April 5 - Infusion #7

April 5 - Infusion #7

We got over to the hospital and got checked in and headed out back. We said hi to everyone. As we were walking in the little boy that we had seen at the lab on Monday was getting his vitals taken. He said hi to Levi and waved. Small world. Just makes me realize even more how many people make the long trek from the seacoast to Lebanon. We got settled in the fish room (which I think is my new favorite). The playroom was still closed (uh-oh, gonna be a LONG day), but they still had the cozy coups out and Levi made himself to home pretty quickly, running around the hallways in the cars, and pushing the dolls in the shopping cart and stroller. Nurse A asked for Levi to sit for his vitals. He did a pretty good job, but it took multiple tries to get his blood pressure and O2 as he didn't want to sit still for very long. Also took a couple of tries to get his weight, they really need to get a digital scale instead of a manual one, kids just don't stand still for that long without touching anything.

Attempt number something at getting his O2. Sitting on his own with Daddy and Nurse A close by.

Then it was time to get his port accessed. Nurse T was doing the stick today. Levi really likes Nurse T and was all smiley and happy. The initial stick went just fine as per usual. The numbing cream did it's job and Levi didn't even feel a thing. The worst part is having to hold his head so he doesn't breath on the opening until they get it covered. He really doesn't like being restrained like that. Then came the fun part, we had to get blood out of his port, a task that should be super easy. But once again his port just doesn't want to give up the blood. We did the blood dance. Arms up, Arms down, one up one down, wiggle, sit up, stand up, lay down, turn your head left, turn your head right. Nothing was working. Finally Nurse T got enough of a return that she felt she could send it down to the lab to get counts. She capped off his port and we were off and running again.

Getting the area properly cleaned before the needle is inserted.

Doing the blood return dance. Levi is not amused! 

Nurse T asked us if we were in any rush, and I said nope. So she wanted to talk to Dr. V about putting TPA into his port. Dr. V agreed and the TPA was administered. TPA is used to break up any fiber or clots that may have formed within the port. The TPA needed to stay in his port for 1 hour and then it would be pulled out, and the hope is that anything "bad" would have been broken up and would be pulled out with the TPA. We were off and playing while the TPA did it's job. There are two baby dolls at the clinic, but Levi really only likes one of them. So we spent a bunch of time running back and forth with the shopping cart and then the stroller, but each time we switched we had to take the doll we liked out and switch her to the other device. It was cute, and kept him occupied. He also kept stopping for snacks.

Drive Drive. 

Giving dolly a ride. 

Dr. V came in to talk to us and to examine Levi. Levi's platelet count is 133 today. :( A pretty serious drop in just 1 day again. We are beginning to question if the two labs are calibrated the same. Dr. V also talked about how he presented Levi's case at a conference of his colleagues last week and that with some discussion with another doctor he would like to change Levi's standing orders to also test his LDH and that possibly this number will be a foreshadow of what may be happening, a drop or rise in platelet count. We didn't see any problem with this, it's a second vial of blood, but since he is already getting stuck its not a big deal. Dr. V looked at Levi and didn't see anything out of the ordinary. We discussed our next appointment. Dr. V is very comfortable with the 3 week schedule and really does not want to waiver from that no matter what numbers are (unless they drop very low very quickly), so that is our plan. Every 3 weeks. Our next two appointments will only be 2.5 weeks as 3 weeks from now we are at camp and Dr. V does not want us to miss any of the camp experience or have any worries. We talked to Dr. V about our issues with Receptionist S and with K and he told us to call whenever we wanted and to get all the information we wanted and that he would discuss their professionalism with them.

After the hour was up we headed back in to hopefully see the magic of the TPA. But the magic wasn't to be had. Nurse T tried with every trick she had but we were unable to pull the TPA back out and none of the crud came with it either. Moving on to the next stage to see what is up with the port. Nurse T and Dr. V as well as Jay and I had a discussion about the next steps, and we determined that it was time to visually see what the port was doing. So we were off to radiology to get a chest x-ray with dye to see the port in action.

