July 21 - Blood Work

July 21 - Blood Work

Today's blood work went quite well. Levi did great as always!

He picked out a princess band-aiid and ended up getting Ariel an picked a pencil and paper for his prize. I think we have about 14 of those pads of paper now. Anyone in need of them?! We don't let him have pencils in the car so he quickly forgets about them, but then picks them out again at the next blood work. Cracks me up.

He checked out his fountain and didn't throw a fit when I said no to a donut, so I will take that as a win. We got to the car and he put his sunglasses on in the parking garage and told me he was a cool dude!

He also insisted that I take a picture of his nosey!! So here it is for all to see!!

Counts came in around 11:30 in the morning! WOW!! We haven't seen counts that early in a LONG time. Counts however were very low. ;( 182. Only a slight increase in his number since infusion on Tuesday and if you take into account the 40 point approximate difference between the two labs it was actually a drop since Tuesday. Not what we like to see. Jay and I discussed what we wanted to do and decided that we would do lab work again tomorrow to see if it was increasing. Since Dr. V is on vacation we made the call on our own (knowing that he would probably agree with us), depending on what counts come back as tomorrow we will then decide if we need to call Dr. V's staff or not.

July 19 - Infusion #12

July 19 - Infusion #12

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!

He is doing so well with his infusions (medically) and he has gotten bigger so we are able to up the speed of them, of course we are also upping the quantity slightly as he gets bigger, but they are still faster. Now we do 75mL/hr for the first 15 minutes, 100mL/hr for an hour, and then 125mL/hr to finish. That definitely helps our cause.

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.

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!

David's House - July 18-19

David's House - July 18-19

As we are driving to David's house our vacation is officially over and we are headed back to the "real world". We went to the Maritime Aquarium today and had a blast! We left in the afternoon to start the 4 hour drive from Connecticut to David's House. We quickly hit traffic and weather making the drive even longer. Mr. Levi fell asleep during the imax movie and a few minutes in his stroller so wasn't having anything to do with a nap. He watched a movie, played with stickers, and colored in the car. It was a long drive!

We got to David's House around 8pm and got checked into the Dino room! :) Our most common room. This would be the first time that Levi was sleeping in a cot and not a pack and play. The plan was to pull the mattress off of the cot and put it on the floor for Levi to sleep on, but that plan was not to be, Levi did not want his bed moved. As soon as he saw his bed all set up he was jumping up and down. They had put Elmo sheets on the bed and a star comforter and he was ecstatic! He came running down the hall to tell me all about his "twinkle twinkle little star bed" and how it was all his!

I think they like him at David's House :) 

Levi wanted to go out and play and so Jay and Levi headed to the playground. I stayed in the room to answer a few important e-mails and take a few minute breather after driving over 5 hours. It wasn't long before I headed out to play too! There was another little boy on the playground that Levi played with some. :)

Before we knew it it was time for bed. We headed up the stairs for PJ's, brushing teeth, and climbing into bed. Levi wanted a drink so I headed downstairs to rinse his cup and get him some water (the only drink allowed in the bedrooms). Levi took a few minutes to go down, but not bad. He did ask daddy to "soft him" and then me to get daddy "Daddy needs to soft me!" which means he wants someone to sit beside him and rub his belly. It was very cute!! He fell asleep clutching his cup! With ALL his fella's looking on!

Jay and I did our normal sit in the hallway until he fell asleep. It didn't take too long, so that was nice. If you have ever wondered how incredibly exciting it is to sit in the hallway, here is what our view looks like:

Then we headed downstairs to relax for a few. I went up to bed around 10 and Jay came up around 11 or so.

Levi slept fairly well, but did fall out of bed once in the middle of the night. He cried a little, but I think it startled him more then hurt. He was back asleep in just a minute!

The next morning Levi was up bright and early! Our appointment was technically not until 9:30 (although they have no problem if we come over early). So I gave Levi paw patrol and laid back down for a few.

Watching Paw Patrol in bed.

Before long it was time for breakfast! I got dressed and Levi and I headed downstairs. It was quiet! Levi had some cereal and some fruit, but didn't eat great. I believe he is starting to put it together, that after we eat breakfast we go to the hospital. I don't like that, but I don't know what to say to him, it's the truth. He doesn't usually see it as a bad thing, just an unknown thing. He gets overly hyper and not listening. Pretty much just a cranky crazy little boy. I try to keep our routines all the same and keep things light and fun, but it gets stressful with him not listening and the fact that David's House doors don't lock from the inside so he can easily get out of the room while we are packing up.

