November 14 - Infusion #33

November 14 - Infusion #33

We were running a little behind this morning so we parked in the first parking spot we could find which happened to be on yellow. Levi wanted purple badly, but I told him we just needed to find a spot. We got inside and got registered. The receptionist remembered that Levi likes to get a key, which made him really happy! I was shocked she remembered since it's been 12 weeks since we last registered with her, but she did. It was pretty cool!

We got inside and the jungle room was full. We were told we could either have room 10 out back or have the fish room. Levi picked the fish room, which was nice. I was hoping that having the beds would help Levi take a nap! We did our work with Nurse A. He kept the O2 sensor on his finger for the first time ever and we didn't have to use a sticky one! And we got his blood pressure on the first try. Then he was off to play in the playroom for a few minutes before Nurse K was ready to see him. He got all accessed which was a pretty quick and easy process and sent his blood work off to the lab. Dr. C had also ordered labs for his thyroid and we got those done at the same time! It's nice that they are in the same DH system so that they can order labs an we can have them done anywhere.

After he was accessed we were off to the playroom to play while we waited for labs to come back. If his counts had gone up by a lot we would not be doing an infusion. I didn't expect that to happen, I don't think anyone did, but we had to check. So we spent a bunch of time in the playroom playing.

The doctor came in to talk to Levi. It was not Dr. V but instead a doctor that has worked under Dr. V in the past. He is nice enough, but the whole conversation was a little weird. He came in the playroom and set down. He asked us a few intermittent questions, but mostly just set there and watched Levi. He didn't really interact with Levi at all, pretty much just set there. I even had Levi come over and sit with me for a second so he could do his exam, but he didn't, he just set there. After about 15 minutes he said, "well I will just examine him when he's in his room" and left. It was very odd. For the record we never saw him again! And he never came and examined Levi.

Levi was very proud that he put this whole puzzle together by himself. He hasn't been doing puzzles well lately, so doing this one made him really happy.

Levi was getting tired of being in the playroom and took a wagon ride to the snack drawer and then to his room to eat a snack. It wasn't long after that, that Dr. Ch came in and told us that Levi's counts were at 38! I think we all just set there in shock. How had they dropped from 105 to 38 overnight. It didn't seem possible. We haven't had counts that low since January of 2016. It was crazy! And Scary! So of course with a count that low we were definitely getting an infusion. They brought in his Tylenol and Bennadryl and got that started.

Levi watched the Emoji Movie and "drank" his popcorn. He was in good spirits and enjoying being able to push the buttons on the bed and go up and down.

After the Bennadryl had kicked in they brought up his plasma and got that started. Dr. Ch came back in and we talked about future plans. We have no way of knowing if one infusion will be enough, and from past experience we don't feel it probably will be with a count that low, so we had several options, we could go home after this Infusion, do blood work Wednesday morning and possibly/probably come right back up, or we could stay over in Lebanon again and then come over Wednesday morning to do blood work again here and then head home in the morning if an infusion isn't needed, or do an infusion again. We decided that staying over would be the best plan. I contacted David's House to see if they could get us in for another night.

Levi was doing really well watching his movies. It was lunch time and Jay asked Levi what he wanted to eat, Levi said Pepperoni Pizza so Jay went to Sbarro as well as the cafe. Levi and I cuddled and switched the movie over to Cars. And waited for our lunch to be delivered by Jay! I thought Levi was going to fall asleep until he suddenly had to go pee, and he really had to go pee! It was crazy.

After lunch we told Levi that he needed to lay down to take a nap or else we would have to take a nap at David's House. I climbed in his bed with him and we cuddled. He wasn't overly happy about it, but he sorta did it. We had about 40 minutes left of the infusion plus 90 minutes of waiting post infusion so it would be a good nap for him. He was able to get up from his "nap" 4 times by saying that he had to go potty, and he did actually go each time! But it was a bit of an excuse as well.

Dr. Ch came in with about 10 minutes of the infusion left and we told her that we were for sure staying at David's House overnight. She said that since we were only going to be about 2 minutes away from the hospital there was no need for us to hang out after the infusion. So we stopped making Levi nap, as it didn't make sense.

When the infusion was done Nurse K came back in and said it was our choice if we wanted to leave Levi accessed for tomorrow morning or if we wanted to deaccess him and then reaccess in the morning. We made the choice to deaccess him as it would be just my luck that he would pop the needle out overnight and I didn't need that!  So Nurse K deaccessed him and we were free.

Levi requested to go to the playroom so off we went. He wanted to finish/read again the book that Jay and him had been reading earlier.

Jaye from David's House had responded to my e-mail that of course they had a room for us, and that since Levi had to stay again they would put us back in the space room! Levi was so excited!! And was ready to go! He practically ran down the hallway.

He put his key in the box and said "see you tomorrow, well not you, but your friend"! He is so smart to know that he probably wont get the same key again.

Saying goodbye to his key!

We headed outside to get the elevator up to the yellow floor and there was a huge line for the elevator. Since we weren't in any rush we decided to walk up the stairs. Levi was a trooper up all those floors.

With one infusion done his numbers are hopefully going up. We will still be very cautious tonight as his counts were so low. Hopefully he will sleep more!! and that tomorrow's counts will be better!