October 10-11 - David's House

October 10-11 - David's House

At the conclusion of Vacation, Levi, Mommy, and Grammie headed for David's House instead of going home. Daddy and Grampa headed to our house as they had to work. We are very grateful that Grammie was able to come along with us.

We stopped for dinner on the drive up and arrived at David's House earlier then normal. We got all checked in to the cow room and then headed off to play. Levi had brought trains with him to donate too David's House as they have a pretty awesome train track, but no trains. So we all set and played trains for a long time. Then played with all the other toys. It was relaxing and fun!

Before we knew it we were off to bed. Levi fell asleep so fast it was crazy. Usually it takes him awhile to fall asleep at David's House since it's a different bed and everything, but not today, it was less then 5 minutes and he was out cold. Mom and I headed upstairs to relax for a few before heading to bed ourselves. Everything was going well until about 4am, when the alarm clock started going off. Levi had been playing with it earlier and apparently figured out how to set it! We finally got it turned off, but that woke Mom and I up.

Levi slept in until about 7 and then was ready to go. We all got up and got dressed before heading up to breakfast. Then we were off to the hospital.

Thanks again David's House for being here for us! We really love our home away from home! See you in 3 weeks! :)

October 7 - Blood Work & Ear Infection

What a night!!! I finished packing for our trip and climbed into bed at 1am. Levi had already been up twice at that point, but I figured he was just hearing me move around a lot and would settle down, but sadly that was not to be the case. At 1:30 he was up! Screaming!!! Crying! Yelling! It was awful. By 2:15 we had bounced between our bed, the couch downstairs, his bed, had a drink, been under every different blanket. At that point I was pretty sure he had an ear infection. He was telling me that his ear hurt and his ear was quite warm. We had given Tylenol at 12:45 when he was yelling, as at that point I had thought it was a night terror, which he commonly has when he is in pain, so we medicate during them. So at 2:15 there wasn't anything more I could give him for the pain, and the Tylenol should be fully working in his system. After another round of jump from bed to bed and drink and potty and just yelling and screaming I was exhausted. At 3:00 I finally got him to sleep in our bed. Awesome!! He's sleeping!! For 15 minutes! After that he was up screaming and carrying on again. This wasn't a good start to our weekend. Either Jay or I needed to be able to Drive to Pennsylvania later that day, so we needed at least a few hours of sleep. At 3:30 we gave him Benadryl and by 4:00 he was sleeping. I knew that I would be getting him into the pediatrician the next day, so I e-mailed out of work at 3:30 in the morning. I figured the Benadryl would work for a few hours, and that I would wake up a little before 8 and call the pediatrician when they opened at 8, and then wake Levi up in time for his appointment. But, that was not to be my luck either! Levi was up and screaming at 7! I got him into the bathtub thinking that would keep him entertained and distracted from the pain for a few minutes, but even that didn't do much. By 7:20 he was shaking uncontrollably in the bath from screaming so much. I got him out and dressed, gave him some more Tylenol and we headed towards the doctors, because I knew that the car would be a place where he can settle and not thrash at least because he is in his seat!

As soon as the office opened at 8 I called. The earliest time they could see him was 9:30. So with some time to kill, and the fact that at this point I was only about 10 minutes from the doctors we decided to go do blood work, just to make sure the infection hadn't tanked his system too much.

We got to the lab and walked in. Uh Oh, not a good start, P was out and there was a wait! At this point, the Tylenol had kicked in, and Levi was acting a little more like himself. Still pretty fussy, but mostly himself.

When it was our turn to go in the nurse, who we had never seen before, seemed a little confused by his paperwork, and the fact that his results get faxed to multiple places. I told her, that that was correct, so hopefully everything would be done right in the system.
The draw itself went fantastic and we were off and running to the treasure box before I knew it. Levi was a little indecisive, but ended up with another paddle and ball to play with in the car. He wanted to stop and play with the fountain, so we stopped and played.

Then it was time to head over to see his pediatrician. His actual doctor, Dr. S, didn't have any openings in the practice so we saw Dr. A instead. We got their, and Levi was acting like nothing was wrong (thank you Tylenol for kicking in, but I swear kids are just like cars, you take them to the doctors and they are all smiles and giggles and make you seem like you are lying).

Playing in the waiting room. Cranberry had to come in with us as well! 

