We got checked in and headed out back. Levi was walking all by himself. We went over to the desk and saw that Nurse K wasn't there and instead a different nurse, Nurse S was there. This could be an interesting day!
Nurse A was all ready for us to do vitals. Levi did a pretty good job. He gets bored standing on the scale for so long. I really don't understand why they don't have a digital one yet. The slide and wait for it to balance one can take FOREVER!! Height, oxygen, and blood pressure went great! But then it was time to do temperature and well that was going to be our nightmare for the day. Levi wanted nothing to do with that thing in his arm pit!
We got settled into the jungle room and Jay headed back to David's house to fetch Crayon. Levi and I headed to the play room to play. There was another family in the play room with several people talking to the mom about feeding and home life. It's always a little uncomfortable to walk into that. I know its a public place, but I also know some of those conversations aren't easy to have with anyone around. Levi played for a few minutes and then it was time to head back to his room for access and Benadryl. I made the mistake of not grabbing planes before we got into his room and Jay wasn't back yet. Hopefully he will be back quick!
Nurse S was our assigned nurse for the day. I was able to talk to her some about things and it seems like she was a pediatric nurse for 15 years but moved to adults about 8 years ago. She comes over and covers shifts when people are out on vacation. She seemed nice, though maybe a little out of practice with kids. Levi is aware that being accessed isn't going to hurt but at the same time he gets angry/nervous. He sometimes kicks/pushes his legs out straight, and she was not happy about that. Nurse K and Nurse T just kinda blow it off but Nurse S definitely looked at Levi rather sternly and said "Don't kick me!" I think this scared him because he was pretty unhappy after that. She continued to seem nervous/frazzled, breaking a glove, dropping a tube, just all around a little out of it. The access was finally complete, the blood work was off to the lab, and the Benadryl was started.
Levi was screaming for planes. Oh goodness why didn't I grab planes before being stuck underneath him. Jay came back several minutes later thank god! I jetted off to the teen room to grab the movie and we had planes on the screen before a total melt down could happen!
Dr. V is on vacation this week! So Dr. K came to check on us. She looked at Levi, checked him out a little, and asked us a few questions. For the first time in Levi's life he said "ahh" and opened his mouth up wide for a doctor. Normally he clenches his jaw down tight. We mentioned this to her in a joking way but it actually started a pretty serious discussion. Apparently Levi needs to be pre-medicated with antibiotics in order to go to the dentist. The scraping of his teeth can cause him to swallow bacteria which can then stick to his port causing it to fail! Wow!! Good to know!! His next appointment is in a few months so we will call them and ask for a prescription then as they will give him liquid which is only good for 14 days (so not something we can hold on to for long).
The Benadryl was kicking in and Levi was getting very lethargic, though was watching planes. They came in with his plasma and got it started. Awesome! Levi's counts came back today at 159. Thats a 66 point drop since Thursday, not great, but not awful, especially taking into account the 30-40 point swing between the two labs. Today is flying by. The next thing I knew, Levi was sound asleep!
Wow! Today is going to go even better then expected. Jay and I had a few minutes to talk to Nurse T after the infusion started. We discussed the lab results with her yet again and the fact that we can't get information out of K to save our lives! Should looked in the file in the computer and it turns out that not only is K slow at getting us information she isn't even entering it into the computer in a timely manner. The last lab results in the computer were over a week old!! And she is entering them under the date that she enters them not the date that the lab was taken, making it look to the doctor like his numbers are very different then they are! This is totally not acceptable!! Nurse T was completely on the same page as us and said that she would send an e-mail to Dr. V and that we would discuss it again in three weeks.
Levi's 15 minute alarm went off and he slept right through it. Awesome. He didn't move when Nurse A came in to do his blood pressure, awesome! But then she needed a temp, and that gosh darn temp was going to be the death of us. He woke up! And that was the end of his nap! Oh NO!! This day that should have been easy is going to be VERY long. Because now he is awake at the very beginning of his infusion, but he is angry because he is still tired but refusing to go back to sleep. A 15 minutes nap is not long enough!!
We watched planes, ate lunch, had a snack, talked, watched cars, and attempted to keep Levi occupied. At one point Levi said he had to go pee and we took him to the bathroom. He was doing really well attempting to hold on to his pole. But he was just so tired that he was stumbling on everything. Jay had the brilliant idea to let him ride on it. Duh, why haven't we done this before. Levi had a blast!
The infusion was finally done!! Nurse S came in to deaccess his port. She brought some spray that was supposed to help take the sticky off of the stickers that hold the needle in. I think it made more of a mess then anything, but she thought it helped, and Levi didn't seem to complain as much, though he was giggling and squirming from the spray being cold. After the needle was out Levi was off and running to the play room. We told him he could play for a few minutes before we left.
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| He thought the spray was hilarious!! |
Then it was time to leave. Another infusion behind us, the next one will be in three weeks!!
We were headed out and Levi stopped at the welcome desk on the floor that you come in on. We were a little confused why. The guy behind the desk was very nice and talking to him. Then Levi looked at him and said "Check in Please"! We all got a good chuckle out of that! We headed to the parking garage. Jay said "take my hand we are going in a parking lot" and Levi did and then said "Take my hand crayon we are going in a parking lot" and held on to crayons hand and we headed to the car!
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