the playroom it was time for the access. Nurse S was our nurse today and she does a great job with him. For the first time ever he would actually wear a mask and keep it on the whole time. In fact Nurse S brought in masks for Grammie and me and not one for Levi since usually he won't keep it on and he looks at her and goes "Where is my mask?" She went out and got a Mickey Mouse one for him and he put it on and kept it on the whole time of the access.

After the access was done Dr. K came in and said that she had taken a look at Levi's file and there is no chest x-ray so we will need to do one. BCH needs a chest x-ray in order to know for sure where Levi's port is before they will use it next week. It's kinda frustrating that we need to do more medical stuff for him because of this. Why won't BCH just accept DHMC saying that his port works correctly, why do we need to do an unnecessary x-ray?! Ugh. But yet again it's a hoop I have to jump thru in order to get the procedure done next week.

We headed over to x-ray. Levi was very anxious about this and unsure why we were leaving his normal clinic area. We got over there and got checked in and waited for his turn. While we were waiting Levi saw a sign about osteoporosis and asked us what it said and what it meant. We tried to explain it to him in a 3 year old way. He had a full on sad heart break melt down and said that he could never have slushies again and he can only ever have milk. We tried to calm him down and explain things, but he was not consolable. It was kinda a nightmare. Thankfully he got called in and that changed his mind set.

We got in and had to get Levi lined up. It was a standing x-ray and he struggled to stand still and look where he was supposed to. Lining it up took quite awhile, but we did finally get a good picture. Then we could head back to clinic. Levi practically ran back, I think he was ready to be in his own comfort area.

We got back over to clinic and he was ready to drive his car to the snack drive thru.

He backed into the drive thru this time.

Then his car ran out of gas. He put in enough gas to get back to the parking lot, but determined that he needed a wagon ride to get a drink. Grammie pulled him in the wagon and they went around and around. He stopped to get a drink and was upset that there was no sunkist, so he went around the loop again and asked Nurse A if she had any "Orange Bubbly Soda". She did, so she put it in the fridge for him. It made his day.

While I was popping Levi's popcorn Dr. K came over to tell me that Levi's blood work had come back. His count was 259. So, as expected, still a great number. Dr. K and I had a discussion about what to do. She considered us going home and possibly coming back on Friday or next Tuesday to do an infusion. I put my foot down on that and said that the BCH doctor is requiring an infusion in order to sign off on the procedure and since I needed the procedure I need the infusion. Dr. K laughed and said "so it's the battle of the hematologists at this point." I said yes, but since I am stuck I had to insist on the infusion. Dr. K and I talked for a few more minutes and then decided that we would give Levi a third of an infusion. This would take care of BCH's need for an infusion, but shouldn't boost Levi too high which would hopefully help us not crash.

The infusion got started right away which was nice. The clinic was still very quiet and I asked Nurse A about it, and she said Levi was the only patient in clinic today! Wow! We settled in for the Benadryl and infusion with a movie. Levi picked Doc McStuffins to watch today. It should hopefully be a short day since the infusion is only a third.

Dr. K came in to do a quick check of Levi. He was annoyed that she was blocking him from watching  Doc McStuffins.

Even though it was a short day it seemed to take forever.

Levi was really good at snacking and watching his movie.

After the infusion was done we went to get un-accessed and Levi had the worst melt down ever for no real reason. He just couldn't seem to calm down. I held him for a few minutes and tried to get him to relax, but it wasn't working. He just was screaming and crying. We walked down to the playroom and finally he settled down once we got out the play-dough. He couldn't ever tell me what was wrong. Nurse A and Nurse S seemed concerned and I couldn't tell them what was up. Dr. C saw him and took one look at him and said, "thats a Benadryl anger". After she said that it all made sense, and yup that's exactly what it was. Normally Levi would have had another 90-120 minutes of relaxing in the chair and watching movies or playing on his tablet and letting the Benadryl wear off that he didn't have today. It shocked me how much it affected him, but it definitely did.

After letting him play for a few minutes we cleaned up our stuff and headed out of clinic. We went down to the cafe for lunch. I thought Levi would think that was a fun treat, but instead he just didn't want to listen or do anything. He did finally eat his hot dog and apple so that was good.

On the way out of the hospital we stopped and saw the stick moose which usually makes Levi happy, but again today it was just another melt down.

We got to the car and Levi continued to be a crazy man. It was a LONG drive home. Levi was loud and crazy! But at least this unnecessary infusion is over and now we can go to BCH and tell them that we did everything that they insisted so they need to sign off now for next week.