June 7-8 - David's House

June 7-8 - David's House

We arrived at David's House and Levi's mood seemed to instantly improve so that was nice! We got checked into the lion room and put our stuff down. Immediately Levi wanted to go out and play. I said sure, without even thinking about him running and jumping and falling. So we head outside, and I swear he hadn't taken 2 steps before he took a digger into the dirt. But thankfully nothing bruised or bled, so he just continued on.

He was climbing everywhere. There were several other little boys out on the playground and the three of them just kept each other going. They were both a little bigger then Levi and he was running hard trying to keep up with them, but it was fun to see him interacting with them and enjoying his time outside and with other kids. They were playing some make believe game and Levi was really getting into it with them, which is always such a joy for us to watch.

Levi really wanted to go in the baby swing even though he knows how to swing on a big kid swing. He was having a blast and giggling up a storm on it. Thankfully his bum isn't any bigger though or else he wouldn't fit very well. Getting him and out was quite a trick too. Thankfully he is pretty flexible.

While Levi was playing, Jay and I discussed dinner since there was no meal at David's House that night. Of course we weren't taking Levi to a restaurant. For several reasons, 1 - he couldn't sit still for that long in a public setting and 2 - we don't want to expose him to that many germs if we can help it when his counts are low. So we decided to order take out. There are only a few places that deliver, so our options were limited, but there is a pizza place that is really good, so we went with that.

We stayed outside and played while we waited for it to be delivered. Levi was having a blast!

Once food arrived we went in to eat. There was parsley on Levi's spaghetti and at first he wanted nothing to do with that and was refusing to eat, but finally we got some spaghetti on a plate that didn't have any parsley on it and he ate fairly well.

Then it was off to the playroom to play. Levi was running around and being a crazy man, but having a blast doing it. He was playing with every toy imaginable. Jay was spending his time in the playroom cleaning as the playroom was an absolute disaster zone. I don't know if parents were letting there kids just free for all down there, or if they just didn't care, or what, but it was awful. Every toy possible was out and spread around and nothing was organized.

Levi and I played blocks and relaxed.

Then we were being silly as a family and took some cute family photos. We added a few fella's to our family. Jay had a giraffe, and the giant bear and I were cuddling.

Then Levi and giant bear had a huge cuddle!

And then it was off to bed. Levi didn't want a snack tonight, so we headed right up the stairs to get ready for bed. We read stories and then I headed to the shower while Jay and Levi did bed time and then Jay moved to the hallway. By the time I was out of the shower Levi was out cold. That was one tired little boy as it couldn't have been more then 10 minutes before he was sound asleep!

I headed down stairs for a little adult time and Jay followed along as well. We had a little snack and then settled into the living room to relax. The house seemed very quiet! It wasn't long before I headed up to bed as it had been an emotionally and physically draining day and I was exhausted. I have no idea what time Jay came up as I was out cold long before then.

The next morning Levi was up bright and early as usual. I swear at some point I am going to convince that kid that an eye mask is a great tool, so that it will stay dark longer for him and he might sleep in. I attempted to get Levi to lay in bed with me and cuddle for a few, but when that didn't work we headed down to the playroom at 5:45. I had everything I could do to keep him quiet down there, but at least there aren't any rooms immediately connected to the playroom. We settled in with a few books, and then a few games.

Then we cooked for awhile. He brought me all kinds of yummy food.

At 7:00 Levi and I headed up for breakfast. The two little boys that had been outside last night were in the kitchen and they were all getting each other going. It was quite the chaos to keep Levi settled on eating and to actually eat a breakfast as they were running around and doing there own thing. It seemed like their parents had very little control over them. Eventually Levi had eaten enough and I told him he could go play while I picked up the kitchen and quickly finished eating.

Levi built a pyramid and wanted to show it to daddy. Since it was 8:00 and we needed to get moving I didn't feel bad at all for Levi going in and waking Jay up with his pyramid.

