December 30 - Blood Work

December 30 - Blood Work

Since Levi's lab is a standing order we don't have paperwork and therefore must always do his blood work at the lab at the hospital where his standing order is, we can't use any of the satellite offices, also his labs are stat and most of the satellite offices can't handle stat. I looked up the hours of the hospital lab for Saturday since I knew they had limited hours, it said they were open 6:30-11:30 so we headed down to the lab once Levi got up. We arrived at the lab around 8:40ish, and we walked in to it being pitch black. Umm... This isn't good. I checked online again and it did indeed say they were open so I was very confused. We headed to the front desk to ask what to do, and the guy at reception had no idea, so we headed to the ER to ask them. The girl at the ER said that she would go and get our paperwork and asked our name. I assumed she would be back in just a minute or two so we didn't sit down but did let Levi play with the ER toys. This was the first time he had ever been at the WD ER so was fascinated by the different toys.

He had fun making up games, and we drove to get chinese food (not sure where that came from!) and so that was fun. It took forever for the lady to finally come back and she said "I found your labs, if you want to head down to the main lobby someone will be right out to help you". Umm... I thought you were going to go get our labs so that a nurse here could help us. But I guess not, so we headed out to the lobby to wait. Thankfully the lobby was very quiet as Levi was bouncing around and being a crazy three year old. He asked if he could get a donut, but the cafe was closed. He was a little confused by this, and tried to get into the cafe and told Jay where the donuts were kept. He said "but they are right in there! The Donut lady gives them to me! We can just go in there in get one!" It was cute. After another few minutes a few nurses came down, one of whom I recognized, and we headed into the lab with them. Levi went right in to get his band-aid like he owned the place.

 The one nurse seemed a little taken back by that, but the other nurse was the one that had done his blood work on Thursday, and had done it previously, and she was perfectly cool with him just taking over. She even found the tablet and the unlock code for him so he could play!

 Once the blood draw started it went pretty smoothly as always. Levi spent more time watching the nurse then he does P. He kept glancing over at her to make sure she was doing the right thing. He checked her out, and every step she did out, with the look of like "I know what you are supposed to do and if you don't do it the right way I will let you know!"But he never had to say anything.

After the draw was over we made sure with them that the lab downstairs that actually does the testing was working fully staffed and things would get sent as usual and they we were on our way out. We stopped in the lobby to button his shirt sleeves and put his jacket on.

 He had picked an art project from the treasure box and was pretty excited to be able to do it later!

We got out to the car and asked if he could do the art project in the car and when I said no he couldn't do sand art in my car he threw a tantrum and pouted with all his stuffies until we got to McDonald's drive thru for breakfast !

Since w were headed out of town for a family Christmas celebration we grabbed breakfast and gas and did a quick drive thru Jay's work to check the fax machine and then headed out of town. We figured that the hospital would call us if things were really off and otherwise we would get the fax when we got back to town around dinner time. We got to our family celebration and were having a great time. I was checking my phone quite constantly until around 1:30. At that point I figured that numbers must have come back ok and they weren't worried and would call us later or had left a message at home.

But around 2:20 I missed a call from the hospital! Nope, numbers weren't great. They had fallen to 130. A 50 point drop in 48 hours. Not good at all! So we are definitely headed to Lebanon on Monday for Infusion on Tuesday and probably Wednesday. We talked to the doctor for a few minutes about what the week would hold and wanted to make sure that everything would be good. She asked us about the weather and such. We also talked to her about the fact that Tuesday and Wednesday are clinic days so if we can stay at David's House we don't have to get admitted, but if we end up there on a Wednesday and Thursday or a Friday and Saturday or something we would have to get admitted and that is harder on Levi and beds have been scarce at the CHaD lately (never a good thing!), so it make sense to come up the beginning of the week.

I am still shocked that his counts have dropped so quickly! I am so confused on why this has been happening lately. They seem to skyrocket and then plummet. We are only 4 weeks out from the last 2 infusions, I don't know why his counts aren't leveling out like they used too. It is very very strange.

I called my Mom and asked if she could go to infusion with me, which she said she could we would just have to figure out when it made the most sense to come down and how it made the most sense. Jay will skip this  infusion to work instead.

So now we are headed up on Monday for infusion on Tuesday and blood work Wednesday morning for possible/probable second infusion on Wednesday.

December 28 - Blood Work

December 28 - Blood Work

We got to blood work today and Levi requested that Joy and Disgust come in with him so that he could show them all his special places. Since I was feeling pretty crummy myself and I knew he wasn't feeling the greatest, I said sure! So in they came!

