January 3 - Infusion #21

January 3 - Infusion #21

Today's infusion started out much like any other. But oh was the day to take a turn we weren't expecting!

As soon as we got over to the hospital Levi headed right into the jungle room to put down his stuff and take off his sneakers.

 He went in to do vitals and was being a very good boy. We had our normal not wanting to keep the oxygen sensor on his finger, but overall not bad. Everything was ready for us so he got accessed right away and hooked right up. Dr. V was also ready to see us so he came right in to take a look at Levi. This is when things started going down hill. Since it has been a year the research study that Levi is a part of wanted additional labs done so we had to do those as well as get Levi to pee in a cup, (no problem there I think we would be 100% potty trained if I told him he could pee in a cup every time he went pee, he thinks its hilarious). While I was talking to Dr. V and Levi was still on my lap he got a hold of his line and yanked on it, not a huge deal, just told him not to do that. Then he got a hold of the tube of bennadryl that was going in to him and decided that grabbing that out of the machine was a great idea. This caused all of the bennadryl to go in quicly versus over 10 minutes. Ok, still not a huge deal, a bit of an inconvenience but hopefully it will just make him sleep. That was not to be our luck though!! We switched over to Saline and Levi headed to the playroom to play!

Then it was time to get his plasma started and he was becoming a bit of a crazy hyper out of control guy in the playroom. We were hoping it was the bennadryl reacting and that if we brought him back to the jungle, a warm blanket, a snack, and some planes he would be asleep soon. He really did seem like he was going to sleep for a little while.

But, no sir! Sleep was NOT in our plan. As soon as we even possibly were headed that way we started thrashing around.

We played with our socks! Look at this new way to wear them!

We insisted on peeing about 100 times, just to get our of our chair.

We threw the blanket on the floor, threw Cranberry (the chameleon) on the floor, put our socks on the floor, tried to eat our tubie, tried to eat our line, tried to shut it off, tried to play with the buttons, dumped our snack on the floor, yelled, screamed, kicked, you name it that was our day.

As the infusion was finally nearing completion we ate lunch. But even that wasn't much of a distraction. A bite here and there and a lot of yelling, thrashing, and spinning.

Finally the infusion was done! Nurse K came in to deaccess his port and his port was swollen! At some point he had pulled the needle out of the port and the saline was going into his skin instead of into his port and therefore blood stream! He wasn't complaining at all so it had to only be saline, as when that happens with plasma he screams in pain. After she was able to get his needle back in so that we could put the meds in we spent 10 minutes or so squishing all of the saline out of this skin. It was the weirdest thing ever, but it was definitely all coming out as it was getting smaller and smaller. We then put gauze over it instead of a tiny circle band-aid because we expected it to continue to ooze on the way home.

Levi's counts had come in at 194 for the day. Not a bad number, but the first time we had seen under 200 since before Thanksgiving. Levi headed to the playroom to get out a little energy before the car ride home, and to give Mommy a little breather as I was at my absolute limit.

We got in the car to head home assuming that crazy man would fall asleep right away. But no sir! We have a 96 mile drive home. Levi fell asleep with 14 miles to go! That's right. He stayed awake, kicking, singing, thrashing, and making mischief for 82 miles!!

When we got home I was able to transition him to his bed where he slept for about 45 minutes. He woke up from his nap as crazy as he had gone to bed. He was throwing tantrums all evening, yelling, screaming, throwing himself on the floor, throwing toys, kicking, refusing to eat dinner, it was awful. By 7:20 I had had it. I needed him to calm down somehow, so I decided to put him in the bath tub. Usually that will calm him down and I figured he could play in there for 45 minutes. As soon as he got in he started scratching his legs and arms. He has eczema in the winter but the bath has never affected that before. I let him play for 20 ish minutes and during that time he was asking to get out of the bath every 5 minutes or so. Levi never asks to get out of the bath. In fact usually he throws a fit when it's time to wash. I gave in and pulled him out of the bath and as I was drying him off I looked at his back and arms and they were covered in a rash. Not an eczema rash, but a hive like rash! UGH!! Levi has got to be having an allergic reaction to his plasma. There is nothing else that could be causing this. We called the on-call doctor. It was Dr. C. I definitely feel like we woke her up! Sorry! She recommend that we give him a double dose of bennadryl and monitor him, and call if there were any changes.

After a full search of the house for the bennadryl we gave him a double dose. Then we went downstairs for cuddles and milk until the Bennadryl made him sleepy!

It wasn't long before we were putting him to bed. I checked on him frequently throughout the night. It was a fitful sleep at the beginning but by around 2am he was sleeping quite peacefully. By morning the hives were gone and he was cranky and crazy, but more normal.

I gave him lots and lots of hugs after the hives. I felt so bad as a mom. I had not been the nicest to him all day because he wasn't behaving the way I know he can be and he was driving me crazy. I now know that he probably wasn't feeling right all day at the infusion, but because he is pre-medicated with Bennadryl it was enough to not make the hives come, but not enough to not make him feel right, and since he is only 2 he couldn't explain to us how he was feeling, he just was acting up. I felt so bad! Mommy guilt to the worst at this one!