Dr. A saw Levi and confirmed that he did indeed have an ear infection in his right ear. It wasn't a horrible one, and he thought that one dose of antibiotics for 5 days should easily take care of it. But to call him back on Monday if things weren't better. He also said to keep him medicated on Tylenol every 4 hours around the clock for the next 24 to 48 hours, that it didn't make sense to let his body go up and down on Tylenol, and that after that we could ween him off it and see how he was doing with the pain on his own. Since we were there anyways, we got his flu shot too! :)

Levi and I headed to Wal-mart to get his prescription and a few last minute snacks for the drive to Sesame Place and we headed home to wait for Daddy to get home so we could leave. We got home and were hanging out upstairs because our Maid was still working downstairs, when Levi found my secret supply of chocolate in the bedroom and ate several pieces of it.

At this point I was surprised Levi's counts hadn't come in yet, as usually the fax only takes about 40 minutes. Jay called the lab and they apologized and faxed it over. Levi's count was 98. Ugh! A 35 point drop in less then 24 hours is not good!! Well now what are we going to do! We are supposed to be leaving for Sesame Place in less then an hour, a trip that Levi has been counting down too for over a month! Jay and I talked and decided that unless Dr. V was completely against it that we would like to continue with the trip as planned and keep a careful eye on him. He was on antibiotics now, so that should help his body not need the platelets as much and should drastically slow down the use of them.

Jay got home and we were on the road. We were about 2 minutes from home when Dr. V called. Jay and Dr. V had a long call where we basically all came to the same conclusion that waiting until his scheduled infusion on Tuesday would be ok, however if we noticed anything we were to call and could either get into the CHoP or drive straight through to the CHaD. About 5 minutes into their phone call Levi made an odd noise, and I looked back and the poor guy had puked all over himself and his car seat! I turned around and we headed home to get him cleaned up! This was not a good thing. Dr. V told us to watch for that with the antibiotics as well and to call with any questions or feelings that were off, we could always just talk through them on the phone. He was also going to let the on-call doctor know what we had talked about.

So after a late start, a strange day, and a low count, we were on our way to see Elmo!! And I am so glad we did! Levi had a blast! The memories of that weekend are amazing and I wouldn't have wanted to deprive him of those happy times with his cousins and family!

We do send our thoughts and prayers to Chris, Martha, and the kids as well as the whole family with the sudden loss of an amazing lady during that weekend . RIP Judy!

October 6 - Blood Work

October 6 - Blood Work

Today's labs were a little more stressful then normal. Levi was having a rough morning and was in a typical 2 year old mood and couldn't make a decision about anything. The first melt down started with which band-aid to choose. He wanted a sesame street character, but for the life of him he could not decide which one. We finally picked one, but it was mostly me forcing it on him. We got up in the opposite chair then normal as another nurse was helping an elderly lady in our normal chair. I think this through Levi off a little, because he wanted nothing to do with labs! His right arm was still bruised from Monday, so P decided to use his left arm, not a decision we make normally as it usually wont give blood easily. But P being as amazing as she is was able to get it on the first try. :)

Levi was still very unhappy about his band-aid, so P gave him two! That seemed to make him smile! Cookie Monster and Ernie were smiling at each other, which Levi thought was funny!

Then it came time for the treasure box, and once again it was next to impossible for Levi to make a decision. We finally settled on a ball and paddle. I told him it was a fun game that he could play in the car, so that made him happy. Here he is trying it out for the first few times!

Levi's counts came in around 10, at 133. :( Not the number we wanted to see, especially knowing that we were going into a long weekend away; a 67 point drop in 3 days, is not a good thing. Hopefully it wont drop any lower and we have an infusion on Tuesday!

October 3 - Dentist

October 3 - Dentist

We had been talking about the dentist with Levi and he had watched the PAW Patrol episode where Alex and Chase are scared of the dentist but then learn its ok several times to prepare him. We were definitely hoping he would be more cooperative this time then last time!

He did amazing!!!! Here he is climbing up in the big chair!

The dental hygienist was great with him. She noticed that he had on his Ninja Turtle sneakers and she went and found him a Ninja Turtle toothbrush, which just totally made his day.  He opened his mouth wide for her to count his teeth, and stuck his tongue out at the right time.
The dentist then came in and needed to count his teeth and look at them and he opened wide for him too!
Levi has all 20 of his baby teeth and they all look great!!

The only minor melt down we had was after the dentist left they hygienist wanted to polish/brush his teeth before she painted the fluoride on. She asked him what flavor he wanted and he picked bubble gum and then she got out her special tooth brush and he wanted nothing to do with that, he started crying and said "no, use mine, use my mingen (ninja) turtle one!" And she happily did! So that made him happy again.

