November 14-15 - David's House

November 14-15 - David's House

After we left the hospital we headed back over to David's House. That was a first for us and Levi was a little confused what we were doing, but he was excited too. We got there and Jaye immediately met us at the door and was concerned for Levi. She wanted to know what had happened and how Levi was doing. They really love him there.

Levi was excited that we were back and went right in to play and make his volcano again while I waited for the paperwork and key. Then we headed back up to the space room. I felt bad because they had completely cleaned the room since we weren't coming back. Sorry guys! Thanks for giving us back the space room, it worked out well for Levi.

After we hung out in the room for a few minutes we decided to go find a mystery that was within walking distance. It was cold out there so we didn't want to stay out for long, but thought it would be a nice surprise for Levi to do something a little different. He was excited to find it and open it.

Then we headed back inside so we wouldn't get too cold. We decided to run a load of laundry so had Levi put on his PJs and then let him spend some quiet time on his tablet. He hadn't napped today and wasn't feeling great so some quiet time was good for him. Jay and I also took a few minutes to relax. You wouldn't think it would be a hard day as all we do is sit at the hospital, but it's emotionally and mentally draining all day and definitely takes a lot out of you.

Then it was time to head to dinner. We decided to go out tonight to Jesse's. Usually a great resteraunt, but tonight was just not on point. We got seated out back with a bunch of large parties so it was crazy loud and very dark, our waitress was not having a great day and was not very helpful, and wouldn't serve us dessert to go except the cheesecake because she wasn't willing to scoop it out of the dishes (we have always had waitresses that had no problem doing that before). It just wasn't a great fit!

Levi scooting down the stairs to go to dinner.

When we got back to the house Levi was happy to go back to playing in the living room. I needed a few minutes to myself so went up to fold the laundry and get it out of the dryer. Jaye was staying over night and knew that I needed a few minutes, so she asked Levi to be her special helper and of course he was happy to help. So he walked around the whole house and closed all the empty bedroom doors (they get closed at night to become fire doors), and since the house was mostly empty he had a lot to do. He had fun doing it! 

Then he spent some more time playing with the toys in the living room. 

It wasn't long before it was bed time. We took a few books upstairs and put on our PJs and climbed into bed. We read the books and got silly which Levi loved. Then it was sleepy time. I headed downstairs while Jay stayed up to give him a rub into he fell asleep (at Levi's request). It wasn't long before Levi was asleep and Jay was downstairs.

I was exhausted so headed to bed not long after Jay came down and he came up later. Thankfully Levi slept all night in his own bed!!

The next morning he was up around 6:30. Him and I headed downstairs for breakfast. He had ordered chocolate ice cream the night before at Jesse's and we had put it in the freezer and I told him he could have a special treat for breakfast. I grabbed the icecream and opened it for him and lo and behold it's vanilla, thanks crummy waitress. He was ok with it, but he kept saying "mommy I ordered chocolate!", Yes Levi you did!!

We headed upstairs to get dressed and get his button cream on. I packed up/gathered up the suitcase but we were going to leave it in the room just in case we were staying longer, then Jay could come back over later and either request the room longer or get our stuff.

We headed out of the house at 7:20 to head over to the hospital.

Thanks again for everything David's House. Thank you for making things so comfortable for Levi when we had to stay an extra day. Thank you for giving him his space room. Thank you for making life a little easier in the stressful situations. You really are an angel here on earth.

November 14 - Infusion #33

November 14 - Infusion #33

We were running a little behind this morning so we parked in the first parking spot we could find which happened to be on yellow. Levi wanted purple badly, but I told him we just needed to find a spot. We got inside and got registered. The receptionist remembered that Levi likes to get a key, which made him really happy! I was shocked she remembered since it's been 12 weeks since we last registered with her, but she did. It was pretty cool!

We got inside and the jungle room was full. We were told we could either have room 10 out back or have the fish room. Levi picked the fish room, which was nice. I was hoping that having the beds would help Levi take a nap! We did our work with Nurse A. He kept the O2 sensor on his finger for the first time ever and we didn't have to use a sticky one! And we got his blood pressure on the first try. Then he was off to play in the playroom for a few minutes before Nurse K was ready to see him. He got all accessed which was a pretty quick and easy process and sent his blood work off to the lab. Dr. C had also ordered labs for his thyroid and we got those done at the same time! It's nice that they are in the same DH system so that they can order labs an we can have them done anywhere.

