February 2 - Appointment & Infusion

I am just gonna start this post by saying, Ports are amazing!!! Check out this happy and smiley guy while he gets his blood drawn!

All smiles while the nurse draws his blood.

The morning started with the normal rushing around of appointment days, I swear little Levi's brain knows the days I need him up early and the day's I really wish he would sleep in, and he does the exact opposite. So he was up early! We got dressed and then let him play before heading out for the long drive around 8:15. Our drive was pretty routine, stop for breakfast at McDonald's, stop for a potty break/clean Diaper, and then all the way out to Lebanon.

We got to the CHaD and Levi got checked in. They put cream on his port so that it would go numb and we were off to playing!

Playing doctor at the doctors. Seems fitting.

Levi seemed a little cautious and nervous. He wouldn't settle on any one toy and was very very quiet. We met with Dr. V who talked about how things have been going and then it was time to do the port access. We were all a little nervous as this was the first port access, we all needed this first one to go well. And boy did it go well! Even the nurses said it went amazing. Levi set in my lap and never made a peep. I barely had to hold him at all, and the only struggle he gave me was when I had to turn his head away for the needle poke. He is too young to wear a mask (he will rip them off) and they really don't want them breathing in the port while it's being accessed until it's covered. Trying to keep as many germs away as possible. Here are a few pictures of the port access:

Getting the port area all cleaned

Needle is in. Just like Mommy he wants to watch what they are doing. Can't let his head go yet as it's not covered. The nurse if flushing it. 

Laying down to get the blood to flow into the port cavity without problems. Look at that little grin. It's all covered now, and you can see he is picking at the tape a little bit.  

Then they drew blood from the port and sent it to the lab for numbers. We leave the access in the port in case he needs plasma.

Drawing blood.

At this point we are just waiting, so Levi is back to playing. He seems MUCH happier and more himself. I think he has realized there isn't going to be anything as painful this time as last time. Driving around and running into things, just like his normal self.

While we are waiting for numbers we work on the paperwork for the USS registry. Jay and I both have blood drawn to be sent to Switzerland with Levi's blood for genetic testing. Interesting to know a part of you is going to a country you have never been too. Dr. V also fills out the FMLA paperwork for us, as we are going to be missing a lot of work, and can't afford to lose our jobs.

Counts are back. Levi's platelet count is 184. Technically normal still. The general plan is to do plasma at 150. We talk to Dr. V who feels that his platelets would be at 150 by Thursday Mornings blood draw, so it makes sense to just do plasma while we are already there and his port is already accessed, vs. driving home and then pretty much knowing we will be back on Thursday. Waiting again while the blood bank gathers plasma for him and sends it up.

The plasma comes and we get it started. Plasma infusions take approximately 3 to 3.5 hours. Levi eats lunch and starts watching Sulley (aka Monsters Inc.) at the 15 minute check his blood pressure and temperature are remaining the same as before the infusion started. YAY!! At that point we decide it's time for nap. Levi wasn't overly excited about that plan, but did finally fall asleep.

Sound asleep in the recliner. He's always been a belly sleeper, even with his port! 

45 minutes later Levi is up. UGH. This could be a LONG day. Levi doesn't understand cords and IV poles yet so we can't really go to the play room. But, they have a Curious George movie, so we settle down to watch. Jay has gone down to the lab to donate blood (feeling like he wanted to contribute) so it's just Levi and I.

All cuddled up watching Monkey George.

Finally the infusion is done. The last 20 minutes or so were rough. Levi was very very done sitting and watching TV, was well over tired, and wanted to run around. We bounced between chairs, mommy's arms, daddy's arms. But we made it.

Piglet and Monkey cuddles at the end of the infusion

They removed the access into his port. A super quick and easy process. The only thing Levi doesn't like is when they pull the tape off. They push saline through the line and a small amount of heparin into the port cavity so that the port doesn't clot. A tiny little circle band-aid is all that is needed, and we will take that off this evening. We said good bye to Dr. V, the jungle room, the play room, the car, the nurses, and then finally headed home. We hoped that Levi would sleep on the drive home, but that was not to be the case. It was a LONG drive home. We stopped to get gas, and even piglet and monkey didn't want to be in the car anymore. They decided to try to get the car moving while daddy was pumping gas. Thankfully there little legs are too short. But they did make Levi giggle!

Plan: We are back to blood draws every three days (Monday's and Thursday's) and see what this infusion does. It was 2.5-3 weeks between the last infusions and this one. So we shall see if that is going to be his norm, or if we are looking at more or less frequent then that. After the next infusion and his port is accessed again, as long as it goes as well, then we will start the process of getting a home nurse. We have the numbing cream for his port now, so can stop and do that on the drive, so that we can do the port access as soon as we get to the CHaD from now on.