He got his picture on the big cavity free wall again, and actually smiled for a nice picture this time!

We will be back in 6 months :)

October 3 - Blood Work

October 3 - Blood Work

Decided to continue to do blood work twice a week just to make sure that counts were continuing to go in the right direction! Plus Levi loves going to P's Work, before we go to Nursery School so there really isn't any fight from him!

The blood draw went quick and simple as usual! :) Levi picked a slinky from the treasure box because it was green and yellow! He was having a blast playing with it!

Counts came back at 200!!! Yay! First time we've seen that number for a few weeks! So that makes us super happy! Levi is back to doing great!! Now lets just hope it stays that way as we have vacation coming up over the weekend!

September 29 - Blood Work

September 29 - Blood Work

Today's blood work was super fast and easy!

Counts came back at 162!! Yay a 36 point jump from Monday to Thursday we will take it!!!

Here's a cute picture from yesterday to make up for the super short blog post! Levi got to pick out his own ice cream and picked one that was as big as him!

September 26 - Blood Work

September 26 - Blood Work

The weekend went well and there was no over concern that required us to call the on-call doctor. He did sleep a lot, so hopefully his body is trying to fight off whatever he has. But he had fun too. We got to spend some time with Grammie and Grampa and even go to a birthday party for one of his friends from Nursery School.

We did debate the birthday party, but in the end decided that he has had 2 infusions this week so why deny him from doing something fun. We can only shelter him so much! He already has some sort of cold or virus, hopefully he wont pick up anymore, but he could pick up something from us at home too. So we took him. And I am glad we did. He had a BLAST with all his friends!

Blood work this morning started like most of them. We got there and got signed in. Levi saw that it was P and was very excited by that. There was a little bit of a wait, but nothing crazy, and Levi "drove" the chair and was a ham for the camera!

Once we got inside the blood draw went easy peasy! We were on our way to the fountain before you could say blood draw! Levi picked out a yellow ball from the treasure box, which he thought would be fun to put in the fountain, so that caused a little bit of craziness, but all was good, and Levi, me, and the ball made it to the car.

Jay and I had decided that we weren't going to take Levi to Nursery School until we had his counts back, just to make sure that they were going up and so that we could tell his teachers that things were going well, or so we could decide to not take him if things weren't going well. It takes about 40 minutes to get the fax with the numbers on it, longer if they have to do a blood smear, which they perform if any of his numbers come back low and they need to confirm them. So Levi and I went over to Friendly's to enjoy some breakfast, and a little Levi & Mommy time!

Drinking his chocolate Milk

Eating his breakfast!

Enjoying some breakfast Dessert!

His counts finally came in, and they had gone up. They were at 126! So going in the right direction. Still in the "danger zone" (less then 150) but definitely headed where we want them to be. I dropped Levi off at Nursery School and told his teachers what was going on, and to call me if they saw anything suspicious or he was having a rough day at all.

September 23 - Infusion #16

Today started very early in the morning! Because I needed Mom to help me with this last minute change in plans it wasn't possible for us to go up the night before, so we were up and moving at 5am. At 6am I swooped Levi up out of his bed still in his PJs and placed him in his car seat, hoping that he would go back to sleep for at least part of the drive. But that was not to be the case. He was WIDE awake and talking for the whole drive. :)

We stopped at the rest stop about 20 minutes from the Hospital to put the numbing cream on Levi's port. He did great, was a little confused why we were doing it in the car, but he let me put it right on no problem.

We got the the hospital and changed Levi into clothes and then headed in. We pulled in to the parking garage at 7:59 for an 8:00 appointment. Couldn't have asked for any better then that. We registered at the desk and then headed down to the pedi wing. Levi was very excited to have a 'key' (the purple badges they give the adults to keep track of where they are)! We got out back and Nurse K was there. We talked to her for a minute about what was possibly going on. And pretty much we all just said we didn't know and it didn't make sense at all.

The plan was to access his port and pull blood work and then not start anything else until that came back (to make sure that he hadn't gone way up over night or it wasn't a systemic lab error at our lab, or something else). So we got his port all accessed and then headed to the playroom to play. Levi was definitely coughing and sneezing more today then some days. Levi had a blast playing in the playroom with Grammie and showing her where everything was again!

Nurse A overheard me telling Levi that the markers still weren't available for the white board and she came in and found them for us. So he had fun coloring on that for awhile.

