August 9 - Infusion #13

August 9 - Infusion #13

We barely made it over in time for our 9am appointment. Thankfully clinic is very flexible and would have been more concerned that something was wrong with us if we had been late then the fact that we were late.

Levi wanted to play as soon as we got there and he also wanted to pick out a snack. He picked out gold fish and then was very angry that he couldn't take them to the play room with him (its a very strict no food in playroom rule). We had Nurse K today and Nurse T was on vacation this week. Levi settled into the playroom to play while everything got ready around him. Then it was time to go do work with Nurse A. He did great with his height and weight, and not too bad with his temp, oxygen, and blood pressure. Then it was back to the playroom to play.

Soon it was time to access his port. The access went pretty well and then the Benadryl got started. We put on planes and Levi settled down a little. I thought he might fall asleep for a minute, but that wasn't going to be the case. Dr. V stuck his head in for a minute and asked if we had any immediate concerns, when we said no then he said he would be back later as he needed to perform a procedure up in pain free.

Levi's plasma came up and we got that started.  We continued to watch planes and then Levi needed to go Potty. He rode over on his IV pole and was successful. Jay and Levi headed back to the room for a minute while I got myself a drink. I walked back into the room to Levi squirming and crying "ouch Ouch Ouch... It Scratches" which is his new word for it hurts. I took a quick look at his port and it was indeed not looking right and was getting a big bubble on it, I knew immediately that he had pulled the needle out of his port and the plasma was being pumped under his skin (not dangerous, but I am sure it does sting). I ran and got Nurse K who came right in and looked at it. She attempted  to push the needle back in, but that didn't work so she deaccessed him and we put a whole new needle in. Levi wasn't overly happy about that. I don't know how long the area stays numb for, but he didn't cry, but was definitely unimpressed. Nurse K put a HUGE sticky bandage on the port to hold it in place this time and we got right back to where we were.

Zoning while he watched Planes. 

We shut the lights down after the 15 minute check with the hope that Levi would catch a little nap, but no such luck. I was zoning out holding him, but every time I was almost asleep, he would look at me and say "Mommy!" Once Planes was done we put on Inside Out. Jay had gone and gotten lunch, which Levi looked at, and barely touched. Oh this was a long day. The faster infusion time is nice, but it still takes a long time.

Dr. V stuck his head in again along with a new resident that is working with him. We didn't talk about much. Dr. V looked at Levi and said, "Ok, we will discuss options at the beginning of September". Levi's counts came back at 151 today, so a fairly large drop since Thursday's blood draw. Good thing we were here. Levi has a little head cold/runny nose so I am sure that is contributing to his counts dropping.

Finally the last of the plasma had flown into him and Nurse K came back to deaccess his port. Levi was not impressed about having to take off the huge bandage. Nurse K got the spray and that helped some as it made Levi giggle. Finally it was off. The meds were in and the needle was out. Nurse K had an Abby Cadabby band-aid so that made Levi's day.

Levi asked to play in the playroom for a few minutes before we left which we gladly allowed him to do. I cleaned up the Jungle room while Jay and Levi went and played. Then we were on our way to the car.

Levi didn't sleep great in the car on the way home. He hid under his blanket and finally did fall asleep but it was a long car ride and a short nap.

Next plans: Hoping that his counts go up well with this infusion and then we will be back in three weeks.