January 24 - Infusion #22

January 24 - Infusion #22

We headed over to the hospital and I had a secret surprise for Levi in my bag. Since the last infusion had been rough (allergic reaction we didn't know about!) I wanted to make sure this one went as well as I could make it. So I brought his "LVI cape". When I pulled it out of the bag and showed it to him his WHOLE face lit up like it was Christmas morning! His whole demeanor changes when he has his cape on, it's like he feels like he truly is a super hero and can conquer the whole world. It makes me smile so much!

 When we got to check in and they asked for a name, I said "Levi" and he says "No Mommy, I'm Super Man!" It cracked all of the ladies at registration up and definitely put a smile on their faces. They quickly hurried to find him some super man stickers! Which he proudly shared with his fellas. Not the greatest picture but he set right down on the floor of registration to put a sticker on him, a sticker on owl, and a sticker on turtle! (No fellas were hurt in the stickering processes! However some minor owl fur was lost in the de-stickering process, which was hid from Levi!)

 After we were registered he proudly and confidently walked down the hallway to the Jungle room!

Since his appointment wasn't technically until 10:30 they were ready to work with us, but weren't rushing around. So once we got settled in the room, we went and visited Nurse A to do our first set of vitals and then ran to the playroom for some fun time.

Once Nurse T was ready for us we headed into the room to get accessed and start the bennadryl. Levi likes to mix things up on me so he wanted to sit on the table for access today. He has done it once before and it works, though can get a little tricky!

Waiting for Nurse T to prep everything

The worst part of getting accessed for Levi! Removing the sticker and cream. He HATES that part!

Nurse T lets him help pull the blood out once she has him accessed, he loves getting to help!

Helping flush the port! He likes to push it in! 

Putting Levi's shirt back on. He thought it was hilarious! 

Dr. V had a student doctor with him this week. Not an uncommon thing as it is a teaching hospital. Generally Dr. V will send them in first to do a preliminary exam and then they go back and report their findings to Dr. V who then comes in to check for himself and discuss anything with them they may have missed. This is a process we do not mind doing. Levi on the other hand is NEVER impressed by this. Why you ask?! One would assume because he gets prodded twice and looked all over by someone new. But with Levi, nope, the problem is that we have to turn his movie off twice instead of once! And how dare anyone get in the way of his movie!

The student doctor did everything she could to not make Levi move, including bending over backwards pretty much to look into his ears. Levi has pretty excessive black ear wax (he gets it from me!) so we are often cleaning out his ears. I call it tickling his ears and it makes him giggle and he lets me do it. The other day his ears were excessively full and it was excessively sticky so  I asked him if he had mud in his ears. He said no. So I asked if he was growing potatoes in there. He said no. I said, oh, if you grew potatoes you could make your own french fries. He looked right at me and said, "no french fries Mommy, growing burgers"! So when the student doctor was looking in his ears, he kept asking her if she saw any burgers. But he wasn't talking very well and it kept coming out like boogers. We were all getting a good laugh about it. Needless to say he had neither boogers or burgers in his ears.

After the student doctor left we got Cars 2 (that's right folks, he asked for Cars 2, well he asked for McQueen's other movie, other movies are what he calls sequels, but for the first time in 8 months or so he didn't ask for Planes to be his first movie!!!) started again Levi watched a few minutes and then Dr. V came in to talk to us. We talked about Levi's numbers and how he has been doing. Then we talked about his allergic reaction to the last plasma and what that means. We discussed some possible other options, but nothing that we are really wanting to move to yet. Then we talked about the clinical trial that we are trying to get Levi in to. The company is very interested in Levi but not sure if he will be accepted because of his young age. The company was out last week to see the facilities and meet the doctors. So that is the first step in getting approved! We are still quite a ways out from the next round of trial even happening, but knowing that we are on the short list for it is huge!

Once Dr. V left the plasma got started. When Nurse T and Nurse K came in to get it started they have to do their checks and double checks, reading his bracelet and the plasma bag and the order and both signing off that everything matches. It takes a few minutes to get going. Well after about 30 seconds of this process, Levi had had enough of his movie being blocked by them and he looked right at Nurse T and said "T I can't see McQueen!!" It was quite another round of giggles for all!

Plasma started.

After the plasma had been going for a few minutes Levi started to tell us that he was tired and needed to take a nap. So we go him a pillow and a blanket and turned the lights down. Don't let this adorable picture fool you,he never actually slept. But doesn't he look cute pretending to sleep, including pretending to snore!

Since we weren't actually sleeping we kept sitting up and tossing himself around and somewhat watching his movie. We made it about half way through Cars 2 before Levi asked for "McQueen's real movie" I switched it over to cars which he watched. We never watched Planes! First infusion in FOREVER that Planes wasn't watched!

 After lunch Levi had had enough of sitting in the chair and asked to go to the play room. Since he was being very good we decided to make that happen for him. He is getting better about understanding his line and pole. Not great, but better! As long as there is two of us we will venture into the play room. One adult is on pole duty and the other is on Levi duty. It's tiring, but fun at the same time.

Levi gave me and the baby several check ups to make sure we were ok! 

 Finally his infusion was over and it was time to head back to the room to get de-accessed. Here is Super Levi riding on his pole back to our room!

 Levi's counts today were 220. So a great number for an infusion day! An infusion should bump him much higher so it's great to know he is already starting high. Once everything was done, Levi got his 5 minutes to play in the playroom without a pole and then we were headed home. Levi was over tired at this point and struggling, but didn't actually want to fall asleep. So he fell asleep with 22 miles of the 96 mile drive left!

 Once we got home I knew that he needed more sleep, so Levi and I decided to cuddle on the couch. Sometimes a boy and his Mom just need cuddle time. We both slept for about 2 hours!

Next steps, blood work on Thursday. If all continues to go well his next infusion will be on Valentine's Day.