August 30 - Infusion #14

August 30 - Infusion #14

The morning started like all other infusions. We headed over to the hospital. Levi tried to guess what color we would be parking on, and like always he guessed blue (I don't think we have ever parked on blue!) and then we went into the hospital. We got checked in. Levi asked for his key and proudly wore it! Usually he puts it on Mommy's shirt. And then we headed out back. He walked over and said hi to Nurse A, Nurse K, and Nurse T. We were directed to the jungle room per normal and we put our stuff down.

Nurse A was on point this morning and ready for vitals as soon as we got our stuff set down, so in we went to the vitals room.

We always try the reusable o2 sensor (the gray thing he has his finger in) but he finds it way too exciting to play with it to let it do its job so we always end up using a sticky disposable one. Someday he may leave it on! :) Otherwise vitals went fairly well!

We were off and running to the playroom.

For several months now it had been the plan to have a discussion with Dr. V in September about future plans. And since its the last day of August we had that discussion today. I was going to request for a Child Life Specialist to watch Levi during the discussion so we could have a good adult talk, but Dr. V surprised me and followed us to the room when we were headed to get accessed. Usually he doesn't make rounds until later in the visit. He started with a check of Levi who looked great. He seems to always look good at appointments and then is covered in bruises on Wednesday, it's slightly frustrating! He is doing much better with opening his mouth to see in, and then Dr. V and Levi had a funny discussion about what was in Levi's ears while he checked them. Dr. V said a giraffe, Levi said an elephant. It was comical! Dr. V really is great with the little kids! After the physical exam we started talking. Levi was being a little crazy man. He always is before being accessed. I think it's a little bit of anxiety, of knowing what is coming but not quite sure, thinking it might hurt, not wanting the feeling of the Benadryl, just a little bit of everything. Nurse K nicely took Levi to the playroom and got him stickers so that we could have an adult conversation. It was so nice of her and she did it completely on her own without being asked. So Thanks!!! :)

The discussion went well. We talked about some other medical options that we have learned are available (Koate being one of them) as well as just going to a "wait and see" method, with pulling regular labs and only doing plasma when necessary, we also talked about going to 4 weeks instead of 3. Dr. V was very open with us about everything. He read us several e-mail conversations he had had with doctors back in the January/February time frame that talked about options they had used. All seemed like they were partial to Plasma infusions on a regular basis at this point. We also talked about how Levi had just begun Nursery School and would now be exposed to 21 other kids and a whole new set of germs. In the end we decided that we would stick with our 3 week schedule for infusions and re-discuss in the new year. He said in the mean time he would reach out to Switzerland again about Levi's case as well as discuss with several doctors who have patients both using Koate and Plasma and get some other recommendations. We were all very happy with this decision. It's really nice to feel involved in your child's medical needs, and to know that your feelings are being heard by your child's doctor. We also, once again, discussed K and her inability to get us lab results in any sort of timely fashion. Dr. V was completely on board with adding our fax number to the lab slip so that we should receive the lab results at the same time that his office does!! Awesome! That means we should have the results within 30 minutes of the blood draw (its a stat lrab!)

Finally it was time for Levi to be accessed. The access went ok. Levi was very very squirmy. He wrapped himself around Nurse K's arm as she was trying to put the needle in his port, and put his hand over the port, which resulted in us having to start over. It has to be a sterile environment, so as soon as he touched it we had to start over! He hasn't been doing great with needles lately, not 100% sure why. Finally the port was accessed and the Benadryl was started. We settled in with Planes and a cuddle!

Levi was being silly with the Selfies today!

The Benadryl ran out and we switched over to Saline to flush the line. His Plasma was ready and Nurse A went on the long trek to the blood bank to pick it up for us! We got the plasma started and headed to the playroom to play. We haven't done this with his pole for awhile, but he seemed very sleepy and it's sooo frustrating when he falls asleep during the first 15 minutes of his infusion, and then wakes up during the 15 minute vital and hives check and thats all the nap he takes. So we figured we would let him play for those 15 minutes today. He did really well in the playroom. Staying fairly close to his pole, and even telling me at one point "I go over there now" and telling me where he wanted his pole so he could play with a certain toy!

Riding to the play room!

Getting food out of the fridge!

Grilling his watermelon! (EWW!)

After the 15 minute vitals check we went back to the room to watch Planes. He was quiet, I thought he was asleep, but no, he was just really into watching planes! When planes ended he started getting fussy that he was hungry and that he wanted the Crazy People. Thankfully that is the other movie Jay had grabbed (we always watch Planes and then we generally alternate between Cars and Crazy People (aka Inside Out)). Jay put the movie on and then headed down to get Lunch. Jay hadn't been out of the room more then a minute when Levi asked where Daddy was. I told him he went to get lunch and Levi flung himself backwards on my lap and screamed! "I want to go with him! I want Daddy!" I was taken aback. He has been so quiet all appointment and now this! And he has been so all about Mommy lately that he generally doesn't even notice when Daddy leaves. I tried to comfort him, when he started saying "Ouch, It scratches, Ouch". Nurse A came in and asked what was going on. I said I wasn't sure. Nurse K came in to take a look at his port, and sure enough he had pulled the needle out of his port again and the plasma was going under his skin. Second infusion in a row he has done this! So we had to completely access him again. Nurse K decided that we should put in a taller needle that he hopefully wouldn't be able to push out as easily! And a HUGE super sticky bandage to keep it covered! He wasn't happy about this turn of events. Thankfully Nurse A came in to help me hold him since Jay was still down getting lunch. We got the infusion going again, hoping that everything would go fairly status quo from here on out.

Jay got back with lunch, which Levi barely touched. He asked to go potty and play, and we said fine! Nurse K wanted to take a look at his port on the way to the playroom to make sure it was staying in and all looked fine.

Levi played for awhile in the playroom!

We went back to the room to finish the infusion and the crazy people!

Jay at the infusion.

Finally it was all done! We cleaned up the room, Levi got his last few minutes of playroom play before we got in the car for the two hour ride home. He was alseep within about 20 minutes of being in the car, and slept most of the way home.

Levi's counts had been 190 at the infusion, so still very good! Hopefully this infusion will bump them even higher!

Plan: Back in 3 weeks for another infusion. Blood work on Thursday's until then, and Monday's if need be!