Levi's blood work came back and his count was 84. So we made a good call to come up and get another infusion. Since the count was not below 50 we would not be being admitted!! Just another infusion and then home for monitoring.

They got the Benadryl started in the playroom and we pushed that through in 5 minutes instead of 10 accidentally, but Levi did fine with it. Then we had to wait for that to start working before the plasma can be started. Levi wanted to stay in the playroom and continue to play and he was doing very well with sitting and playing with only a few toys at a time. We did about 10 puzzles before he got tired of that! Then he played with the little people house and plane and had a good time with that.

Nurse K brought his plasma in when it was ready and we started that in the playroom as well since he wanted to stay. They even did his vital sign check in the playroom! The nurses are so accommodating for the kids, it's so nice! After a little bit he was getting more and more crazy in the playroom so Mom and I made the decision to take him back to his room and see if he would settle. We got him a snack and some juice and he set in the chairs all by himself and we turned planes on.

For a few minutes it seemed like he might fall asleep, he even asked for a warm blanket (usually I have to kind of push it on him).

But sleep was not to be in our cards! Once Planes finished he asked for the "Crazy People" so we put that on and he started to get a little crazy himself. He didn't want to sit still anymore, he was just kinda crazy. We got him some Mac&Cheese and that settled him for a few minutes, but he was definitely over this whole sitting thing.

Finally the last buzzer went off and the infusion was done!! We de-accessed his port and headed out, making sure to put his key in the box! (his favorite part!) We put him in the car and thought he would quickly fall asleep. But again that was not to be the case. We got off the highway in Concord and since Levi was still awake Mom and I thought we would stop at half-way McDonald's for lunch/dinner since Levi hadn't eaten lunch, and Mom and I hadn't eaten anything at all. I looked back at Levi when we were about 8 minutes form McDonald's and he was still wide awake. I looked back when we were about 5 minutes and he was sound asleep! Good timing kid, good timing! So we drove the rest of the way home.

Plans: Monitor Levi closely over the weekend and call the on-call doctor if we see anything out of the ordinary. Do blood work on Monday to make sure that his count was rising instead of falling.

**Thank you Mom for coming with me! I wouldn't have been able to do this day without you! I really really appreciate it!!**

September 22 - Blood Work Take 2

September 22 - Blood Work Take 2

I left work at 2:00 and headed to get Levi at Nursery School. I knew that he would be napping and I would be waking him up, so I was fully prepared for a very cranky toddler. I got to Nursery School and teacher J was like "do you need him?!" I said yes and briefly explained why. She went upstairs to get him from nap. He was very excited to see me and was cuddling with Cranberry. I asked her a few questions about how his day went. Questions a parent wouldn't normally ask (is he weak? falling a lot? complaining of headache? eating? swallowing correctly? drinking ok? talking normal?), and I think I kinda freaked her out a little as she seemed a little stressed and had a look on her face. I told her we would keep them in the loop and Levi and I headed out the door.

We got over to the lab and P was shocked to see us! She asked what was going on and I briefly explained it to her as well while she was doing the paperwork. We also made sure that the fax number had been correctly updated on the order (it had). Levi and I set down in the chair to wait. He picked out a transformers band-aid and was pretty excited by it, even if he did think it was McQueen or Elmo (it was a red transformer, I don't know their names, we aren't at that stage yet!) I was very glad that it was P working as I knew she could do it well, and I knew she would be going in through the same vein that hadn't heeled in just 6 hours, so it was going to hurt a little more then normal. Levi did it like a champ! A little flinch. And he looked right up at P and said "Ouch! That hurt P!" as if it was her fault and she should cut it out. We all giggled a little, but I think inside P was a little hurt (Levi is her buddy!)

Then it was time for the treasure box and P was so excited. She said that a couple has decided that they want to fill the box for the kids and they had dropped off their first shipment of stuff today since we had been there. And that no other kids had been in so Levi was the first one to get to pick out of it. Levi ran over and opened the box. Wow!! It was packed! With all kinds of stuff, dolls, stuffed animals, balls, coloring books, crayons, paint, it was really neat! Levi looked at the big stuff, and then started to dig down, I don't think he thought he was allowed to take the big things. Once I told him he could, he landed on a paint set and was super excited about it. We gave P a huge hug and said, See you on Monday!

Levi telling me what each color is (hence the blurriness)!

