March 29 - Blood Work

March 29 - Blood Work

Happy Thursday everyone!! Our's didn't start out on the greatest note with someone who really didn't want to get moving this morning! Barely got his astronaut to his space ship, and only did get it there because Mommy told him she was Angry and that gets him moving, and then Daddy basically put his shoes on for him!

But once we got to the hospital things turned around. I had to stop him from trying to climb into the fountain! He saw the money (which we have been working on what money is and what it means) and thought he could take some! We then had a talk about that wasn't ok.

 We got over to the lab and the Child Life Specialist was just coming out. She saw Levi's jacket (which has his name on it) and she said "Are you THE Levi?!?! The famous Levi?? P talks about you ALL the time!! I really have to come watch how this actually goes" and turned around to come and watch Levi's blood work.

He picked out his band-aid and started playing a game on the tablet. (We have now learned that P requested the tablet from CLS because of Levi and the other kids she has! So we are appreciative to them!) He was playing a Wild Kratts game and was having a blast. The draw went as smooth as ever! P really is so good to him. He wanted to keep playing after the draw was done, and I allowed it for a few minutes and then said it was time to go to the treasure box. Apparently I need to put the PBS Kids app on his tablet, as its loaded with great games!

He got over to the treasure box which was full of brand new things!! Sitting right on the top was a very cool Paw Patrol toy! One I am sure was placed strategically there for Levi (and didn't come from the dollar store) but Levi didn't want it. I think P was a little upset, but she got down on the floor with him to dig around. He ended up picking a green Sticky hand. Oh Joy! My favorite!! NOT! :) haha!!

 Then because it was Thursday and until this morning the week had gone very well, he was allowed to get his donut. Here he is showing off the donut case!

 He was very happy when it was his turn! He ordered his donut with proper manners and paid for it with both of his moneys! The Donut Lady couldn't give him a hug today as she wasn't feeling the greatest, but Levi was ok with that, and gave her a big wave! Then we were off to school!

 In the past few months Levi has gotten much neater at eating. But today was not a neat day!! We got to school and I just had to take this picture of his face!

 Then he was so proud to show me his hands too! When I was cleaning him up I asked if he had eaten any chocolate or just warn it all, and he said "I ate some!! By licking it!! HAHA!" and was laughing a ton. I love his little toddler laugh.

I got him cleaned up and he was in to school soon after.

Counts came in very early today! It was nice! His counts are 234! So another increase and a great number!!

Next Plan: Labs again on Monday!

March 26 - Blood Work

March 26 - Blood Work

We got to the lab this morning bright and early as it's the every other week where I have a 9am meeting that I have to be at and from the time I leave home, drive to blood work, do blood work, drive to preschool, drop off Levi, and then drive to work it's about 90 minutes. Levi was not impressed to be up early! He was doubly unimpressed when we got to the lab and P wasn't there!

He picked out his band-aid and got up in the chair, but was very very unhappy about it. Especially when there was no tablet only my phone to play on. This is the face of a very sad and tired little boy!

The draw went ok though definitely a little slower then P does it which threw Levi off a little. She cleaned his arm several times as she couldn't pick which vein she wanted to use, and he was unimpressed by that. Once she actually poked him she got the vein on the first try and got the blood right away, it was just the lead up process to the actual poke that took longer.

Finally we were off to the treasure box. Levi was unimpressed that the nurse pulled it out and opened it for him as that is part of what he likes to do. Then he couldn't make up his mind. He just kept going back and forth on different things. I finally had to tell him that he had to pick because we were headed to school.

He had his hand on a matchbox bus (which is the coolest thing ever and I so want him to pick it one day) and I thought he had decided, but at the last minute he put that back and picked the duck. In the end it was a good choice for him (not that he needs more stuffed animals) but because he has played with it and slept with it for days now!! (yes I am writing this blog post several days after Monday!haha... Life happens, I am not always on the ball!)

The duck has been named Quacky and watch out if you come to our house because he likes to tickle people!

We got to the car and Levi and Quacky finished Levi's TMNT cookie that had been a surprise in his breakfast cup! It was super cute and sweet!

Tonight Levi has gymnastics and Jay is picking him up, so when we got to school while Levi was getting out of his car seat I secretly stashed Quacky in the very bottom of his back pack. I told Jay later that he was there for Levi! And boy was Levi excited when Daddy picked him up and had Quacky!!