Getting a ride to radiology.

The radiology lab was quick and we were right in and right out. Levi did a great job. Jay held him on one side and I held him on the other and he lay perfectly still. :) He got a bear and stickers out of the deal so he was a pretty happy little fella.

Getting his new bear.

Heading back to clinic.

At this point it was about 12:30 and Levi was getting both exhausted and hungry. Jay headed down to get lunch and I stayed in clinic with Levi. Dr. V came back in with his lunch and said that he had just gotten paged which he assumed was the radiologist results. This was no more then 15 minutes after we had left the lab, so was amazing how fast they were on things.

Levi's chest x-ray.

Dr. V, Nurse T, and I stood around looking at the pictures and discussing. To explain the picture a little above, the big black circle is the port itself. The line that extends out the bottom of the port and goes to the right is on the outside of his body and is only there because the port is accessed during the x-ray. The line that comes out of the top of the port and twists to the right before going to the left and ending is the catheter that is inside his vein. The picture clearly shows that the catheter is kinked under his collar bone and that the catheter runs too far down inside his vein, it is far too long for his little body. All of this would explain why we have trouble with blood returns. Dr. V will be discussing with Surgeon Dr C about what he thinks we should do. The port is clearly working for in though so we can complete the infusion as needed. Nurse A headed to the blood bank to collect his FFP. I was doing everything I could to keep Levi awake and not going crazy. Nurse T got down on the floor and played bubbles with him! Man did he have a blast!!

Bubble Time!

Jay got back with the food and Nurse A got back with his plasma at essentially the same time, so we headed into the fish room. Levi picked out the "crazy people" movie again (aka. Inside Out). We set up the movie and his lunch and Nurse T got his plasma going. It was a good joint effort. We found out that Dr. V has ordered the increase of the rate of his infusion since he has been doing so well with them, so instead of 70mL/hr we can go at 100mL/hr! Awesome! We will be giving him the full bag again today as it is 236mL and Dr. V ordered 220mL. A little extra is always better and wont hurt him. So we settled in for the long wait.

Eating lunch.

Getting tired. Relaxing.

Levi desperately needed a nap at this point, but he was fighting it so much.

Half asleep with his cookie in his hand, but refusing to give in.

Any time he thought he was going to fall asleep he would force himself awake. It was painful to watch. Finally I climbed in bed with him and held him until he fell asleep. Only took about 5 minutes of forcing him to be still and not keep himself awake and he was out cold. Jay headed out of the room as he was antsy, so since I was bored, and couldn't move, I decided to take a short nap too.

His pump went off that the infusion was done and Nurse T came in to switch it over to saline in order to flush the line. She noticed that Levi was sleeping and said that we were welcome to stay as long as we wanted even after the infusion was done so that he could sleep. I considered this but at the same time it was getting late and we were all ready to be home.

When Nurse T came in to un-access his port Dr. V came in with her. He had talked to Surgeon Dr. C and they had compared the pictures from today to the pictures taken during surgery, and they do not look anything alike. He is unsure how Levi's catheter has snaked that far down and kinked like that. He believes that Levi needs to have this repaired in order to have his port working better so we will be heading into surgery again soon, hopefully before Levi's next infusion on the 22nd.

Then it was time to head out. Levi grabbed his lunch box and was on his way as soon as we told him he could.

Blowing this popsicle stand!

We thought Levi would sleep in the car on the way home, but he stayed awake and talked and sang the whole way. It was a less stressful drive then we assumed, since we would be hitting Concord at 5:30, but rush hour wasn't bad, and we made it home a little after 6.

Next Steps: Next infusion is on April 22nd, hopefully having surgery before then to repair the catheter in his port, continuing with once or twice weekly blood work but adding an LDH count to the orders.