June 7 - Infusion #10

June 7 - Infusion #10

We got over to the hospital and got checked in. Levi walked out back and greeted Nurse K and Nurse T with a big "Hi!" We got settled into the jungle room and Levi was excited to start playing. Nurse A was ready for us do vital checks though, so we had to do work first. Levi wanted nothing to do with Vital checks today. He did height and weight great, and temp was good too. But blood pressure and O2 was a nightmare. He would not sit still and just wanted to rip off the cuff and sensor. We finally got values that seemed mostly accurate and we let it go. Levi was off and running to the play room, Which was finally done!!!

I love that they give the kids actual medical supplies to play with. It makes what they are going through less scary when they can put it into their play. Levi took the baby dolls blood several times, always making sure to "Coldy cold" and "softy soft" (aka rub the alcohol pad on and then dry with a cotton ball).

Dr. V came in to talk to us about everything. The biggest discussion was that once again Levi's numbers fell low on Thursday and then spiked back up on Monday before his appointment. It's very strange that that happens and none of us are sure why. He looked at Levi's legs, which are covered in bruises. He seemed a little concerned by it, but not overly so. He listened to Levi and asked him how he was feeling. I like that even though Levi is only 2 the doctors and nurses listen to him. They may look to us for confirmation and more in depth questions, but they listen to what he has to say as well. Dr. V also notices the small details. He noticed that Levi's toe nails were no longer yellow and were now pink. It's just nice to know that even though we only see him every 3 weeks Dr. V really cares about Levi!

Next it was time to access Levi's port and get a blood sample. We headed back to our room and Nurse K was ready for the access. The access went great as per usual now! She put a little extra padding on over the tap and a stronger bandage to make sure that Levi definitely couldn't pull it out. She let Levi help flush his port, he pushed on the syringe! She also let him help draw the blood out. Levi got very excited by this.

Then it was time to administer the Benadryl. This is my least favorite part of the new system. Levi does not do well with the Benadryl and it's just not fun! The beginning of it is fine, it's after about 25 minutes Levi gets MAD! Like physically angry and somewhat violent/aggressive. Not my favorite thing! Levi still wanted to play so we took his pole to the play room. He did fairly well with this. Not great, but he is only 2, but for the most part he stayed close to it. He likes to push it.

The nurses are so adaptable! Nurse K was willing to start his Benadryl while we were in the play room and Nurse T switched it from Benadryl to Saline in the hall way while we were walking around in the wagon. They are so great!

Then his red bag came up from the lab and it was time to get settled in the room. This is also the point that Levi starts to get super angry, as its been about 25 minutes since the Benadryl. Levi would not settle in his room no matter what we did. Jay had found The Good Dinosaur to watch, but Levi was just screaming and screaming that he wanted Planes and wouldn't settle for anything else. Jay had attempted to find it but was unsuccessful. Levi was sitting in my lap and just thrashing and thrashing. He head butted me harder then he has in a long time and just was overly angry. Nurse T then found Planes and Levi's world was better. We put the movie on and got his plasma started. We were starting at the 75mL/hr and then would be upping it to 100mL/hr as long as the 15 minute check went well. Levi was receiving A+ plasma, a different type then he has ever received so we were all hoping that things would go smoothly. At the 15 minute check things were good and Levi had settled down and was watching planes so we upped the plasma. It wasn't much longer then that that both Levi and I fell asleep.

It was some nice Mommy and Levi cuddles! Planes ended and that woke me up with the repetitive credits music. I opened my eyes and realized that Jay was gone. I moved slightly and that woke Levi up. :( A few minutes later Jay showed up with lunch. At first Levi wanted nothing to do with lunch, he just kept curling around in my lap for cuddles. He was definitely still tired. But eventually he wanted lunch and he enjoyed his hot dog and fruit. His infusion was getting to the point of being done and Levi wanted the chair to himself, so we let him have it.

Finally the infusion was done and we took the access to his port out and started to clean up to head out. Nurse K let Levi help again and that made him super happy! Dr. V came in to talk to us about the next plans. We would be back in 3 weeks unless something changed. Levi's count for today was 237.

We said goodbye to everyone and headed home. Levi slept in the car for about 20 minutes (if that) and watched a movie the rest of the time.