Counts took a little while to come in today, and I was just starting to get concerned that the different nurse hadn't done the paperwork right (yes in this day of computers they have to complete the paperwork every time we go, its not just saved in the computer. In fact his standing lab order just means that the lab paperwork is in a file cabinet drawer at the hospital!! Seems crazy) but then it came in. His counts are 228! Wow! A 27 point increase since Thursday! A great number!!! :)

March 22 - Blood Work

March 22 - Blood Work

Good Morning!!! We got to the lab this morning and there was one person already in the lab so we had to wait for a minute or so. Levi was being a little crazy man! But it made for some cute pictures.

We got inside and Levi got his band-aid and opened it up. P was all ready for him and had the tablet all ready to go for him.

Then Levi started playing games. He was super excited that PBS Kids had been updated and instead of having just 3 shows/characters worth of content it now had more then 20, one of which was Ready Jett Go! One of Levi's new favorite shows. P was shocked that there was more content and had no idea how it had gotten updated. So we all had a good giggle about that, and Levi was happy!

The draw itself went great as usual! Levi was so engrossed in his new games that he didn't even wiggle or move at all. I didn't even need to be holding his arm. It was over before he knew it, which he was sad about. I think he would have kept sitting there for 30 minutes letting her pump out his blood if he could keep playing his game!

Then we headed over to the treasure box. Him and P started digging around in it. He asked if she had anything that transformed. He is so into transforming right now!

He was having such a tough time deciding on what he wanted that P and him ended up dumping out the whole treasure box and going through everything!

Finally he settled on some bubbles (really bubbles?!?! of all the things in the box, he picked a purple bottle of bubbles! the kid is crazy!)

Then because it's Thursday and there have been no major issues this week he was able to get his donut. So we headed over to the donuts. He was excited to see the donut lady and went right to the door to give her a hug. Then he ordered his donut and paid for it. We are working on the fact that a donut costs $1.25 and that requires one dollar (or paper money) and one quarter (or coin or metal money). It is definitely sinking in as Thursday morning in the car he asks me if I have Paper and Metal money now instead of just asking if I have donut money.

Then we were off in the car and on our way to school. He ate his whole donut in the car which is a good sign that he was hungry! Some days he just licks the chocolate off!

Results came in crazy early (for them) this morning by 9:15!! Thats a great day for the lab. His counts are 201. So another drop, but still a great number. Sometimes it's hard to step back and realize that although he has dropped a ton of points in the last few weeks he is still great count wise. Anything in the 200's is amazing for him and not anything to worry about!

Next steps: blood work again on Monday. Have a great weekend everyone.

March 19 - Blood Work

March 19 - Blood Work

Levi was wide awake at 6am this morning!!! He's never been a good sleeper, but the last few nights have been even more rough then usual. We got to the lab very early this morning since we were all awake so early! There was one gentleman in with P when we got there so I told Levi to take a seat. He jumped around from seat to seat and then ended up on the seat way over there. I asked him why he was sitting all the way over there and his answer was "cause it's a big seat, see it's 2! we can both sit together!!! Mommy do you want to come sit with me?" Just about melted my heart! I definitely would have gone and set with him, but right after he said that P called him in.

 He picked out his band-aid right away, of course picking PJ Masks again! And then he climbed up into the chair to wait for P. Yes those are tattoos on his cheeks, Abby Cadabby on the left side and Ernie on the right side. We put them on yesterday morning for yesterday's Sesame Street Live and even after all day yesterday, multiple face washings, a bath last night, and sleeping all night (well some of it) they haven't even started to fade. You would think they were real, it's crazy!! But he was excited to show them off to his friends at school this morning.

 The blood draw went ok today. P did the normal routine and the second she even got the needle close to him he kinda freaked out, twisting his arm and grabbing it. Not sure what that was about! But after we got it rewashed and got him settled again the draw went great. Sometimes I think he psyches himself up.

Once the draw was done he wanted to keep playing games but I got him out of the chair and off to the treasure box. He struggled to pick what he wanted, but finally settled on some flying thing.

Then we were off to school. Levi was in a super happy mood this morning and we were skipping thru the parking garage. Sometimes his mood shocks me, not many kids would skip through a parking garage after having just gotten stuck in the arm.

