June 8 - Infusion #43

June 8 - Infusion #43

We got over to the hospital and as per usual Levi requested that we park on purple. We were a little early for our appointment as we were hoping to get done a little early and home to prep for the weekend, or to make the call that the party wasn't happening and start contacting Levi's friends. Levi was very tired and a little blah this morning. I think his anxiety was acting up a little since we had been in the adult side yesterday and he wasn't quite sure what today was going to hold. We got checked in and headed out back.

Since it was Friday it was the other Nurse A. We haven't seen her in quite awhile and Levi was a little confused, but he did really well for her and got all of his work done on the first try, with only having to remind him to put spidey bear down for weight, because we don't want to know how much he weights, only how much Levi weights.

Levi got to pick his room and immediately picked the jungle room. He was pretty excited to get the jungle. We went right in to get accessed and get the process started. It was a rougher access then sometimes, which was somewhat shocking since we had Nurse K who he has a great relationship with. But we sometimes run into access troubles on the second day. Maybe when he gets older we will make the choice of keeping him accessed overnight instead of removing it, but for now it's not safe in his car seat and he is just too crazy with it.

Nurse K is so great with him and lets him help with every step that he can. Here he is flushing his own port.

Then she had brought in a red safety pin and Levi asked her if she had any green ones. Instead of just brushing him off, she walked him down to the nurses station, let him pick out which shade of green safety safety pin he wanted and pinned his line kneeling on the floor of the nurses station! The nurses really are amazing!

Then we were off to the playroom to play. We will not start anything today until we have blood results back to see what, if anything, yesterday's infusion did. Often times when he is dropping as quickly as he was yesterday, the first infusion will really do nothing except stop the fall, it won't increase us at all, but there is always that chance that it did enough and we don't need a second infusion.

So we got in lots of play time today. Here he is selling cookies.

Then he took his babies shopping.

Then we did some art work. Mainly cutting. He is working on this skill at school a lot, and he likes to be able to do it whenever he can.

Then he glued his cut art work to the paper on the easel, and made a giant green picture. He had fun gluing it and sticking it up there. And kept showing us his "master piece" and having us ooh and aah over it. It was adorable.

Then we took the body puzzle apart. Unlike normal, he never actually went back to put it together today, so I did it later, but he enjoyed puling it apart.

 Then Dr. C came in to tell us Levi's count.  It was 36! Not bad at all. That means yesterday's infusion stopped the fall, and even increased us a little, but we will most definitely be doing a full infusion today. Dr. C put the orders in and we had a few more minutes to play before things got going.

He even had time to access his baby!

Then Nurse K came into the playroom with Levi's Benadryl and Tylenol. He took the Tylenol like a champ as always, and then we did the Benadryl a little different since Levi is now 4. Instead of pushing the benadryl through his port slowly and then running a slow flush, we pushed it all in at once, and then just ran a 10 minute flush to force it into his blood stream and out of his tube. What this means is that instead of being hooked up for 20 minutes to get benadryl, it's only 10! Levi wanted to stay in the playroom since another little girl had come in and they were playing nicely with the food, so we told him that as long as he set and played that was ok, but that he couldn't get crazy and start running around because of his pole, or else we would have to go to the room.

After a few minutes of playing Levi asked if he could go and get his snack and go to the room. We said sure and he hopped on his pole for a ride. He got over to the snack cabinet and found popcorn! His all time favorite! And he asked if he could help pop it! So he opened it, put it in the microwave, and pushed the popcorn button.

While it was popping he went hunting for another snack. Once we get to the room and he is hooked up, all this kid does is sit and eat and drink! I know he is bored, but man can he put away a lot of food  in those few hours sometimes!

Then we headed into the room to get his plasma started. As is our normal routine we went potty between unhooking the benadryl prior to hooking up the plasma. Man was that a fight today. I carried a crying, screaming, kicking child to the bathroom. Once we got in there he seemed ok, but it was rough getting him there. Then we went back to the room to get things going.

Snack and plasma time!

After Levi was done with his popcorn he wanted another snack. Usually they have trail mix bags so we offered that to him as a choice. Man was that a BAD idea! Because there was no trail mix. So instead he made his own. We let him pick 4 or 5 different snacks, crackers, cookies, gummies, etc. He helped us open all the packages, and dump them into a cup, and then we shook the cup until it was all mixed up! Man was he proud of himself and his home made trail mix.

We started out the infusion watching movies, but nothing was really holding Levi's attention today. I kept offering him different choices and nothing was working. Finally I asked if he wanted lunch and he said yes, so I headed to the cafe to get him some fruit, while Jay heated up his spaghetti from last night.

While I was in the cafe Dr. C stopped by and checked out Levi. She didn't see any immediate reason for Levi's fast drop. No ear infection or fever, no cough or bad sounding lungs, no swollen glands or anything else abnormal. He did have a slight sniffle and she said it was probably related to that. Although I don't agree since he has had that slight sniffle for about 2 weeks now, I think it made her feel better to have a reason for this fast and unexpected drop.

Jay and Dr. C talked about next plans. She was leaning towards keeping us another night to run blood work again tomorrow and see what happens. Jay explained about Levi's birthday party and she asked where it was. He told her it was at Rumble Tumble and she was not overly impressed. She did, in the end, give us her blessing to go home after this infusion with the expectation that we would run blood work tomorrow morning at home before his party to make sure he was safe enough to play and "Rumble and Tumble". We said that was more then fair and understandable, and we would want to do that for our own piece of mind as well!

I came back from the cafe and Jay and I talked and then we settled in for some lunch. Levi ate a little, but was mostly just rolling around. The new way of doing benadryl was definitely effecting him more then the old way, if only he would close his eyes, I think he would have been asleep in minutes, but that little boy will NEVER give in to sleep. Sleep is like the worst thing in his little mind, he might miss something, so he will NEVER EVER EVER give in to sleep!

Eventually we gave up trying to have him watch a movie and eat and let him have his tablet. This made the last hour of the infusion go by much smoother. He was calm and less frustrated so that is always good.

Finally his infusion was over! It seemed to take forever today! Levi asked to go to the play room and of course we gave him his post infusion time in there. And he wanted to color! It is always the most frustrating thing as a parent when he has been itching to get u and do something for the past 3+ hours and then he finally can, and he picks a sitting activity! It always hurts my brain!

And then we were out of there. Levi was off like a rocket as soon as we told him that we were outta there, and he ran down the hallway!

And he is now tall enough to put away his key without the bench! It doesn't seem right that he can reach the box all by himself. I have been sliding that bench for years, but today he just went up and did it! It's crazy!

Then we were out of there! With the knowledge of the plan to do blood work tomorrow, but the hope that all would go well and the plan to go home and prep for his party!

As is our usual when he does two back to back infusions we stop at the little store just below the hospital and "surprise" Levi with a new TsumTsum. Today it was Meh from The Emoji movie. Levi was stoked.

The drive home was LONG! Levi generally needs one potty break in the middle of the drive on the way home from infusion. Today Levi needed 4! And all of them were told to us when there was no time left. The third stop actually resulted in an accident. I don't know if it was because it was the second infusion or if it was because he drank more, or what, but it was insane!! Our normal 2 hour drive home, was closer to 3! And by the time we got home, we were all exhausted and just ready to be done with the day.

I really hope that tomorrow's labs come back better, and I don't have to worry about Levi at his party. Fingers crossed everyone!!