 The first place we had to show them was the fountain of course!

 They needed a closer look! He wanted to make sure they saw the water.

 Then we got over to the lab. There was no line or waiting but also no P. Uh Oh! Levi went right in to get his band-aid and to show Joy and Disgust where the band-aids were. He decided not to pick a crazy people band-aid because he didn't want to have to pick which one and make the other one sad! So we picked Bugs!

 Then we were off to open the band-aid. Joy and Disgust had to sit on the arm rest so they could watch the blood work happening.

 It took a few extra minutes to do the paperwork then we are used to with P so Levi was clowning around. He was pretty excited and super happy!

 The nurse came over and P had talked to her about Levi so she had the tablet! That made Levi's day! I am not sure if P wasn't there at all or if we just happened to miss her on break, but Levi was excited to have the tablet. He played the crazy people game because he thought that Joy and Disgust would like it.

The blood draw itself went off without a hitch and was done before we knew it. and Levi was off to the treasure box. He picked a small pink spinner and was happy with that.

Then we were off to the car. On the way out he asked if he could get a donut and I said no, that he had gotten a donut at the last four blood works and he didn't need one today. He was upset but didn't throw a fit like I thought he might. We hurried out to the car because it is freezing cold here! I was buckling him into the car and he looks at me and goes "Mommy! I am a little confused why I couldn't get a donut!" I tried to explain it to him again and he just said "Yea I'm a little confused!" I didn't have the energy to explain again, so I just used a line I try very hard not to use with him and said "well because Mommy said No" and he looked at me and said "Ok!" I was shocked! Then we were off to school!

Numbers came in a little while later at 180! Wow! 359 to 180! A HUGE drop! Almost 50%! I was shocked by the drop, but not really too upset by the number as 180 is still a great number. I wasn't expecting anything to come of a number like that. A few hours later my cell phone rang from the hospital. I was a little shocked as usually the nurse calls the house phone and leaves a message knowing we aren't home (though I was working from home!) and they only call my cell phone if its more critical to get a hold of me. The nurse told us that because of the huge drop they wanted to see us on Tuesday for an infusion. I was floored!! Jay and I talked on the phone about what our thoughts were. We were both shocked that they wanted to see us. We didn't think we were going for an infusion until we were less then 100, and we were talking about an infusion at 180! Jay called them back and talked to the doctor about her thoughts on things. We ended up coming to the conclusion that we would get on the schedule for Tuesday, but that we would do blood work again on Saturday to see what our counts were and cancel on Tuesday if counts stayed high. The doctors and nurses all seemed ok with this plan, so that is what we settled on! So now we are doing blood work on Saturday!

December 21 - Blood Work

December 21 - Blood Work

We got to the lab and there was no line no waiting, which seems to be the new norm! It's quite nice. Levi had P's Christmas present and was so excited to bring it into her. He gave it right to her and gave her a big hug and said "Merry Christmas". Then he went right in and Levi picked out his band-aid and then climbed up for tablet time. He loves that tablet.

 The blood draw went easy peasy lemon squeezy! We did go back to using his right arm, but using the inside vein instead of the outside vein. It works great. Levi wasn't a huge fan of it. When P put the needle in he looked at her with little sad eyes and said "ouch!" I thought it was gonna be the undoing of P. She looked really sad. That was all he said. Then when she pulled the needle out, he gave her the pouty look and said "That hurt!" she gave him a big hug and said she was sorry! He was off to the treasure box.

 He picked out green play dough and was excited. Many of the things in the treasure box have started to be green!

Then we headed over to the cafe to see Donut Lady as she wanted to take a picture of Levi with the bag that he gave her full of cookies, so of course I told Levi he could get a donut. We got over there and Levi got down to pick out what donut he wanted. He stood up with a sad look on his face and told me that there weren't any sprinkle donuts. Then he went to look again and said there still weren't any. He was very sad. Then the donut lady looked over at me and said "I saved him one cause I only had one today and knew you guys were coming!" What a sweet lady!

After we bought his donut we waited for a few minutes and then the donut lady came out to take his picture as well as to give him a Christmas presents of special cookies that she had made and a gift. He was so excited! And it was so sweet of her!

Then we were off to school. Levi enjoyed his donut on the way to school. 

Levi's counts came in a little while later at 359! A great number still. A drop since earlier in the week, but still an amazing number!! Exactly what I needed going in to Christmas! We need a good holiday and a great number will be a big part of ensuring that.

