October 11 - Infusion #17

October 11 - Infusion #17

This morning started out like any other infusion morning. Levi was a little anxious and crazy man when we got to the hospital. He has started acting like this until his port is accessed. Once he is accessed then he settles right down and life is good.

We got checked in and got his vitals taken. Levi wanted to go to the playroom immediately (like usual) and we were off and running there as soon as I told him that he could. He found the trains and wanted Grammie to sit and play with him.

Then it was time to access his port so we went into the Jungle room. The access went ok, though not the greatest we have ever had. He didn't want to sit still with me after the port access was done and the Benadryl was started to he climbed up in Grammies lap and rocked while we watched Planes.

Dr. V pocked his head in to ask how we were doing, but said that he would be in and out today as he was dealing with an acute episode/crisis with another patient. About 30 seconds after we started talking he was off for the other patient. He had put in orders for Levi's treatment to proceed as usual however.

The nurse came in with Levi's plasma and got it started. Dr. V came back in and we talked about Levi's weekend, which thankfully had been uneventful and fun. Levi's counts had come back at 100, so no real change from Friday!! Yay! We had left Planes running while we were talking to Dr. V. At that point Levi had climbed into the big black chair all by himself. Dr. V had brought in some e-mails that he had received from some colleges in Switzerland that he was discussing our case with about the strange gene that I have and the fact that it has been seen in 3 other cases, Levi makes 4. Sadly most of those cases have passed away, but one little girl is still doing well in Europe. They asked what our family background was as they have never seen this specific mutation outside of a fairly small area in Europe. Our family history has no descendants from there though. As Dr. V and I were talking the room seemed to grow quieter. All the sudden Dr. V looked up and I turned around and this is what we found.

Levi was sound asleep!! We finished our conversation and Dr. V left. We got Levi a blanket and turned the lights out. The infusion had not yet been going for 15 minutes so I was afraid that the 15 minute vitals check would wake Levi up (as it usually does) and we would have a cranky boy on our hands for the next 3 hours. But Dr. V permitted the vitals check to be skipped, and Levi slept for the entire infusion!! Mom and I set and talked quietly and relaxed. It was the easiest infusion that we had had in a LONG time!

Levi woke up with about 20 minutes left and was hungry and thirsty. We got him a snack and a drink and kept him calm by putting Planes back on, which we never finished!

The infusion was done and we headed on our way! Hoping that this infusion would work like it's supposed to and we would not be back at the end of the week!

**Thanks again for coming with me Mom! It was definitely very nice to have you there and to get to spend the time together! And Levi Loves showing Grammie the trains and his place!**