June 7 - Infusion #42

June 7 - Infusion #42

Once Jay got home and we packed, we were on the road. Since it is Thursday there is no clinic, but Dr. C has arranged for us to have a room in the adult section for the day, and to have Nurse S, as she knows Levi. Not my favorite nurse, but at this point we will make anything work. We had also arranged to call DHMC when we got to exit 18 so that they could alert the blood bank to thaw his plasma, this would help with minimal delay, both for Levi's sake, and for the fact that it is much later in the day then we normally start this whole process.

With a couple of emergency potty stops, a stop at McDonald's for lunch, and an on the drive port cream application we had an eventful drive to say the least. But we made it! Of course Levi requested that we park on purple. We got to the top and he actually wanted to park out in the air part of purple. Since there is no threat of snow I agreed! And then we took the elevator down to floor 4. Spidey Bear was along for the ride today!

We got to registration and got checked in. It went a little strange but I wasn't 100% sure what to expect as things we weird today, so I let it slide. Hindsight is 20/20 and it was strange because the receptionist was tired and totally forgot to tell us where to go since there is no clinic and forgot to give Levi a bracelet. But we made it work. We headed back to clinic and found a nurse there who seemed very confused as to why we were there and then we wandered into the adult section and found the nurse's station and got settled in to our room. Levi was very upset that the playroom was closed! But they park all the poles in the playroom and charge them while clinic is closed, so even if someone had the key to get us into the playroom it wouldn't have been safe for Levi to play in there.

Levi likes the adult section because it has the fancy beds! And he immediately got started with playing with them! Levi and Spidey Bear went for several big rides.

And they were spending time playing with whatever they could get their hands on too.

The other thing that Levi really likes about the adult section is the food cart that comes around. He loves the snack cupboard in the kids section, but the food cart comes around to the adults with sandwiches, salads, and fruit cups. And then later comes back with dessert! The volunteer/candy striper that was working the food cart today was over joyed to have a kid and gave Levi anything and everything he wanted as well as giving Jay and I some stuff as well!

It wasn't long before Nurse S was in to get the Tylenol and Benadryl started. We were not wasting any time today. We knew that his counts were low and that an infusion was necessary so there was no point in waiting around.

Nurse S found us the key to the movies in the teen room so we were able to get some movies that Levi would want to watch. We started out watching Blue Clues Space. One of Levi's favorites.

After Benadryl Levi had spiked a small fever. We were unsure why, as he is now medicated and we hadn't started any plasma yet. Nurse S talked to Dr. C who said to continue on as planned. We pulled labs at this point as well just to double check that nothing crazy was going on. We got his plasma started and settled in.

At the 15 minute vitals check and rate increase Levi's fever had gone back down to normal, so it was either a weird spike, something to do with how he was laying, or a bad read. But all was good. Blues clues ended and Levi wanted his tablet instead of another movie so we settled in with that. It was going to be a long day it seemed. Things were moving quickly, but Levi was just not prepared for this. Usually he has some time to prepare as we come up the night before and go to David's House and have some relaxing time. He was not happy that we had come straight to the hospital and he made it very clear to anyone who asked that he was not happy.

 Levi's counts came back and his platelet count had dropped to 20! Not a great thing in just a few hours. We always see a slight lab difference between WD and DHMC, but that is a large percentage difference. A few minutes after we got those results Dr. C came by to talk to us. She asked if there was anything going on with him, we said no, he seemed fine and we were very shocked by the large drop. She said, well at this point the plan had been for us to discuss what you thought was a good idea, but now the plan is you need to stay over and we will see you in clinic tomorrow. We said that we had expected that and already had a room at David's House for the night. She seemed happy with that. Explained as per usual that if we saw anything off over night not to hesitate to call or go to the ER and that she would examine him in clinic the next day, as really she was in meetings all day today, mostly just popping out of them to deal with Levi as needed.

Levi was getting very restless at this point. And started playing with the table. We put another movie on but that wasn't holding his interest at all. Thankfully we were very close to done, because it would have been a long afternoon if he had been this antsy the whole time.

Finally the infusion was done and we were ready to be done. Nurse S asked if we wanted to stay accessed over night and we said no, that was too much stress and not nice for Levi. We discussed with her that the plan was to head to David's House for the evening. She reiterated that Levi's counts were low and we needed to keep him calm and safe as possible as well as exposing him to as little as possible. We said thank you and headed on our way.

Levi was tired and frustrated at this point. Getting him to go potty and get to the car was like pulling teeth. But we finally managed. We had two grumpy guys in the back seat for the long 2 minute drive to David's House.

Hopefully their moods improve before the night is over or else it will be early bed for everyone tonight!!

We will be back in clinic early tomorrow morning to see what his counts have done over night. Hopefully one more infusion and all will be good, since tomorrow is Friday and Levi's birthday party is on Saturday. He has been looking forward to it for months and I would feel so bad if we had to cancel it because he was sick. Of course, his health comes first, but as a parent I also do everything I possibly can to keep his life as normal as possible which includes trying to not have too many plans change if at all possible!