December 18 - Blood Work

December 18 - Blood Work

Happy Monday!! We got to blood work and there was no line no waiting. I like this whole no waiting thing! Levi went right in and got his band-aid, and then climbed up into the chair to open it.

After how bad Thursday's draw went with his vein, P and I have made the decision to go to his left arm instead of his right for a few months. We think that the scar tissue will break up if his arm is given a break. Levi wasn't overly excited by that until we told him that meant he got to keep his right hand to play on the tablet! Then he was happy.

P got set up on the other side to do the draw and it didn't go well. She put the needle in and couldn't find the vein. She had to dig around to find it. Levi even said "ouchey!" Once she found the vein it didn't want to give blood and even stopped several times. We were trying to keep Levi as still as possible but he isn't a very still child. The needle went thru the vein and stopped giving blood. P said she was going to pull it back slowly and hope that it caught again, she got it to give some more but not enough before it popped out of the vein completely. P looked heartbroken when she looked at the tube and it didn't have enough blood in it to send to the lab. She actually said "Well that was a failure! We are never doing that again!" and then looked at Levi who was happily playing on the table and said "I have to do your other arm buddy, I didn't get enough". He was like "Ok". Then she said that he could pick two toys from the treasure box since she had to poke him twice and he said "nah, thats ok. I only need one" What a sweet kid. The right arm went as well as it's been going. Easyish stick, but still harder to find the vein the it used to be and to stick it.

Once she had enough and was one Levi was off to the treasure box. He has been eyeing these stars that play twinkle twinkle little star for almost a month now. Originally there had been 3 of them. Now down to just 1. He made the choice and thats what he took. I asked if he was going to give P hugs today and he said "Nope!" so I said "high fives" and he said "nope. nothing today. maybe next time!" P looked sad, but then said, I get it, I stuck him twice, he's not happy with me!

As we were heading out she asked if he could have a mini cupcake. I think she wanted to do anything she could to make him feel better. I said sure and he picked a chocolate one. We headed over to the cafe as the Donut Lady had wanted to take a picture. Levi set at one of the tables to eat his cupcake while I waited in line.

Once we got to the front of the line he ordered his donut! The Donut Lady was sad, as she had forgotten the bag. I told her we would be back on Thursday. What's one more donut?! We got his donut and headed to the car. He was excited to eat it!

When we got to school I did tell Levi that if his arm hurt he needed to tell his teachers to that they could ice it to hopefully keep the bruising down, and did tell his teachers that he had had a rough morning. But he had a great day at school. And neither of his arms bruised at all! That's what high platelets will do.

And are they ever high. They actually went up between Thursday and Today. His counts are now at 438!! And his white blood cell count has gone down. Still slightly high, but closer to in range now. WOO HOO! Looks like we will have a great Christmas after all.

Next steps: Blood work again on Thursday as one more check before the Holidays!!! Hope everything stays good. I need him healthy to travel and enjoy Christmas!

December 14 - Blood Work

December 14 - Blood Work

We got to the lab and there was no line no waiting, so Levi went right in to get his band-aid and climbed up into the chair to open it.

The draw was a little rough. His right arm has some scar tissue and the needle doesn't like to go in the vein and P ends up having to kinda dig around. Levi kinda gives her a look but he doesn't cry or move, so thats nice! He is such a big boy. But P really hates having to do it to him. The look on her face as she is digging around in his arm to get the blood flowing is more heart wrenching then watching his face. She does care about him! She really loves him.

Then we were off to the treasure box. Levi dug around in there for awhile and finally came up with some finger fighter dudes.

Then we headed out. Levi looked at me and said "Is it Thursday?" I said "yes" and he said "YAY! You said we could get a donut on Thursday". Umm.. yup I did... but that was before Donut lady gave you a free donut on Monday. I only said that because I didn't have anything but a 20 dollar bill on me on Monday and I didn't want to cash that for $1.25. But never one to go back on my word if possible we headed over to the donut case!

The Donut Lady was so excited to see him. She was raving about the bag that the cookies came in and asked when we would be back as she wants to get his picture with the bag. Thanks Oriental Trading for the bags :)

Counts took awhile to come in today, but when they did they were at 417!! Woo Hoo!! I haven't seen counts like that in 18 months! The only negative is that his white blood cell count is high! I hope whatever is causing that to be high does not bring his platelets down. I need him to be healthy going into the holidays, and I need next week to be normal so that I can get stuff done.

Next Plans: Blood Work again on Monday!

