September 26 - MRI & Dr. V

September 26 - MRI & Dr. V

We got over to the hospital right on time for our 7:00 appointment. We got upstairs and checked into Pain Free. Levi was excited to go to their play alcove and was in great spirits. We had tried to explain to him what an MRI was without scaring him. We had said it was his sleepy test and explained that we would be there when he went to sleep and we would be there when he woke up. He didn't seem phased by it, but I really don't think he had a clue.

We got him changed into the hospital johnny and got checked in. The hardest part of the paperwork that asked the question "Is patient wearing any jewlery or nail polish?" umm... when is the last time he asked for his nails to be painted. Yea I think he probably is it hasn't been that long!

Levi played while we finished the paperwork.

Then we headed into the room with the bed in it. Levi got to play with the fishy lights. They have a cool board where the kids can change the colors in the tube. He had a great time with that.

Nurse T had come up from downstairs to access Levi! Yay! That took a lot of stress off of us as we didn't have to explain the odd procedure and needles that Levi requires and Levi was totally cool with it all because it was Nurse T. She got him accessed while he was able to play with the buttons with his toes! He thought that was the coolest thing ever.

Dr. V had ordered some additional testing to be done today so Nurse T took several tubes of blood and Levi had to pee in a cup!! Which is like the highlight of everything for him. If you can pee in a cup you are cool in his 3 year old brain!

After he peed it was time to go to sleep. Jay and I were both in the room with him. I held him and gave him a hug and told him it would be ok. The meds went in thru his port. It only took about 30 seconds and he was out cold. Always the strangest thing to see! We were given our pager and badges and told it would be about 90 minutes before we would be called back to pain free. Jay and I headed down to the cafe for some breakfast and relaxing and talking.

The 90 minutes went much faster this time then the last time he had an MRI, and way faster then the 2 times hes been in surgery. I think both Jay and I were much more relaxed this time, knowing more what to expect. At about 93 minutes our pager went off. We headed back upstairs and right into pain free. Levi was just starting to come too and man was he ANGRY! He was so confused and disoriented. It was a good 20-30 minutes of "I want this" "no I don't!!" and a lot of "Mommy I want a hug" followed just seconds later by "GET OFF OF ME!" He asked for his tablet to play a game but his little body just wasn't awake enough yet and that frustrated him. He asked for food and a drink. We gave him a popsicle but he didn't really want it. Then a chocolate milk. Then another popsicle (the first one had mostly melted and been thrown away!) It was roll over, up, down, hug, get off of me, tablet, drink, stuff, etc. It was just a nightmare. We changed him back into his PJs thinking that maybe he would be excited about that, and he was for a second he fluffed his head onto his pants a few times but then just got crazy and antsy and out of control again. Finally we decided that maybe a change of scenery would be best so we headed out of pain free and down to the clinic. Maybe getting him where he is used to would make him happier. They asked if we wanted a wheel chair (pain free and clinic are at the complete opposite ends of the hospital from each other, plus on different floors). I thought that might be fun for him so we set him in it and he just lost it! So that was a no go. So he got in Jays arms and we headed out!

He saw that Jay had a banana from breakfast and that quickly became his banana! He was pretty content for a few minutes sitting in daddy's arms with his blanket and banana.

We stopped and saw the stick moose on the walk to clinic. He is obsessed with this thing!!

About 2/3 of the way to clinic Levi tried to leap out of Jay's arms and into mine. So we stopped and switched people. We made it the rest of the way to clinic without incident. We got in to clinic and said hi to everyone. They needed to do Levi's vitals and he set ok for that. The jungle room was busy so we got put in room 11 out back again. Levi was pretty excited. We turned on the TV and Paw Patrol was on so that made him even more excited. He also wanted to get a snack so we got him some crackers and he needed to have the table in the right place so we got that, and then he just kinda chilled.

Dr. V came in to tell us that the preliminary MRI results were in and everything looked good. There were no changes since 18 months. The odd abnormalities that were there at 18 months are still there, but there is not any more of them and they haven't changed or grown, so whatever they are they are staying the same!! So that's good news. 

Then a resident came in to talk to us about Levi for a few minutes. I usually don't mind talking to residents at all, and I know that Levi's case is rare and different so they all want to see him, but today I just wasn't in the mood. Levi still wasn't himself and it had been a stressful morning and I just wanted to cuddle up with my little guy and talk to the actual doctor. I think the resident could somewhat tell that, which I feel bad about, I tried to be as polite as possible and answer his questions, but he didn't stay nearly as long as most and before I knew it Dr. V was back in to see us. 

Levi's labs came back at 175 today so a huge increase from Dover. Of course we are at a different lab and blood work from his port instead of his arm which we tend to always see some differences. Dr. V was very happy to see that his labs are staying in this range. He has a hunch that his counts will level out around 150 and stay there. We shall see. Dr. V said that he wants to see us back every 2 months no matter if he needs an infusion or not. That way they can access his port and make sure that it is staying good for when we do need to use it, and Dr. V can examine him and make sure that we aren't missing anything. So for now we will be back in two months! Before if his counts drop below 100. 

Levi was starting to feel better and wanted to play in the playroom before we got in the car. I said for sure and off we went for him to play! 

After a few minutes it was time to head out. Levi had done the puzzle, played with books, sang a song, and played with the band, so it was time. On the way out Levi wanted his picture with the spinny art so we went upstairs for that.

Then we had to stop and see the moose again! He loves that guy!!

Then we were on our way home! It was very strange to be in Lebanon and not do an infusion. Levi seemed a little confused too about why he didn't get a movie at the hospital or more time to play! But it will be nice to get home. 

Next plans: call if numbers drop and we will be up for immediate infusion, or else we will be back in 2 months. Now that Levi's counts are below 200 we are doing blood work twice a week. Eventually this may change if we see that he really does level out, but for now it is a comfort for me to have his blood work done more often! And he doesn't seem to mind since he gets to pick from the treasure box and gets a donut way more often then he should!