March 15 - Infusion #6

March 15 - Infusion #6

This morning started out as a fairly normal morning. Levi actually slept in at David's House, and we had to wake him up! He was a little cranky, but not too bad. We put the numbing cream on his port and made sure to layer it on pretty thick, of course in the 2 seconds between putting down the cream container and picking up the plastic band-aid cover Levi decided to stick his fingers in it. Take 2 went much better and we got the cover on.

We drove across the street to the hospital and got checked in. We walked out back and saw that they too were doing construction. Uh Oh, the play room is completely closed. This could end up being a VERY long day! The had pulled a few things out and so Levi was playing in the cozy coupes and running around the halls.

Drive Drive!

We did the first of 4 vital checks, and Levi was such a big boy. He set in the chair all by himself!! This is the first time he hasn't set in Mommy's lap! Piglet came along too! And notice the socks have Marshall on them! (That was the compromise I could find, since I refuse to pay $20 for 6 pairs of socks just so he can get the Everest socks).

First Vitals Check

Next it was time to meet with Dr. V. Levi took his gold fish with him, but he set still while Dr. V checked him out. He did tell him that his stethoscope was "Coldy cold!" He wasn't too impressed about having his pants pulled up so Dr. V could check for bruising.

Dr. V examining Levi

I stayed in and talked to Dr. V for a few minutes while Levi went back to play. I learned that he went to RPI too!! YAY!! We also talked about some medications that might come available for Levi, however they are realistically still 10 years out as they are still in clinical trials, and are not approved for kids at all yet, and would also need approval to be used for off label use. But at least there is something out there. The medications would not remove the need for plasma infusions, but they should help to spread the infusions out.

Then it was time for Levi's port to be accessed. Nurse T came in to do the access. For the first time ever Levi set in Daddy's lap! (He is growing up so much this trip!) The port access went well until it was time to get blood out. Like usual, the port flushes great, but it just doesn't want to give blood. We did our normal dance (arms up, turn head, lay down, etc) and finally got enough for the platelet count to be run by the lab. We think that the line in his vein must be running right along the side of the vein since his are so tiny, and that it gets suctioned to the edge of the vein when he is in certain positions and we are trying to pull out, but that anything going in is fine.

Getting the port all clean for access. 

Blood draw dance! 

The plasma was ready early! So we got the infusion started right away after set 2 of vitals.

Infusion started

Daddy headed down to get breakfast. The nurses came in at the 10 minute mark for the third set of vitals. Levi was watching Inside Out and was very unimpressed that the nurses wanted to stand in front of him to check that everything was working right, because they were blocking his view. There was also a minor incident of falling out of the chair, I think someone is slowing learning that standing in chairs just doesn't end well. Finally it was food time!

Eating breakfast and watching Inside Out.

Nurse T came back in with the platelet count result. 83! Umm.. What?!?! 83! It was 188 23 hours earlier. Thank goodness we made the call we made to come for an infusion, I can only imagine how low it would have been by Thursday. I think we would have found ourselves admitted on an emergency basis! And that's scary! And dangerous for Levi! Dr. V came back in and had his look of defeat that I have only seen on him two other times. He is such a strong doctor and knowledgeable and when he has that look I know we are back at square one with figuring things out. He agreed with us that there was no indicators that it had dropped that low. He has no bruising, no cold, no nothing! It's frustrating!

Daddy headed to get our stuff from David's House and get us checked out and Levi and I settled in for some TV and Potty time. His watch went off every hour, and he did GREAT! He would hang right on to his pole and push it to the bathroom, go potty, and then push it back!

Laying down to watch TV.

Cuddling with Monkey and watching some Doc McStuffins

Nearing the end of the infusion Levi was getting restless so we settled down with some books.

Putting the band-aids in his new book from his Aunt's Friend Mandy and her son Jaxon. Thanks! He loves it!

And then we let him play with the iPad to keep him entertained. He is doing really well with the disney puzzles.

Puzzle time

Because his numbers were so low we gave him the entire bag of plasma instead of just 200mL, so he got 216mL. The infusion took a little longer because of this, but was well worth it!

The infusion was finally done! We packed up our room. Waved goodbye to Dr. V and Nurse T and headed out! Levi wanted to ride the elevators so we did! Then we settled in for the long ride. We were headed to Laconia on the way home to play at the Condo. I think Levi was overly excited because he stayed awake for WAY too much of the drive.

Still awake! Go to sleep!

After about 45 minutes Levi finally fell asleep in the car!

Sound asleep. Piglet getting a cuddle.

Another successful infusion behind us. Lets see how long this one lasts, and hope that blood work on Thursday shows a big increase!