April 18 - Infusion #40
We got over to the hospital and as always Levi requested that we park on Purple. I said sure and we headed to the top of the parking garage. Our spot was open by the sign and Levi was excited. Then we headed in to ride the elevator down. It really is a nice view from that high up and Levi enjoys watching it. He was holding on tight to Strawberry though as he didn't want to drop her down that far.
Once inside we headed to registration. All of the ladies at registration now Levi by now and are generally pretty excited to see him. They also all know that he likes to get a "key" at this point and automatically give him one! Which makes him happy. He was being good waiting today and just sitting on the bench. Somedays he is running around like a crazy man at registration. I think that some days his anxiety of going to the hospital is higher then other days, which always kinda shocks me since we do pretty much the same thing every time, I don't quite understand why some visits would be harder on him then others, but I guess thats the negative of anxiety, it rears it's ugly head at the worst times with no warning or reasoning.
Once we got registered we headed inside. Levi was lallygagging behind so I told him that I was gonna beat him to see Nurse A and get to pick the room. That got him moving and he ran down the hallway, almost running into one of the adults sitting and waiting in the adult waiting area. Nurse A gave him the pick of any room he wanted and he picked Jungle (shocker?!? haha). Then he was off to do his work. He climbed right up on the scale with no concerns and stood super still. I think it was the fastest weight we have ever gotten on him.
Then he set in the chair with strawberry and did all of the things he needed too. We didn't even have to get a sticky oxygen sensor he kept the clip on one on! I was really proud of how fast he got all his things done and how much he didn't move!
Nurse A gave Levi a new bracelet as well. A bright red Allergy bracelet. Levi has reactions to tagaderm, we have never entered it into the computer as an allergy before, just always advised any new nurses not to use it and moved on. Apparently when we were inpatient in February they listed it in his chart as an allergy, so now he gets a red bracelet when we go as well to make sure that no one uses it. It's nice that I don't have to worry about it or pay as much attention to their job and can concentrate on Levi more, but it is weird to have another bracelet on. Levi didn't seem to mind too much, but did ask me several times what the words said (he is all into wanting to know what everything says. The kid is dying to be able to read on his own, but isn't quite there yet)
After that Nurse M (a new nurse who was covering for Nurse K who was on vacation!) was ready to access Levi's port. He was very unhappy about this today. He cried and cried almost screaming at one point. Not something he usually does. He kept looking at Nurse M and telling her not to hurt him. I think she was a little taken back by that and didn't quite now how to respond. The access went pretty well all in all. Once the needle was in and Levi realized that it didn't hurt because the cream had done it's job, he seemed to settle down. After all the tape and such was on, and the blood was drawn, Levi was off to the playroom to play.
The first thing he always does is play doctor. He likes to make sure the babies are well taken care of.
In the middle of Levi playing doctor, Dr. C came in to talk to us and to check him out. We talked for a few minutes about how over tired he had been in the last 4 days or so (except for this morning of course!) and how he has some bruises that are dark and in odd places. Then Dr. C asked Levi if she could look at him and he said "of course!" and came and climbed up on the bench. I love that all the doctors and nurses are so accommodating, they want the kid to feel so comfortable that they have no problem doing meds or a quick exam in the playroom so that the kid doesn't have to stop what they are doing for long. It just goes to show how much they are all about the kids. About half way thru her exam Levi looks at her and says "are you done yet?" I half giggled and was about to correct him for being a little rude and her just doing her job, when she kinda gives me a look and says "thats a very important question Levi! I have a couple more things to do, let's do them!" After she had checked him over she said that with what we had said and what she was seeing we were more then likely headed for an infusion but since we came in with our last counts higher then 100, she wanted to get blood work back prior to ordering the plasma.
I knew that we were in for a bit of a wait, and we settled in to the playroom to play. Levi wanted to do a parade, and since the playroom was empty we said sure. So around and around and around the table we went playing our instruments. Levi had the drums! He had a blast and was so excited that both Jay and I got so involved in his play.
After the parade we moved on to lots of other toys and books. Jay and I let him explore and pretty much do what he wants in the playroom and just go behind him on clean up duty.
Eventually he got bored of the playroom and decided to go for a drive. I can't believe how big he is in the cozy coupes now. It's crazy! He had a blast driving around!
He made it around to the snack area and decided that he needed to stop and fill his car up with snacks and drinks. It was really cute to watch him park, get out, close his door, pick out snacks and drinks, load up his trunk, and then get back in and drive off.
After a few minutes of driving we needed a snack break. Not really a huge surprise. Generally once he is accessed his anxiety goes way down and he gets hungry if he didn't eat much breakfast that morning. His first snack of the day was Orange bubbly soda and M&M mix (aka trail mix).
Him and strawberry enjoyed the snack. Also if you look closely you will see that Strawberry is wearing Levi's medical bracelet as a belt. He doesn't have to wear it at the hospital since he has on his hospital bracelet. Strawberry had been upset that she didn't have a bracelet and that Levi had 3 (his medical bracelet, his green hospital bracelet, and his red allergy bracelet) so Levi had asked if he could take it off and let her wear it. It was the sweetest thing, so of course we said sure!
