August 10 - Infusion #44

August 10 - Infusion #44

We got over to the hospital at 7:45, plenty of time to drive all the way up to Purple and park. Levi is always excited when we do that. Levi and Bear found the elevator and we raced daddy who went down the stairs. He managed to beat us this time!!

We got checked in and went out back. Levi really wanted to make it to the BBQ at David's House so we had told him that he had to be super good and do everything right the first time to get things moving a little faster. So as soon as we were checked in he ran out back, said hi to Nurse A and then went right in the room to do his work before she could even get there. It was cute! He can be so good and motivated when he wants to.

They gave him choice of room and he picked Jungle (shocker!). He put his stuff down and then was off to the playroom to play.

Dr. K came in to the playroom to talk to us and discuss how things were going and to examine him. It always amazes me how truly accommodating they are, and how they want to make the kid as comfortable as possible and will do whatever they can to make the kid happy. Dr. Cl had ordered Levi's thyroid labs to be done and I hadn't had a chance to do them at WD, so Dr. K agreed to do it with his labs today. It's so nice that they will run whatever is in the system for us.

Then Levi was off to playing some more.

He is really into wanting to cut lately. It's cute and is working on his fine motor skills so I generally have no problem with it. He had a blast today cutting the red paper.

Then he found the etch a sketch. I am not sure he has ever played with a real one before. He was really good at it, and had a blast doing it! He spent a long time drawing with it.

Then Nurse S came in to access his port. The access went really well as usual. He has started telling the nurses "Don't hurt me!" but will mostly sit till and let the do things.

Then we got the benadryl and tylenol going. Levi didn't want to watch a movie, he wanted to go back to the playroom. We are fine with that, so off we went, with his trusty pole.

Levi was playing doctor. He's really adorable with what he does. He mimics what the doctors and nurses do. And if you pay close enough attention its a great way to learn where Levi is having anxiety issues with anything as he will act it out with the dolls, and tell the not to be worried and that it doesn't hurt.

Levi wanted to go on a wagon ride to the snack cupboard. He wanted bear to ride with him. So off we headed to the snacks.

We arrived at the snack cupboard and this is where things took a rough turn. The benadryl had been working for just enough time and Levi couldn't cope at all. He started screaming! Bloody murder screaming! Yelling at us with attitude, not being able to make up his mind, and just screaming. It was awful. The nurses even came to check on us.

After attempting to reason with him I gave up and just sent him into the room. If he was just going to scream at least we could be in the room with the door closed to muffle the noise a little. I got him the snack he usually chooses, the movie he generally wants, and a warm blanket, and he finally settled in Jay's lap. He zoned a little to the movie and relaxed some. Benadryl is a blessing and a curse. I love that it helps protect him from a dangerous allergic reaction, but I HATE what it does to him. It doesn't make him sleep anymore, it just makes him angry. I am sure it makes him feel strange and he doesn't know how to process that, so he gets mad. But man do I absolutely despise the 30 minutes or so of Benadryl screams and anger.

Eventually he came out of it a little bit and had a snack and a drink and settled in to watch his movie.

Eventually he was feeling even better and didn't want to cuddle with daddy anymore, so he moved to the wagon.

And then he kicked daddy out of his chair so that him and Bear could have it.

Levi's plasma was ready and they got it started. Due to his weight going up again we have gone up in bag size a little bit more. Levi watched his movie for a few minutes and than asked if we could pause his movie so that we could go to the playroom. Jay and I looked at each other and said sure, and headed down there. We love that he likes to play and not just sit like a potato during infusions, but it also is stressful in the playroom because he doesn't remember that he has a pole and a line. But the only way for him to get better at it is to do it, so off we went.

 We got to the playroom and Levi wanted to read the body book, so Jay and him set down to read some of it.

There was another little boy in the playroom and Levi and him hit it off and were playing together. Henry's mom got out the play dough and Levi settled in to play too. Nurse S came in to get some things started for Henry and to bring Levi's labs. His counts today were 101, so its very good that we are here. We are high enough that one infusion is plenty, but in need of an infusion. The perfect spot for an infusion.

After the play dough Levi played doctor some more.

And then pushed the baby in the wheel chair. It was an interesting parade. Levi pushing the baby in the wheel chair and Jay pushing Levi's pole.

After the dolls it was time for a wagon ride. The hospital had gotten this new panda wagon that allows you to clamp the pole on to the back of it, and both boys had to try it out. It was super cute, and so much easier to steer then the other wagons and since it holds the pole makes it even better. We rode around for awhile.

Then we headed back to the room for a movie and some relaxing time. Eventually it turned in to tablet time as the end of the infusion got closer. Levi did really well with everything.

Close to the end of Levi's infusion Dr. K brought in one of the new doctors. Dr. V retired and Dr. C is retiring at the end of August so they are bringing two new doctors on staff. It will be interesting to get to know them. and for them to get to know Levi and his unusual case. Hopefully they will be as great as Dr. V, Dr. C, and Dr. K.

Once Levi was finally done we went to the playroom for a few minutes as just as they were finishing up with Levi the hospital went into lock down. It ended up being a drill, but they still follow all procedures, so I felt it made the most sense for us to just stay in clinic and wait it out.

Once the drill was done, we packed up our stuff and we were outta there.

Levi and bear led the way!

Thanks guys for everything. Maybe we can make it 2 months again! Summer is always our best time for good counts. The fall and winter are the worst with all the germs in school that go around. In the summer his counts stay up which is so nice. Hopefully since we are in the beginning of August and still have over a month of summer we will be able to make it longer again, as its so nice to have the break and give Levi's body a break from the constant plasma.