Then we all got ready and got packed up. It took a few minutes to get everyone moving and situated, but eventually we were all dressed in clothes and were headed out the door. We checked out, but I talked to Jaye about the possibility of us needing another night but that we hopefully wouldn't because of Levi's party. She said to give her a call as soon as we knew as the house was pretty full for the night, but that she would for sure get us in if we needed a room.

Then we said our good-byes and headed out the door!

Thanks as always David's House! We will be back! But hopefully not too soon!

June 7 - Infusion #42

June 7 - Infusion #42

Once Jay got home and we packed, we were on the road. Since it is Thursday there is no clinic, but Dr. C has arranged for us to have a room in the adult section for the day, and to have Nurse S, as she knows Levi. Not my favorite nurse, but at this point we will make anything work. We had also arranged to call DHMC when we got to exit 18 so that they could alert the blood bank to thaw his plasma, this would help with minimal delay, both for Levi's sake, and for the fact that it is much later in the day then we normally start this whole process.

With a couple of emergency potty stops, a stop at McDonald's for lunch, and an on the drive port cream application we had an eventful drive to say the least. But we made it! Of course Levi requested that we park on purple. We got to the top and he actually wanted to park out in the air part of purple. Since there is no threat of snow I agreed! And then we took the elevator down to floor 4. Spidey Bear was along for the ride today!

We got to registration and got checked in. It went a little strange but I wasn't 100% sure what to expect as things we weird today, so I let it slide. Hindsight is 20/20 and it was strange because the receptionist was tired and totally forgot to tell us where to go since there is no clinic and forgot to give Levi a bracelet. But we made it work. We headed back to clinic and found a nurse there who seemed very confused as to why we were there and then we wandered into the adult section and found the nurse's station and got settled in to our room. Levi was very upset that the playroom was closed! But they park all the poles in the playroom and charge them while clinic is closed, so even if someone had the key to get us into the playroom it wouldn't have been safe for Levi to play in there.

Levi likes the adult section because it has the fancy beds! And he immediately got started with playing with them! Levi and Spidey Bear went for several big rides.

And they were spending time playing with whatever they could get their hands on too.

The other thing that Levi really likes about the adult section is the food cart that comes around. He loves the snack cupboard in the kids section, but the food cart comes around to the adults with sandwiches, salads, and fruit cups. And then later comes back with dessert! The volunteer/candy striper that was working the food cart today was over joyed to have a kid and gave Levi anything and everything he wanted as well as giving Jay and I some stuff as well!

It wasn't long before Nurse S was in to get the Tylenol and Benadryl started. We were not wasting any time today. We knew that his counts were low and that an infusion was necessary so there was no point in waiting around.

Nurse S found us the key to the movies in the teen room so we were able to get some movies that Levi would want to watch. We started out watching Blue Clues Space. One of Levi's favorites.

After Benadryl Levi had spiked a small fever. We were unsure why, as he is now medicated and we hadn't started any plasma yet. Nurse S talked to Dr. C who said to continue on as planned. We pulled labs at this point as well just to double check that nothing crazy was going on. We got his plasma started and settled in.

At the 15 minute vitals check and rate increase Levi's fever had gone back down to normal, so it was either a weird spike, something to do with how he was laying, or a bad read. But all was good. Blues clues ended and Levi wanted his tablet instead of another movie so we settled in with that. It was going to be a long day it seemed. Things were moving quickly, but Levi was just not prepared for this. Usually he has some time to prepare as we come up the night before and go to David's House and have some relaxing time. He was not happy that we had come straight to the hospital and he made it very clear to anyone who asked that he was not happy.