Counts took forever to come in today!! Over three and a half hours after I signed us in the labs finally came thru. For a STAT lab! It drives me BATTY!! Anyways, counts are at 227. A great number overall but a HUGE drop from Thursday. Also his Abs Segs are way up, almost doubled since Thursday which is not a good sign for us. Looking at the graphs (yes I graph every single part of his blood work back to platelet count) every time his Abs Segs go up, his platelets fall off. So we will be watching him closely over the next few days hoping that things level out, but I am not holding my breath!

March 15 - Blood Work

March 15 - Blood Work

After a somewhat relaxing morning we headed to the lab. Levi was in a much better mood today and so was I so that definitely helped our morning run smoother. We got to the hospital and checked out his fountain, it's still only running from the bottom which is not making Levi happy, so we headed over to see P. As per usual lately there was no line or waiting and I signed him in and then he went right out back. P had a student shadowing her this morning who I think was a little taken back when Levi came running in, but she smiled. Levi gave her a look like "why are you here? You aren't my P!" But then he saw that P was at her desk and he smiled and was happy. Once again he picked out a PJ Masks band-aid, this time we got Cat Boy.

The draw itself went great as per usual. P really is very skilled at what she does. Levi didn't want to stop bleeding today and we ended up having to put a piece of cotton under his band-aid to hopefully help it stop bleeding faster. That's not usually a good sign for Levi. I hope our counts are still ok.

Then Levi was off to the treasure box. He had troubles deciding what he wanted today, he kept saying he wanted something new but ended up picking out Silly Putty again. I hate that stuff! But he loves it, so we allow it at the table only!

Then he was off to give P her hug. She opened up her snack drawer to let him pick a snack. He looked up at her, closed the drawer and said "Nope I don't need a snack, I have money for the Donut Lady today!" and was very proud of himself. We headed over to the donuts. They are gearing up for St. Patrick's day so everything was green which made Levi very happy.

We have been working with him on money and reading it, so while we waited our turn Levi and I talked about the donuts being $1.25 and how he has his paper money with 1 on it and that is for the $1 and then there is a dot and then his round money is a quarter which is worth 25 and that is for the 25 part. He is starting to get it, and it's fun to watch his little brain work.

When we got up to the front of the line the Donut Lady came out for her hug which Levi happily gave her and then he handed her his money for his donut. She let him pick out which one he wanted, which of course was the one with more sprinkles on it. As she was bagging it up Levi saw the St. Patricks Sugar cookies and he said "What are these?" and pointed to them. She said "They are sugar cookies with green sprinkles" and handed him one for free! She really loves the little bugger. The whole way to the car he was clutching his cookie and saying "she gave me the cookie with the most sprinkles. the most green sprinkles. it matches my jacket. The cookie with the most sprinkles mommy!" and "This cookie is sooooo big! It's going to take so many bites to eat! It might take me days to eat it!" He was very excited.

Once I got him bucked in he wanted his donut to eat! He is saving his cookie for on the way to swim class tonight.

We headed off to school and I dropped him off with his friends. His counts came in a little after 9am at a count of 295. A 66 point drop since Monday, but still an amazing number, and at this point 2 weeks post infusions we are expecting drops with the hopes that he will level out in the high 100's.

Next plan: Blood Work again on Monday! Have a great weekend everyone. And please all pray for no more snow!

March 12 - Blood Work

March 12 - Blood Work

Due to the snowstorm we only made it to the lab once last week, so it will be interesting to see what counts are today. We got to the lab and Levi's fountain was sorta working. The water was coming out the bottom but not coming all the way down the state of New Hampshire. He seemed ok with this, but asked me when they were going to fix it the rest of the way.

We got over to the lab and has become our new norm, there was no line and no waiting. Levi was a delay fish this morning and we were in a bit of a hurry, so I was glad we didn't have a wait.

P had found PJ Masks band-aids over the weekend. She said she didn't know who they were but was thinking that Levi might like that. He was over joyed by them. Of course this first day we had to find Gekko.

The draw itself went ok. Not the smoothest, but not bad at all and it was over before you could blink an eye. Levi was off to the treasure box. P gave him the bag of cars that Grammie had donated to the treasure box and he got to put them in. He was very excited by a few of them. I thought that he was going to pick the green truck and for quite awhile he had it in his hand, but in the end he decided on the yellow monster truck.

We headed out to the fountain again and I opened his truck for him because he had asked so nicely and I was feeling bad that my words all morning had been "come one" and "hurry up" and "get those little legs a moving!" since I was running late! I hate the day after the time change. I swear the next few days are the worst!

