February 26 - Infusion #5

February 26 - Infusion #5

The morning started out a little sleepy and a little early by Levi, but the day went quite well. It was the first time that we were putting the numbing cream on his port, so there was a little learning curve there on how much to use and how to get the plastic band aid sticky thing to work. But we got it. I definitely think we will put a little more on next time, but overall it worked fine.

We got over to the hospital and checked in. They got us right out back. And we settled into the jungle room again. They did height and weight again, today he was 30.5 pounds and 34.25 inches. The science of a growing and shrinking toddler! HEHE :) Then we went back to our room to access the port. That went pretty well today. Not as well as last time. More numbing cream will be good. And it didn't want to give blood very well. But we figured out the trick with him turning his head and laying down with his arm up. They said tricks like that are good to know as it all depends on how the line is sitting in the vein.

The nurse prepping everything. 

Levi chilling out

Once the port was accessed they sent blood down for another CBC and we waited for the plasma to come up from the blood bank. Levi played in the playroom and we tried to get him to run around as much as possible. But kids don't seem to understand that they wont be able to run around soon, so he wanted to sit and color and ride in the wagon. He did play and ride in the car, so at least he got out some energy.

Riding around the halls. 

Coloring with markers. :) 

"VROOM VROOM" Is what he was yelling down the hallway

His platelet count came back at 153 today so I am glad we stayed over and are running plasma today. If it dropped 27 points over night who knows what it would have been by Monday's blood draw. We met with Dr. V and discussed the future plan as well as today's plan.

Then it was time to start the infusion. Jay went down to the cafe to get breakfast and Levi and I headed to the jungle room. They did another vital check and all the paperwork and then hooked the plasma up to his line and he screamed!! They immediately stopped the plasma and we lifted his shirt. The little bugger had partially pulled his needle out. So it was out of the port, but not out of his skin. This sent the first few drops of plasma into his chest tissue. It wasn't enough to be dangerous, but I am sure it hurt a bunch. We got the needle back into the port and taped it up even better this time. We started the infusion again and all was good. We taped and safety pinned the line to his shirt like usual so if he pulls on it it should pull on his shirt long before it would pull on the port again.

Infusion Started.

Daddy came back with breakfast and we ate as a family before he headed back to David's House to check us out.

Breakfast while watching Curious George. 

Levi and I watched Curious George and Doc McStuffins and laid on his new nap mat.

Laying down.

Daddy came back and Levi was getting very restless so we decided that we would attempt a trip to the play room with his IV pole. We figured with two adults we should be able to handle it. We would have one adult with Levi and one adult on the pole. Levi did great getting down the hall way. He held onto the pole and pulled it behind him. Hmm... Maybe this will go better then we thought.

First trip out with the pole. 

The walk went great. And when we got to the playroom it went great for a few minutes. He played with the white board markers and colored, and then stood and played with bubbles (ie. ate them).

Yummy bubbles. 

But then he got bored of being in one place so he wanted to run run run. This caused some issues. Another little girl also came into the play room and that caused a few issues because Levi didn't understand where his line was versus where he was versus where the little girl was. But we made it!

Then we got Levi to settle down with a few books and Mommy and Daddy took turns reading. We even kept up with this weeks lesson/book/theme at daycare by reading "If you give a Mouse a Cookie" and "If you give a Cat a Cupcake".

Reading with Mommy. 

Reading with Daddy. 

The pump was telling us we only had a few minutes left so we got Levi to head back to the Jungle room and we put on Elmo. The walk back went well again. He held on to the pole and pulled it behind him.

Pulling his pole.

The pump went off and there was still a lot in the line. Levi gets 200mL and the bag said that it had 202mL in it so we figured they would switch over to saline to push the line clear. The nurse came in and shut everything off. We talked to her about this and learned that the amount on the bag is often very inaccurate. That the volume is computed based off of weight, and that the weight differs greatly from scale to scale at a donation center as well as a persons blood cells. And that they nurses have to fully rely on the pump at the IV to determine how much to give him. This was definitely news to us as we figured it would be a better science then that when filling the bags.

When it was done we removed the plasma and then flushed his port. They then need to get a blood return before they can put the heparin in to the port. His port did not want to give any blood. We tried laying down and sitting up, Finally it came. We put the heparin in, a tiny band aid on and we were out the door.

From door to door we were there for 5 hours. When we got in the car Levi asked for his apple. He took a few bites before falling asleep before we were more then 10 minutes away from the hospital.

Infusions are exhausting!

Future Plan: With 2 cycles under our belts now, Dr. V feels pretty confident that we are on a 3 week schedule. Going forward we will be scheduling infusions every 3 weeks on Tuesdays and we are dropping blood draws from twice per week to once per week for the first 2 weeks and then twice per week for the third week before an infusion. This time we are going to go 3.5 weeks to get us from a Friday to a Tuesday. And if we feel anything is off between then we can get the extra blood work if we want and can always call Dr. V with our concerns.