December 11 - Blood Work

December 11 - Blood Work

Good Morning! Happy Monday! We had a busy Sunday making cookies. Sunday morning Levi's elf, Blueberry, brought him cookie mixes and bags to make cookies and deliver them to his friends that are local. Two of those bags said P and Donut Lady so we brought them with us today! Levi was very excited to deliver them. He must have asked me 12 times on the way to the lab if I had the cookies for P and Donut Lady.

When we got to the lab his fountain was working so he was excited to see it.

Then we went running to the lab with P's cookies. Thankfully there was no line because Levi went running right in to give them to her and say "Merry Christmas"!

Then he picked out his band-aid and climbed up into the chair to play on the tablet. He was excited to play the fishy game! It always makes him giggle.

The draw went well for the most part. Levi shook a little when the needle went in and came out, not something he usually does. P said she could feel a little scar tissue and had a little trouble getting the needle into the vein, but in the end got it, and Levi didn't make a noise, just played on the tablet. Then he was off to the treasure box.

He struggled to pick what he wanted but thought some things were pretty cool!

After the blood draw we headed over to the cafe to give Donut lady her cookies. He asked if we could get a donut and I said no that he had breakfast in the car, we were just giving cookies today. We waited in line and when it was his turn he went to the gate and handed the bag of cookies over to her and said "Merry Christmas". She was so shocked that something was for her. She picked him up and gave him a giant hug! And he probably weights a third of what she does, she is just a tiny little lady. Levi asked again if he could have a donut and I said no, not today, we could get a donut on Thursday. The Donut Lady said "can he h-a-v-e o-n-e?" I said "he can, I just don't have any money today" and she gave him one. She said it was her Christmas present to him. He was in second heaven. Said thank you! Gave her a big high five! And off we went to the car.

His counts came in soon after that at 290! YAY! We finally have gone up and life is back to normal. I am so glad that I don't have to worry as much anymore.

Next Plans: Blood Work again on Thursday. 

December 8 - Blood Work

December 8 - Blood Work

The last few days since we got home from his infusions have been relatively quiet. We spent some time at home and just relaxed. You wouldn't think that infusions would take a lot of energy out of Jay and I, but they do! Man are they exhausting!!

We got to the lab this morning and Levi was excited because his fountatin was working. He stood and watched it for a few minutes.

Then we were off to the lab. We got over there and there was no line and no waiting. But there also seemed to be no P. Uh Oh!! This may not end well. Levi went running right in for a band-aid.

Then he climbed up in the chair and waited. He asked the nurse if she had P's tablet, but she didn't. Levi was a little upset by that, but he handled it well. The blood draw went great! The nurse was so shocked with how well he did. Before I knew it we were off to the treasure box. Levi picked a Dory stuffie that he has been eyeing for several weeks now.

Then we went running out back to our fountain to say hi. They are all decorated for Christmas now and Levi loves looking at the trees as well as the fountain.

Counts took a little while to come in. When they did come in they were only 132. We are over the 100 point danger mark, but still not in a great place. That isn't good. Two infusions should have bumped him higher then that. Since we are over 100 we wont be headed back for another infusion today, but we will be having a quiet weekend at home in order to not expose Levi to anything if possible and hopefully his body will continue to make platelets over the weekend and his counts will be much higher on Monday.

Next steps: Quiet weekend at home, followed by blood work Monday Morning.

December 6 - Infusion #36

December 6 - Infusion #36

Levi was in a pretty good mood this morning for doing this a second day in a row. We had a little extra time this morning so we got to park on purple and that always makes Levi super excited. I hate having to drive all the way to the top of the parking garage, but Levi loves it, so I do it for him.

Waiting for the elevator on Purple. 

He ran into the elevator and was very excited that it was empty!

We got down to registration and he did a great job of sitting and waiting. He even got Shelley and Cuddly to sit and wait patiently with him. It was really cute!

Then we were out back. This is when it started to sett in for him that we really were doing it all over again today. He did ok getting his vitals taken, but not as great as yesterday. We don't have to do height and weight today as they don't assume it changed much in 24 hours. But we get blood pressure, temperature, and Oxygen level.

Then we were off to the playroom. He found his train and had fun playing with it.

It was only a few minutes of playing before Nurse K was ready to access Levi's port. We were doing the same plan as yesterday. Access port and send blood work downstairs to get counts before moving forward. This gives us lots of time to play. The access went great as usual. They have new giant IV3000's and that really helped the needled stay in without allowing the tagederm to touch his skin.

After the access was completed and the blood was taken we were back to the playroom to play. Levi bounced around and played with lots of different things.

Building his rocket in the correct order. 