Levi's monster truck needed to go for a tour of the fountain and I let it go for a short one.

Then we were off to school. It was a super quick drop off and I jetted to work hoping to make it on time, but ended up being 5 minutes late to my meeting, thankfully I wasn't the last one to arrive. Counts came in super early this morning, only about 20 minutes after we had left the lab. Some days they are right on the ball. His count today was 361! An awesome number. We will never know how high he went as we assume in the past week he went closer to or even in to the 400s before dropping back down today, but in the end it doesn't really matter. His counts are good and that's what matters!

March 5 - Blood Work

March 5 - Blood Work

Happy Monday! We are now over a week out from the major drop and hoping that today will continue to bring the increase that we were seeing last week. Today is crazy hat day at school and Levi anted to wear his Rocky hat!

We got to the lab and he picked out his band-aid and had to have a paw patrol band-aid to go with his whole paw patrol outfit.

He climbed up in the chair and was in a good mood waiting for P to come over.

The draw went fairly well and we were off to the treasure box before we knew it. Levi found an avengers glow stick and was excited by it!

Then it was off to school and to wait for counts to come in. By 12:30 counts still hasn't come in and both Jay and I were getting frustrated. Jay took it upon himself to call medical records and get them to fax the results over, which they did right away, but there fax is so horrible its hard to read. After debating the results we came up with a count of 366. At 3pm the real fax results came in (still have no idea how it takes them so long to fax a stat lab) and the actual count is 368. A great number and an awesome increase from Thursday. In the end we definitely made the right decision last week to not give Levi another infusion. It was a stressful decision, but the right one in the end. Hindsight makes everything 20-20.

March 1 - Blood Work

March 1 - Blood Work

We got up again this morning and headed to the lab. Grammie came along again and Levi was super excited that she was coming.

We got to the lab and P had told us yesterday that we needed to register again the next time we came. It's been a year since his last new lab slip! Wow! Doesn't seem like its been a year. It's really nice that P just handles getting it refilled for us so we don't have to call and deal with all that. We were sitting in the registration room getting everything all set. Levi never understands why he can't color on the pad that I sign on, I try to explain it to him but he just got frustrated. P heard him in the room and since she had no one waiting she got the tablet all set and brought it over to him to play while we finished registering.

We got finished registering and headed over to the lab and Levi picked out his band-aid and immediately started playing the train game again.

The blood draw went better today then it had yesterday, which is generally a good sign that things are looking better. He was off to the treasure box before we knew it. Mom and P talked about the treasure box as Mom would like to donate some fun things to the treasure box in order to take some of the burden off of P. P was very touched that she would do that!!

Levi pawed around for awhile and finally settled on a truck toy.

Since Levi's counts had gone up yesterday we decided to attempt to send him back to school today. If counts came in later lower then yesterday then we would rush right back and get him, but he has already missed three days at this point and we would like to get his life back to normal for him, and he really wanted to go to school. Counts took a little while to come in, but they did finally come in at 166!! Trending in the right direction! Hopefully things will continue and he wont pick up anything at school today.

February 28 - Blood Work

February 28 - Blood Work

Today is the day of truth, the first day of knowing if we made the right decision yesterday or not. Levi is still very pale today and not really himself. Also he is starting to bruise (pretty typical for him 48 hours after a low drop is when we start to see the random bruising, I think it takes that long for them to come to the surface).

Mom was coming to blood work with us this morning for the first time ever. Will be interesting to see how Levi behaves with someone else there and how the draw goes.

We got to the lab and Levi went right to see his fountain, which still wasn't working. He was very upset that it wasn't working for Grammie to see!

Then we headed into the lab. He picked out his band-aid and climbed into the chair. He started playing a new game today, a train duplo game. It was cute.

The blood draw went ok! Not the greatest draw he's ever had, but he is still a little dehydrated from the past few days, and that always throws him off.

Once the draw was done he was off to the treasure box. P had found D'Angelo and Levi was super excited!! He immediately picked that and we were out of there.

We stopped at Dunkin Donuts on the way home to get breakfast for everyone and to kill sometime. I wasn't going to head to work until counts had come in.

Counts came in about an hour later at 121! That is quite the increase from yesterday! Hopefully the increases will continue and we did indeed make the right choice yesterday.