 Levi's counts came back and his platelet count had dropped to 20! Not a great thing in just a few hours. We always see a slight lab difference between WD and DHMC, but that is a large percentage difference. A few minutes after we got those results Dr. C came by to talk to us. She asked if there was anything going on with him, we said no, he seemed fine and we were very shocked by the large drop. She said, well at this point the plan had been for us to discuss what you thought was a good idea, but now the plan is you need to stay over and we will see you in clinic tomorrow. We said that we had expected that and already had a room at David's House for the night. She seemed happy with that. Explained as per usual that if we saw anything off over night not to hesitate to call or go to the ER and that she would examine him in clinic the next day, as really she was in meetings all day today, mostly just popping out of them to deal with Levi as needed.

Levi was getting very restless at this point. And started playing with the table. We put another movie on but that wasn't holding his interest at all. Thankfully we were very close to done, because it would have been a long afternoon if he had been this antsy the whole time.

Finally the infusion was done and we were ready to be done. Nurse S asked if we wanted to stay accessed over night and we said no, that was too much stress and not nice for Levi. We discussed with her that the plan was to head to David's House for the evening. She reiterated that Levi's counts were low and we needed to keep him calm and safe as possible as well as exposing him to as little as possible. We said thank you and headed on our way.

Levi was tired and frustrated at this point. Getting him to go potty and get to the car was like pulling teeth. But we finally managed. We had two grumpy guys in the back seat for the long 2 minute drive to David's House.

Hopefully their moods improve before the night is over or else it will be early bed for everyone tonight!!

We will be back in clinic early tomorrow morning to see what his counts have done over night. Hopefully one more infusion and all will be good, since tomorrow is Friday and Levi's birthday party is on Saturday. He has been looking forward to it for months and I would feel so bad if we had to cancel it because he was sick. Of course, his health comes first, but as a parent I also do everything I possibly can to keep his life as normal as possible which includes trying to not have too many plans change if at all possible!

June 7 - Blood Work

June 7 - Blood Work

Good Morning All! This morning was a great day for us. Levi got up without a problem and the morning went well! We got to the hospital and Levi was checking out his fountain. Here he is trying to tell me he doesn't understand why people put money in the fountain.

There was no line and no waiting and we were in to the lab quickly. P did an amazing job as always and we were off to the treasure box before I could blink! Levi had a bit of a hard time deciding. But did finally settle on a toy.

Then he gave hugs and we were off to see the donut lady! We got over to the little cafe and there were no sprinkle donuts left! Levi was so upset!! So it was a drive thru dunkin donuts kinda day!

Levi was very sad waiting in the car for his donut!

But then he got happy eating his sprinkle donut!

Then we were off to school. Since we were a little later then normal I dropped Levi off on the playground as it was after 9 and they were already at recess. I got a little half hug and then he was off and playing and I was off to work.

The distance between Levi's school and my work is just 12 minutes. I had not yet made it to work when my phone rang. That is NOT a good sign. I was expecting counts to fall some, but was not expecting a massive fall. I answered the phone to find out that his counts were 55! Not good. Jay and I talked for a quick minute about the plan. Since he was already at work he was going to get on the phone with Dr. C or Dr. K and figure out the plan as well as getting us a room at David's House for the night, while I was going to rush back to school to grab Levi. He isn't supposed to be at school with counts less then 100.

I arrived at school no more then 25 minutes after dropping him off. He was outside playing happily and running around with his friends. His teachers took one look at me and knew that something was off. I told them his counts had fallen and we were on our way to the hospital. They were shocked and rightfully scared. They were watching him run around and act completely normal while his counts were plummeting. They asked me to keep them in the loop when I could and I said I would of course and then I grabbed Levi and we were headed home to pack and get on the road.

Levi kept telling me he was fine and he felt good, and that we didn't need to rush to the hospital that he wanted to play with his friends. This is some of the heartbreaking part of USS. There is no rhyme to reason to it, and Levi seems to feel fine, and yet we have to rip him away from things. Hopefully all will go well at the hospital, because we currently have a birthday party in just 48 hours!