Rocket all built

Then he found the car and was excited to drive it around. It's been quite awhile since he last drove it and it was neat to see how much more comfortable and skilled he was with driving with his feet. There was actually no worries about him running into people.

He took the car and ventured around the square.

Then he realized that he could take the car to the snack cupboard! He was excited by that.

Then he took the car right into Jungle room. This was the only open parking spot so that he could park his car and unload the trunk. He put all his snacks on the table and then took the car back to the playroom.

After driving he decided it was time to ride. But he couldn't ride in the two person wagon by himself so we had to take a baby with us.

Then it was time to play doctor. I love that they give the kids real medical supplies to work with. It makes everything they go thru more realistic and less scary. He accessed the baby and took his blood. It's neat to see what he remembers from getting his own done, and what parts he mimics when he is playing and what parts he doesn't. He also soothes the baby just like we do with him. It's fun to watch and listen too.

Then he asked for the markers to draw on the easel with. When Nurse K came in to get them from the drawers for him he saw the paint and decided that he wanted to paint a picture today. I said sure! So we got out some water colors and Levi went to town.

It wasn't long after he was done painting that Nurse K came in with his IV pole. Levi's counts had come back and they were at 66! So nowhere near a large enough raise to avoid another infusion today. Levi wanted to stay in the playroom and play so we got his Bennadryl and Tylenol hooked up in the playroom. The nurses are so flexible and all the parents and kids that are in there are so relaxed about watching a kid get meds or get hooked up, it's just part of life in the playroom.

Levi still hasn't learned that the IV pole means that he can't run around the playroom. So we post an adult on the pole and another adult with Levi keeping him as calm as possible. He did pretty well, but Jay had his work cut out for him keeping up behind him.

Jay was happy when Levi decided he wanted to sit and read instead of playing bus, until he realized that Levi wanted him to read the entire body book! It was cute to watch them read the book!

Soon it was time for his infusion to start, so Levi rode his pole to the vitals room to get another set of vitals before the infusion started. This is set number 2 of 4 for the day. He did pretty well sitting for these ones. Nurse S did his vitals and actually did a really good job explaining things to him, even showing him how the blood pressure cuff worked, unplugging it while it was blowing up to let the air blow on him so he could see what it did. He was excited to see it work.

Then we were off to our room for snack and a movie with the infusion. Levi requested a blanket and the dimmer light. We settled in for awhile. Levi requested Cars 2! A first ever!! and we got the movie started for him.

It wasn't long after the infusion started that it was time for Jay to head to the cafe to get lunch. Levi asked if he could go with him, but he isn't ready for that yet, and since his infusion had just started he would need his 15 minute check while Jay was gone. Since it was Wednesday instead of Tuesday the specials were different and Levi was excited to get a meatball sub.

After we ate lunch we talked to Dr. K for a few minutes about the plan. She said we would be going home today after the second infusion and doing blood work on Friday to see if counts had come back up. If they have then we will be good, if they haven't then we would be coming back on Friday for another infusion, but she doesn't want to do more then two in a row without waiting to see what his counts do. So with that information Jay headed over to David's House to get our stuff and check out of our room.

Cars 2 ended and there wasn't enough time left in his infusion to start a whole other movie so instead I gave Levi tablet time. He was excited to get to play!

Levi's infusion was done and Jay still wasn't back. I was just getting Levi's shoes on when Jay came rushing in. He apologized for being gone so long and said that he had stopped to talk to Jaye for quite awhile at David's House about the condition of the playroom and the adults in the kitchen last night. Levi was fine that Daddy had been gone and was just excited that he got to play in the playroom for a few minutes before heading out.

He used all the blocks in the truck to make a giant tower, almost as tall as him.

And then he knocked it over!!

Then it was time for a little dinosaur play!

And then it was time to head out. Levi was not as excited to be leaving today as he knew that we were going home and back to our regular lives and not over to David's House to play!

He put his key in the box!

And told his key to have fun with his friends and that he would see him next time.

We got in the car to head home. Levi ate his lollipop that had been in his advent calendar on Monday.

Then we stopped at the gas station to add to Levi's Teenage Mutant Ninja Turtle Beanie Baby collection. They had Michelangelo, Levi really wants Donatello, but they didn't have him. And we got a snack since he hadn't eaten much lunch.

Then we started the long drive home. We thought at one point that Levi might fall asleep, but he didn't, he just watched his movie the whole way home.

Next Plans: Blood work on Friday and hope that his counts have come up high like they did last time. Then we all hope that Levi doesn't get sick again and that these two infusions can last him longer then the last two did.