I headed off to work and left Levi and Grammie reading a space book on the couch! Hopefully they will have a great day together.

Next Steps: Blood Work again tomorrow to make sure that things are continuing in the right direction.

February 27 - Clinic

February 27 - Clinic

We got over to the hospital and got checked into clinic. The receptionist is so sweet to Levi and knows that he always wants a "key" even though he isn't an adult and doesn't need one.

We got out back and Nurse A told us that she didn't have to do height and weight because we had been in patient yesterday and she could just use those ones. It's interesting that clinic will use the height and weight from in patient, but in patient will not use the height and weight from clinic even on the same day! Because they weren't quite ready for us yet Levi headed off to the playroom to play.

After a few minutes of playing it was back to the Jungle to get blood work done. Since Levi was already accessed this only took a couple minutes. We had the new nurse, Nurse St. She is very nice and seems super sweet. She is younger and interacts with the kids very well. She is replacing Nurse T who left a few months ago. We will always miss Nurse T but it seems like Nurse St will be a good replacement.

Then we were off to the playroom to play again while we waited for results to see what his counts had done over night. Levi bounced all over the place playing with everything in the playroom.

When we first got into the playroom there had been a little girl playing doctor (one of Levi's favorite things to do) and he had gone up to her and asked "can I play when you are done?" It was so well spoken, but of course the little girl said No. Eventually however she left the playroom and Levi was able to play all the doctor he wanted too. They had run out of a lot of supplies but Jay went and asked Nurse A for some and she freely handed over band-aids and wipes and other supplies. I love that they let the kids play with the actual things, it definitely makes it less scary.

Finally the counts came back at 68. A nice increase but still a low number. On the drive up on Sunday Jay and I had talked about the fact that lately Levi's counts have been all over the place when we have given him more then one infusion. What has been happening is that his counts go crazy high (for him) and then come crashing down just a few weeks later, almost like his body says "hey I got all this plasma now I don't have to do anything!" so we had discussed requesting that the doctors only give one infusion and then seeing what happens. Of course with a count of 25 after the first infusion that wasn't a choice. But with a count of 68 we were faced with that choice. Dr. K would definitely give him another infusion, or we could go home and wait and see. This was a very difficult decision to make. I know that we had talked about it in the car and that on paper only giving one seemed like a good idea, but in actuality taking home a child with a platelet count of only 68 who had just dropped/gotten sick for no known reason seemed really scary. Jay and I talked about it for a while. Dr. K came back at one point in the middle of our conversation to help walk us thru things, not picking a side, but walking thru both options. This is just another example of how scary USS is. We have no medical background and yet we are making serious medical decisions for our child. There is no specific protocol for USS, in fact every one I have talked to (all like 4 parents who have kids in the world that I have found) have different courses of treatment for a kid with low counts and just in general. There is no right or wrong answer, and there is no way to predict what the right outcome is.

In the end Jay and I decided to not give him another infusion and instead to go home. However we would be doing blood work every day as well as having my Mom come down to the house to watch him so that he could stay out of school and away from as many germs as possible. This was a scary and emotional decision for me, and for the first time ever I actually ended up breaking down at the clinic. Only one other time have I cried at the hospital and that was January 2016 when all hell broke lose. Usually I save any break downs I have for home when Levi is in bed and can't see it, I need to stay strong for him.

After we made this decision we talked to Dr. K about it and she was fully supportive of that decision but she would have been just as supportive of a decision to infuse. Jay and Levi were in the room reading a book while I talked to Dr. K about this decision as well as about a few other general questions we had. 

After a few minutes Nurse St came in to deaccess Levi. We used the spray which made him giggle, but it really helped to get it all off.

Then Levi asked if he could go for a wagon ride, and since we weren't in any big rush to get home we said for sure. So we went around and around the circle a few times.

Then Levi picked out a snack, which of course was popcorn, his go to snack lately. So we popped the popcorn and then we headed out.

Levi put his key in the slot and we were officially out of there.

We got into the car and he immediately wanted his snack! It's good to see his appetite is back!

The rest of the week is going to be fairly stressful as we determine what his counts are doing. I'll be heading to Biddeford tonight to pick up Mom from Martha and then they will be home together tomorrow while I go to work. If his counts go down at all or level out then we will be back for an infusion at the end of the week. So we are just waiting now. Hopefully all will go well and counts will go up.