June 4 - Blood Work

June 4 - Blood Work

Happy Monday!! It was a pretty good weekend! But here we are back at the lab. We got to the hospital and Levi was excited to see his fountain. We stopped and watched it for a few minutes. Then we headed in to see P. There was no line or waiting today so we went right in.

Levi was in a great mood and the draw went off super quick and easy. He didn't move at all, and barely got to play Thomas before we were done. Then we were off to the treasure box. There were all kinds of choices and he struggled to choose, but ended up picking a green maraca and a purple maraca so that Mommy and him could both have 3. Not sure how we are going to play 3 since we only have 2 hands, but I figure he will let me know how to play them! haha!

 Then we were on our way out. I didn't have donut money today so we just stopped at the fountain. He was very excited to see money in the fountain! He tried to take it out, so we had to have the talk again about fountain money not being money you can just have!

 On the way out Levi asked if we could visit his friend, the blue light. So we did. He was so excited. He had a full conversation with the light.

 Then he gave him a hug and blew him a kiss good bye!

 And told him that we would see him soon. It was adorable!

Then we were off to school!

Counts took a little while to come in today which was frustrating. I actually ended up finding the counts from the nurse who called my cell phone. Never a good sign when they call my cell. His counts were 153! So another big drop. Nurse J wanted to know if we wanted to schedule an infusion or wait. I said let's wait. The likelihood of his counts going back up is slim, but its always a possibility, so we will run blood work again on Thursday with the full expectation that we will be headed to Lebanon Thursday night for an infusion on Friday. Levi's birthday party is on Saturday so I am hoping and praying that either his counts go up or his infusion goes off without a hitch. That kid misses so much, I would hate to have to be in the hospital for his birthday party and have to cancel it. If everyone can think good thoughts for us that would be awesome!!!

June 1 - Blood Work

June 1 - Blood Work

Good Morning!! Happy Friday. Because of the Monday holiday we are a day off on blood work so we are here on Friday instead of Thursday.

We got to the lab and there was one lady waiting and a guy inside. We settled in to wait. Levi was being a goofball this morning.

 He settled down to play with my phone, but that didn't go well. He wasn't listening and was breaking the phone rules so he ended up getting the phone taken away and had to just sit for a few minutes. After his phone time out he got the phone back, but then P brought the tablet out to him and that is always much better for him. So he played Thomas.

 Then it was our turn. We went in and Levi was very excited to see P. He made me pick his band-aid today since he was already playing on the tablet. Then P came over and started doing his blood draw, and we had a good laugh when she realized that she knows what he needs so much that she was starting to do the draw without having put his order in. Oops. So she went over to the computer to put the order in and print out Levi's labels. She came back over and the draw went fairly well. Levi didn't move much but his blood just didn't want to come out today. She wiggled the needle a little and I held Levi's arm a little harder and straighter and we got it to come out finally. His poor little veins are getting so tired, and he has years upon years of this ahead of him.

Then we were off to the treasure box. Levi was looking at lots of fun things but ended up picking a set of purple maracas for me since they are my favorite color! He said that we could be in a band together because now he has green maracas and I have purple ones. It was really cute.

 Then we had a bit of a melt down because I didn't have donut money today, but it ended pretty quick when I said we could find a snack in the car for him. He picked apple sauce and happily ate it on the way to school.

I signed Levi into school at 8:57 and preliminary results (no LDH only CBC) came in at 8:58! It's only 13 minutes to school, so that means preliminary results came in about 20-25 minutes post draw! That's amazing. Final results came in around 9:30!! So a great results timing day! However not necessarily a great results day. Counts are down to 179! Another big drop. If this continues we will be at an infusion by the end of next week. Hopefully they will level out here, but who knows. I haven't worked a full week in almost 6 weeks, next week was to be the first full week, so it would be about right to throw an infusion in and cause it to be a short week too!

Next steps: Blood Work again on Monday to see where we are at. Fingers crossed that counts level out!