August 22 - Infusion #32

August 22 - Infusion #32

After our eventful morning we arrived at the hospital a little later then desired, because of this we took the first available parking spot. Levi was a little upset that we didn't go all the way up to purple, but he got over it fairly quickly.

We got checked in and went inside. We turned the corner and the jungle rooms door was closed. Uh Oh! This might not be a great day after all. We talked to Nurse A and she said that we could hang out in the playroom for a little while until the Jungle room emptied or we could go into a room out back. I asked Levi if he wanted to wait or if he wanted to go into a new room out back. He picked the new room out back! I was shocked. So over we headed.

Levi got settled into the room pretty quickly and was very excited that the tv had cable and as soon as we turned it on Puppies came on!! (AKA Paw Patrol!). Dr. V came in with a resident after a few minutes. The resident had been upstairs in pediatrics last month, so we had actually met her during our 24 hours of inpatient. Dr. V wanted us to seriously consider going to a wait and see method instead of scheduled due to Levi's last reaction. Of course since we are here he will be receiving plasma today, but he wants to discuss the future. Levi was oblivious to all the adult talk and just wanted to eat his snacks!

Dr. V left and the resident talked to us for awhile about how Levi has been doing and the future state of things. We talked about his recent bout of belly issues over the past week. She gave us several suggestions. Nurse T came in to get things started. We have added to Levi's pre-medications as he now gets a dose of tylenol and a dose of bennadryl.

After the Resident and Nurse left we discussed what we wanted to do. After lots of discussion about things, we decided that it probably is best to go to a wait and see method. The last reaction was very scary! The less infusions he has the better it will be for his little body, and it wont add stress to his life to have less infusions, only stress to ours. We did discuss that we will probably go back to a twice weekly blood draw as his counts go down but since he loves P so much blood draws are fairly easy at this point!

When Dr. V came back in we discussed with him our decision. He was in complete agreement with everything and very happy that we have decided to go this course of action. To be honest, I think he would have been happy if we had done it 6 months ago. Since there is no way to know what his counts will do (level out, drop, rise, etc) on there own we will be keeping a close eye. If his counts drop below 100 we will be up for an infusion within a day. If we find that we are coming up unplanned every 4 weeks or so, then we will just go back to every 3 weeks scheduled. Also Dr. V will be scheduling an MRI in about a month to get another baseline. Then we can compare that one to the one he had at 18 months to make sure that nothing has happened. And we will do one every year going forward while we are on wait and see to make sure that we are not missing anything.

As per usual Levi was very unaware of this conversation and was just happy to watch his movie and eat his snacks! He has no idea the giant switch in life we have just made and the large amount of stress and worry it adds to his mommy! But if I can take some stress off of his body I will do it!

Everything was on a VERY slow schedule today. As they still have no idea what caused the reaction last time they are taking every additional precaution they can. We waited a full 60 minutes between the end of Bennadryl and the start of plasma today with IV saline the whole time. We have never done that. Levi was doing great!

Counts came back at 266! So a great number. At least I know that we are headed into the wait and see period as high as possible and on a good note.

It was time for Jay to head to get lunch so he headed down to the cafeteria. He hadn't been gone long when a volunteer stopped in and asked if he wanted anything for lunch from the cart. She gave him a gingerale and yogurt and he was excited. I told him this was a perk of going in the big kids room and he seemed happy. Jay came back with lunch and he ate some, not a ton, but some.

A little while later the volunteer came back again with a cart full of dessert this time! She had chocolate ice cream and oreos (plus some other choices)! She gave all of us some and Levi was so excited! He ate almost all his ice cream!

It wasn't much later that Levi's infusion ended. Things had gone seemingly great! Of course they had last time as well. In order to be the most cautious we could we were staying in the hosptial for 90 minutes post infusion. Levi would remain accessed during that time, but not hooked to any line. We were welcome to go anywhere on DHMC property, but not leave. Levi was very excited to go play, and we actually ended up spending the entire 90 minutes in the playroom.

He made a bracelet.

Played some music! 

Took a "Nap" with Daddy

Found popcorn in the snack cupboard during his wagon ride. 

Took the baby on a stroller race around the clinic. 

Played with cars. 

Played with the train. 

Built the entire girl body puzzle by himself!

And played with dinosaurs!

Before we knew it it was 3:00. Levi headed back to his room to get his vitals taken. He was acting normal and all his vital signs came back normal so they decided that we could go home! YAY! We deaccessed Levi's pot and we were out the door. Of course with a stop to pop his popcorn at the microwave and turn his key in to the box.

We got in the car and Levi was so excited to be heading home and even more excited to have popcorn!

Sharing a piece!

We had to stop at the gas station and in the slim chance that Levi might fall asleep we stopped at the Irving right below the hospital. I went in to get drinks for everyone and saw that they had Donatello, Levi's favorite TMNT. Since he had been so good all day I decided to treat him and got him! Levi was so excited!!

He even shared his popcorn with Donatello!

I am so glad that today went well! I don't even care that we wont get home until 5:00 or later! I am just happy knowing that we will have a quiet and stressfree drive home. Levi still talks about "When I got sick in the car we rushed rushed rushed right back to the hospital!" I probably hear that on a daily basis, so knowing that this time we are just headed home is a huge relief.

We are now in wait and see mode. I don't think that will really kick in until the 11th when we should be heading to David's House. Until then life will just be status quo. After then, Life will be a little more stressful, a little more worrisome, a little less carefree. We will be back to having a bag packed all the time and ready to take off at a moments notice!