After a little snack break Levi asked if he could watch a movie or play on his tablet. I said no, since you aren't hooked to anything yet you should be running around and playing, so somehow that turned into him conning me into a wagon ride. He is lucky he is so cute!
Making a three point turn with a wagon is hard man! Those things don't turn easily! But we made it!
We were talking to the nurses and both Jay and I realized that we had forgotten to give Levi his ranitidine that morning, so Jay hustled out to the car to get it. If we don't give it to him prior to an infusion they will give him another brand of it, and it doesn't seem to work as well, so we just figured we would give ours since we should have that morning prior to coming to the hospital anyways. Oops on our part, but our schedule was all out of whack and therefore our routine wasn't on.
Levi and I played puzzles in the playroom while Jay was gone. Levi did the body puzzle twice all on his own! He as really proud of himself.
Then he got excited because his favorite truck, the airgas truck, was making its delivery. I think he likes it because of the bright picture on the side and the fact that it delivers almost every time we are there. But he watched it for several minutes very excited that it had come.
A little while later Nurse M told us that she had his bennadryl and tylenol ready to go. We were a little shocked as no one had told us counts yet, but figured if they were moving on with that then Dr. C had given the orders because blood work had come back. Usually at David's House in the morning Jay and I will each guess what we think his counts will be (Levi guesses too, but his number ranges anywhere from 4 to 4689 or higher, so not a real guess at this point). I guessed 79 and Jay guessed 50 and said he was hoping to be pleasantly surprised. Well his count came back at 81! It's not a first time that I have been almost dead on with the counts.
Since Nurse M had told us that she had his bennadryl and such ready we headed back to the room. Levi asked if he could paint and so we asked Nurse A for some paints and she said of course she would bring stuff into the room. We picked out a few movies and headed into his room expecting him to get hooked up soon. Nurse A came in a few minutes later with paint, paint brushes, and water for Levi and he set in to paint his caterpillar and dinosaurs. He had a blast.
Thirty minutes later Nurse M finally came in with his bennadryl and tylenol. I was quite annoyed at this point. We had just used 30 minutes of sitting activity when it wasn't necessary and instead he could have been in the playroom. Oh this is going to be a long day. Nurse M is very nice and we like her, but she doesn't seem to understand the needs of quickness for kids. She gave him his tylenol in a cup to drink instead of a syringe, boy did he love that. He loves purple tylenol and probably spent 5 minutes licking the cup after he drank it to make sure he got it all before I finally took it away.
After she got his bennadryl started we settled in with a movie. Today we watched Fly Me To The Moon, a movie none of us had ever seen. It was cute but odd. Levi seemed to really like it and it held his attention.
After the bennadryl and flush were done we got him unhooked for a quick potty break before hooking up his plasma. Nurse M seemed a little confused about that too, but once I explained a little she seemed better. Again I really don't think she is used to young kids. Once his plasma was hooked up Levi was acting a little tired, so he had some quiet cuddles with strawberry and watched his movie.
Daddy headed to the cafe for lunch. It's a Wednesday instead of our normal Tuesday so the specials were a little different so that was nice. Levi had a meatball sub and fruit. He was pretty happy about that. He ate while he watched his movie.
After he was done eating and his movie was over he asked for tablet time instead of another movie. I said sure, both are staring at screens, and at least some of the time on his tablet he is playing educational games, so have at it kid. Within the past few weeks he has started telling me when he is watching shows on his tablet versus playing games. I think it's because a few times we have said he can have tablet time but he has to play not watch TV. So now he looks at me with this little look and says "I'm watching shows Mommy!" Every time he did that today I said "ok buddy, cool! Whatcha watching?" and he looked a little confused. I think a few times he thought I was going to tell him that he had to play games. But there are no rules at infusions. If he wants to watch TV all day, go for it.
Finally the infusion was done! It seemed like it took forever today. I think it was mostly based on lots of waiting. But finally we were done. Deaccess went about as well as possible. Levi let her take it off and even took a lot of the sticker off himself, which he always likes to do. She also let him help push the saline and heparin into his port which he always likes to do. Then Levi went off to have his 5ish minutes of free play time. He told me he was taking his car to the beach. Not sure he found it in the hallway, but he sure had fun looking for it.
Then it was time to head out. Levi put his key in the box and we were free.
At this point Levi flipped a switch and suddenly realized he was tired, but in no way was he going to close his eyes and give in to being tired, so instead just became a ball of cranky goo. It was a LONG ride home! One we got home it was close to 5pm, so way to late to put him down for nap, but we did send him to 60 minutes of rest time which seemed to calm him at least. Bed was at 8pm and by then we all needed it!!!
We will do blood work tomorrow since it's Thursday. Hopefully this infusion will have brought him up some. We aren't looking for a huge turn around since it will only be about 18 hours post infusion, but as long as we see some increase and a number over 100 then we will be happy and can resume normal activities.
