November 15 - Infusion #34

November 15 - Infusion #34

We got over to the hospital and I had promised Levi that we would park on purple today since we hadn't been able to yesterday as we were running late. We even got our parking spot right in front of the purple 9! Levi was super excited.

We got inside and got checked in again and headed out back. Nurse T was not there again and instead it was Nurse S. We did however get our jungle room today so Levi was happy about that. We went in to do our work with Nurse A. We didn't have to do height and weight again as they assume he hasn't changed much since yesterday. Then we went in to the jungle room to get accessed so we could send the blood down to see what his counts had done with one infusion.

We got into the room and I set on the chair to have Levi sit on my lap for access and he had a melt down and said he wanted to sit by himself. I said "You can't sit by yourself Levi, we have Nurse S today and she's the Nurse that gets angry if you kick her" and of course she walked in the door just as I said that. Ugh! It's true, but I didn't mean for her to hear it. Levi climbed in my lap and the access went as awful as ever with Nurse S. She is so slow and she yells at him when he pushes off on her when she is coming at him with a needle. He's three! And she has a needle coming at him, of course he is going to buck at that, she doesn't try to distract him at all or get him to look away, just yells at him! Plus she cleans his port and then starts opening everything and getting supplies, it takes over 5 minutes and the whole time she is like "keep your head up, don't breath on that, I've cleaned it, keep your hands down" again, he's 3! He doesn't have that patience for that, you gotta be quicker then that! Finally he was accessed and his shirt was back on. Levi gave her a dirty look! And then we headed to the play room to play.

We had lots of time to play while the lab had his blood. We made a tower, played with the blocks in the truck, played doctor, read books, bought money, played garage, ran around with the baby, played with the action figures, had a band, pretty much we played with every toy in there.

At one point during the process of playing I saw that Nurse A was sitting alone so I went to ask her about Nurse T, expecting her to tell me that she was on vacation or something. But she hedged and hodded and finally worded it with "She doesn't work in this department anymore" with that look of something went on, but I can't tell you what. I was shocked! Nurse T is Levi's favorite nurse and we will definitely miss her! (Nurse T if you read this, send me a PM we would love to stay in touch!)

After about 90 minutes Dr. Ch came in with Levi's counts. They were at 70. A nice increase, but not enough. We talked for a few minutes and looked at past results (thankfully we graph everything and keep it on google drive so can easily pull it up at any point) and decided that yes another infusion was definitely needed. We have a feeling that two infusions will probably make him go up high, but that is safer then being low. We discussed that we could head home, do blood work again tomorrow and possibly head back up tomorrow for another emergency infusion, but that just didn't seem to make sense. We are already here, lets just do it now. Dr. Ch agreed and said that was what she was leaning towards as well, but wanted our opinion/thoughts. I love that the doctors here include us in all the decisions and thoughts. She put in the orders and we started to get things going.

Nurse S came into the playroom to get his bennadryl started and to give him the tylenol. She always does the Bennadryl differently then any other nurse, it's always weird. Instead of having the syringe only have a tiny amount of Bennadryl in it and then flushing the line with a bag of saline, she mixes the syringe with Bennadryl and saline. Then she always has trouble with the machine and how to get it to work. She struggled with it, but did finally get it going. Then Levi wanted to pick out a snack and head to our room for movies.

I asked him what movies he wanted to watch and he wanted a repeat of yesterday so we started with The Emoji movie and some mini striped cookies. His plasma came up soon after that and we got it started. He wanted a warm blankie to wrap up in and cuddled into the chair for a long day ahead.

Soon it was lunch time. Levi had left overs from the restaurant last night so we warmed those up for him. I went to the cafeteria to get myself some lunch and some fruit and cookies for Levi to go with his mac and cheese. He didn't eat great, but did pick at things.

After the movie he asked for some tablet time so we let him play with his tablet. He does not sit still ever even with his tablet, so in this picture you can see him rolling around like a crazy man. It's a full time job to make sure he doesn't get tangled in his plasma line or his head phone cord, and I usually just end up giving up on the blanket getting tangled, and let that happen and straighten it out when he asks me to.

Finally his infusion was done! Dr. Ch was fine with us just going home after and not hanging out since he has been doing fine, and we only get O blood now. She came in to talk to us for awhile about our next plans. We decided to do wait and see again since it had been 3 months and we were hoping to be able to go that long again. We talked about the expectation that if it drops so low we should plan on it being a two day afair, and that possibly if its really low on a Monday we will bring him right up on Monday and not wait until Tuesday and let it drop even further, but that will depend on the availability in the CHaD because their is no clinic on Monday. We were pretty happy with the decision and so was Dr. Ch. We discussed going back to every 3 weeks or every 4 weeks but there really is no magic number and that hindsight will always be our best information. A tough pill to swallow as a parent but its the only one we can!

Levi wanted to go off to the playroom before we left so he took off. There was a little boy in there playing and Levi and him played playdough together quite nicely. Here are Levi's creations:

Levi did not want to go after his few minutes of playtime, so it was quite difficult to get him out of the playroom. But we did finally succeed. And we headed out.

He was grumpy about leaving even after getting all the puppy stickers, and actually just stopped walking and pouted about half way down the hallway. You would think a kid who has been here for 2 days would be excited to go home, but not Levi. He wanted to stay and play.

Finally we got to the exit and he put his key in the box and we were out of there! 

Hoping these two infusions will boost him enough for awhile. We wont do blood work until Friday in order to give the infusions several days to work. Hopefully they will work and we wont be back for another infusion for 3 months or more again!