Levi asked for a donut. I was going to say no as I didn't think they would have any left at 2:45 in the afternoon, but we walked over. He must have spotted them from across the room because when we got over to the cafe there was one donut on the top rack in the very back of a tray, I got down to his level so I could guarantee that he couldn't see them and said "look the trays are all gone" and he looked right at me and said "no mommy, sprinkle donut up there" and pointed to the bottom of the one tray left in the display case. So of course he got a donut! :) Wasn't much I could say at that point.

Levi and I headed to Daddy's work to wait for the fax to come in. We got there and it wasn't quite there yet, but Levi had plenty of fun walking around the shop. Finally the fax came in and the count was 81. Definitely not a lab error. His white blood cell count had also almost doubled since the morning. He is definitely fighting off some sort of an infection. We called Dr. V and together we all made the decision that it was probably not going to get better on its own, and the best course of action was to bring Levi back up for another infusion tomorrow.

At this point Jay and I had to figure out what our plan was, after a few seconds of talking it made the most sense for us both to call our Mom's and ask for help. I called my Mom to come and help me with the infusion, and he called his Mom to see if she could help with getting him to and from his procedure. Both Mom's were able to help!! YAY! A little less stress for us! Now to make the decision on if Levi should go to swim class or not. (We did take him, and he had a good time!)

September 22 - Blood Work

September 22 - Blood Work

We always do blood work 2 days post infusion just as a precautionary measure to make sure that everything is still good and nothing is going on. We have talked before on if it's really necessary or not, and always determined that it is better to be safe then sorry. Well! As you will read in the next few posts, I will never ever question doing blood work 2 days post infusion again! And it is absolutely necessary!!

Today started out like any other day. Levi excited to see P before going to Nursery School. We got dressed and headed down to the lab. We got to the lab and there was a lady already in with P. So we had to sit and wait. Levi was being a little goofball. He wanted to "Drive" the buttons and was all giggles.

Then we worked on emotions some. I think we caught some cute ones on film. He really likes to take selfies, because he can see himself in my phone.

Finally it was our turn to head in. Levi went running right in and grabbed the last candy band-aid. (if anyone even sees more Candy Crush band-aids feel free to pick them up and I will buy them off of you!) P worked her magic and got Levi's blood work on the first try without him moving or me hardly even holding him. She just has a way of knowing where that vein is and she hits it. :) Blood came no problem. And Levi was off to the treasure box. He picked out a skateboard and a green fish to ride the skateboard and we were out the door. He ran to the fountain and decided that his skateboarding fish needed to be a swimming fish. We had a talk about that not being ok.

Levi asked for a donut and I said no and we started to head for the door. We got almost to the door when Levi declared he had to go potty. Uh-oh. Levi is doing really well, but once he says he has to go you sometimes only have seconds to get him there, and he was only wearing undies today. So I scooped him up and practically ran to the potty. We made it in time!! :) We headed out of the hospital and were on our way to Nursery School.

On Friday, we had gotten the final crossed t's and dotted i's to get the results faxed to us! YAY! So I was expecting results shortly. When they didn't come in, I was frustrated but not overly upset as we were just 2 days off of an infusion that had been done at a high number. At lunch time when we didn't have results I called the house. The machine said "You have 18 new messages" umm.. what?!?! I listened to message number 1 "beep... beep.... beep", then message number 2 "beep...beep....beep", ok I am done listening I know whats happened. I called Jay and said "um.. the hospital is trying to fax our house". He gave them a call and they got the phone number straightened out and faxed the results to us.

A few minutes later Jay skypes me, "umm... we have a problem" I was thinking the fax had come in wrong or something. Nope, fax came in fine. Count was 85! That's right 85! We haven't seen numbers like that since January!

Jay gave Dr. V a call to discuss our options and what we wanted to do. He was as confused as we were, and figured it must be a lab error. The platelets can clump together in the tube if the blood isn't run as quick as it needs to be, or its taken wrong. I really didn't think that was the case as it was our best lab draw in weeks. Dr. V recommended redoing blood work in the morning and then we would make a plan. Or we could re-do it that afternoon if we wanted too.

Jay and I discussed the options and both determined that we didn't think it was a blood work error, and that we wouldn't have a good night without knowing what was going on. We called the lab to see how late they were open (and we could get a stat test done). I talked to my boss and said that I would need to leave at 2, to get Levi from Nursery School and take him over. I also called my mom to put her on alert that I may be needing her help. If this number is indeed as low as it seems then we would be heading to Lebanon. Jay has a procedure on the 23rd that he can't miss and I really can't take Levi to an infusion by myself, so I would be needing help to be with me for an emergency infusion and with Jay as he can't drive.