We finally got all packed and headed for the car. We made the short drive to the hospital and got parked in the garage. We were getting out of the car when I realized that we didn't have Crayon. Levi had been lugging him as he wanted to bring him into the hospital. Crum! We must have left him at David's house. We decided not to mention it to Levi, but to get inside and checked in and then Jay would head right back over to get him.

Another successful David's House trip. We will be back in three weeks!

July 14 - Blood Work

July 14 - Blood Work

Today is a little different. We are on our way to VACATION!!!! :) Thomas Land, Sesame Place, Crayola Factory, and Maritime Aquarium here we come. But first we have to get the blood work out of the way. The plan is to leave the house at 7:00am and we pulled out of the drive way at 6:58!! Me, Levi, Jay, and Grampa were all on our way. The morning went well. A little hectic, but well. Levi woke up early which added to the hecticness, but all in all it went great. Since we were starting a Long drive Levi got to watch a movie and *shocker* he picked Sheriff Callie (our favorite car movie!) So it was a quiet drive to the lab.

We got to the lab and Levi showed Grampa and Daddy the fountain. Then we were off to see P. There was no line ahead of us, but she wasn't ready either, so we set down to wait for a few moments.

It wasn't long before it was time to head in. Levi picked out his band-aid and climbed up in the chair. The stick went well as always! Grampa and Daddy were there to watch and see that everything went well. He was off to the treasure box before you could blink an eye. He picked a pad of paper and a pencil! Then we were off to the fountain and out to the car. Levi knew that he got to go to Dunkin Donuts today so he was very excited. He played with the echo the whole way to the car and continued in the car, but all in all the morning went well.

It's nice to have other people along for the ride to blood work, but it adds some stress too as Levi and I have some routines that we do that no one else really knows. In the end things went well, but there were several moments of "Don't mess with the routine" and "He's good!"

We headed to Thomas Land! (Hence the Thomas outfit). When we stopped for lunch in the park I called for numbers but they weren't in yet. As we were leaving the park in the afternoon I called again and the numbers had come in. His count was down to 225. Not a bad number with an infusion coming up. But a definite drop from Monday (as expected).

Plan: VACATION!!! :) Ending with David's House and an Infusion  on 7/19.

July 11 - Blood Work

July 11 - Blood Work

This morning's blood work went off without a hitch. The morning went well at the house, no breakfast spilled on the floor, so that's a plus :) Levi was great in the car and all ran smoothly.

We got to the lab and there was a line ahead of us. We settled in for some waiting with a magazine.

But that quickly became boring so we moved on to selfies. He was being a little ham this morning for the camera.

Finally it was Levi's turn. We headed into the lab and picked out our band-aid. He picked out a dog from "Secret Life of pets". He thought the dog looked funny. The draw went super quick and easy as always. Levi was off and running to the treasure box while I was talking to P. He has been making great choices from the treasure box lately and I haven't had to steer him  in a different direction so I wasn't watching super close. I turned around and he had picked out a green whistle. Not a fake little kids music instrument whistle, a REAL whistle! Apparently the treasure box has new things in it. Who in their right mind thought giving kids Whistles was a good idea.

The treasure box HATES me!!

Levi was so excited and he had already put it in his mouth so it's not like I could get him to change his mind. At first he didn't know how to make it blow so I was thinking I was safe. We headed out to the fountain after high fives and hugs.

Off and running with his whistle! 

He asked for a donut but I said no and he was ok with that. We headed to the car. Everything was going well until about half way to the car when he accidentally made the whistle whistle. He was shocked and then excited! So for the next 28 minute drive to daycare all I heard was *WHISTLE* and then "Mommy, Mommy I did it!!" *WHISTLE* "YAY!! that's funny!" *WHISTLE* "I did it!" About half way through the drive I was seriously wishing I had gotten him the donut!!!! Drop off at daycare went well and the ride to work was WAY quieter!

I started calling the house around noon for numbers. By 4:00 there was still no message. Jay called again and there was a different receptionist covering. She was SUPER nice! She said that she would have K call us asap. K's form of ASAP is 5:15, but at least we got the count. His count today is 254.

Plan: Blood work again on Thursday 7/14.