May 17 - Infusion #9

May 17 - Infusion #9

We got to the hospital and got downstairs to check in. Levi was a little crazy man. The play room is still closed but he has gotten used to that, and was fine with just the toys in the hall way. He was running up and down the hall with the Cozy Coupe and the baby doll. He had the place to himself as he was the only patient scheduled for the morning. So we let him be a little crazier then normal.

He got vitals with Nurse A. That went about as well as always. He really doesn't like having to sit still for his blood pressure and oxygen monitors. And he gets very angry if you try to hold his arm. We were assigned the Jungle room again, and Levi put his stuff in the room. Nurse K told us that Dr. V wanted to talk to us before accessing Levi's port, so we settled in his room for that.

Dr. V can into the room and talked to Levi about how he was feeling and how things had been going. Then he set down to talk to us. He wanted to discuss Levi's treatment plan. At this point we are infusing every 3 weeks no matter what his numbers are. Dr. V wanted to discuss with us if we thought this was a good idea to continue, or if we wanted to go to a more "lets see how things go" attitude and just watch numbers and only come for an infusion when needed. We discussed with him the stress of this and what the benefit was. He told us that the only real benefit is that it reduces the amount of times he gets infused, which would minimize the potential allergic reactions he could have. We once again discussed other medical options if he continues to have reactions to the infusions. Options such as a medical grade plasma, which is essentially a bunch of people's plasma all mixed together and tested more rigorously then each individual persons plasma is. Or Factor 8, which is an off label use, so we would have to get it approved by the insurance. After discussing with him, both Dr. V and Jay and I felt that the best course of action was to stick to our current plan. It took the guess work out of his infusions as well as limited the risk of his counts dropping dangerously low. He said that we would revisit the conversation after another allergic reaction occurs or when Levi gets older and can more reliably tell us how he is feeling.

Nurse T then came in to access his port and get the party started. Port access went great as per usual. He was a little fussy being held for the needle to go in, but otherwise was great. And the port continues to work wonderfully. Blood return is easy peasy!

Waiting in the chair for the stick. 

Levi got his first dose of pre-medication Benadryl with this infusion. He got 0.5mg/kg. This is a half dose and allows us to hold on to the other half dose in case a reaction occurs and we need to push it immediately. It goes in through his port and starts working fairly quickly. We can not start the infusion until it has begun to work. Nurse T said that she wanted to wait about 30 minutes, but was really looking for him to get over being fussy and move on to just being kinda spacey. A half dose would not knock him out the way that a full dose does, but he would be a little out of it.

During the wait we headed over to the playroom where "Flashes of Hope" was doing family photographs. As we didn't know this was happening we all just had on t-shirts and hoodies, but that's ok. A picture is a picture. Levi was very cranky during the pictures, so I am not sure how well they will come out, but hopefully they will be ok. We should get them in about 6 weeks.

Levi was a crank bucket! Lots and Lots of no's and yelling. He didn't want anything. The Benadryl was definitely starting to work. It was making him feel a little loopy, but not enough to make him sleepy, but he knew he didn't feel right either. After about 25 minutes, he got so that he was just blah. We put on a movie and he just set and watched and stared off into space. At this point we could start the plasma. Today's plasma is AB (Levi is O+), this isn't the first time that he has gotten AB, but it does mean that they did not have any O+ in the building in the size container that Levi needs, so please continue to give blood whenever you can! :)

Nurse A trying to get vitals again before the plasma starts

Nurse T gave Levi the thermometer to play with.

Levi just chilling with Daddy and watching some TV.

We were all a little cautious this time, so we started the infusion a little slower then usual. At the 15 minute check everything was still looking good, but of course it was last time too. We decided to bump the infusion up to the 100ml/hr that we usually run it at, but the nurses were definitely around much more then normal and making sure that Levi was doing well. We watched movies and hung out. Levi got hungry so daddy headed down for some lunch and we all just chilled in the room.

Levi's blood work came back at 205 today, so still a very good number. But we are still all happy to be bumping it up a little higher.

With about 20 minutes left, Levi was starting to get very fussy so we decided that a change of scenery was necessary. We headed out into the hallway with Levi's pole. He did pretty well walking around with it, and even learned that he could still get in the Cozy Coupe as long as daddy stayed close behind with the pole.

Driving the car down the hallway.

Riding in the Cozy Coupe, with daddy driving the pole behind. 

"Look Mommy, I hid my shoes"

As the infusion was winding down we talked to Nurse T about a few things. Namely a better way to get ahold of them for non-emergency questions. Receptionist S doesn't like to put us through to anyone and it can be very stressful. We also asked about a list of over the counter medications that Levi can have, and she said there isn't a standard one, but we can always call. We discussed how always calling wasn't really an option and we ended up walking out with Dr. V's e-mail address, and the OK to use it. So that is another nice communication tool.

The infusion was finally done and we headed on our way. We waved goodbye to Nurse T, Nurse K, and Nurse A. Put away all of the things we had borrowed. We stopped at the entrance and dropped of our badge and then we were outta there.

Returning his badge. 

"Let's Go Daddy!"

Levi was asleep in the car before we were even on the highway.

Levi woke up on the way home a little after Concord. So he took a fairly short nap, but short is better then none at all. I needed a drink so we stopped at the gas station in Barrington and Levi "conned" me into getting him an ice cream. ("Ice Cream Please Mommy" is the same thing as conning right?!?!) I think he enjoyed his ice cream. This is what he looked like when we got home:

The first bite.

Small bites!

The after effect. Showing me his hands. Look at his car seat buckle too!

Next Plans: We will do blood work again on Thursday and another infusion in 3 weeks. No reaction to this plasma, so that is good. Once he has had a reaction he is much more likely to get another, so to know that he did so well this time, is great!