After he was accessed we were off to the playroom to play while we waited for labs to come back. If his counts had gone up by a lot we would not be doing an infusion. I didn't expect that to happen, I don't think anyone did, but we had to check. So we spent a bunch of time in the playroom playing.

The doctor came in to talk to Levi. It was not Dr. V but instead a doctor that has worked under Dr. V in the past. He is nice enough, but the whole conversation was a little weird. He came in the playroom and set down. He asked us a few intermittent questions, but mostly just set there and watched Levi. He didn't really interact with Levi at all, pretty much just set there. I even had Levi come over and sit with me for a second so he could do his exam, but he didn't, he just set there. After about 15 minutes he said, "well I will just examine him when he's in his room" and left. It was very odd. For the record we never saw him again! And he never came and examined Levi.

Levi was very proud that he put this whole puzzle together by himself. He hasn't been doing puzzles well lately, so doing this one made him really happy.

Levi was getting tired of being in the playroom and took a wagon ride to the snack drawer and then to his room to eat a snack. It wasn't long after that, that Dr. Ch came in and told us that Levi's counts were at 38! I think we all just set there in shock. How had they dropped from 105 to 38 overnight. It didn't seem possible. We haven't had counts that low since January of 2016. It was crazy! And Scary! So of course with a count that low we were definitely getting an infusion. They brought in his Tylenol and Bennadryl and got that started.

Levi watched the Emoji Movie and "drank" his popcorn. He was in good spirits and enjoying being able to push the buttons on the bed and go up and down.

After the Bennadryl had kicked in they brought up his plasma and got that started. Dr. Ch came back in and we talked about future plans. We have no way of knowing if one infusion will be enough, and from past experience we don't feel it probably will be with a count that low, so we had several options, we could go home after this Infusion, do blood work Wednesday morning and possibly/probably come right back up, or we could stay over in Lebanon again and then come over Wednesday morning to do blood work again here and then head home in the morning if an infusion isn't needed, or do an infusion again. We decided that staying over would be the best plan. I contacted David's House to see if they could get us in for another night.

Levi was doing really well watching his movies. It was lunch time and Jay asked Levi what he wanted to eat, Levi said Pepperoni Pizza so Jay went to Sbarro as well as the cafe. Levi and I cuddled and switched the movie over to Cars. And waited for our lunch to be delivered by Jay! I thought Levi was going to fall asleep until he suddenly had to go pee, and he really had to go pee! It was crazy.

After lunch we told Levi that he needed to lay down to take a nap or else we would have to take a nap at David's House. I climbed in his bed with him and we cuddled. He wasn't overly happy about it, but he sorta did it. We had about 40 minutes left of the infusion plus 90 minutes of waiting post infusion so it would be a good nap for him. He was able to get up from his "nap" 4 times by saying that he had to go potty, and he did actually go each time! But it was a bit of an excuse as well.

Dr. Ch came in with about 10 minutes of the infusion left and we told her that we were for sure staying at David's House overnight. She said that since we were only going to be about 2 minutes away from the hospital there was no need for us to hang out after the infusion. So we stopped making Levi nap, as it didn't make sense.

When the infusion was done Nurse K came back in and said it was our choice if we wanted to leave Levi accessed for tomorrow morning or if we wanted to deaccess him and then reaccess in the morning. We made the choice to deaccess him as it would be just my luck that he would pop the needle out overnight and I didn't need that!  So Nurse K deaccessed him and we were free.

Levi requested to go to the playroom so off we went. He wanted to finish/read again the book that Jay and him had been reading earlier.

Jaye from David's House had responded to my e-mail that of course they had a room for us, and that since Levi had to stay again they would put us back in the space room! Levi was so excited!! And was ready to go! He practically ran down the hallway.

He put his key in the box and said "see you tomorrow, well not you, but your friend"! He is so smart to know that he probably wont get the same key again.

Saying goodbye to his key!

We headed outside to get the elevator up to the yellow floor and there was a huge line for the elevator. Since we weren't in any rush we decided to walk up the stairs. Levi was a trooper up all those floors.

With one infusion done his numbers are hopefully going up. We will still be very cautious tonight as his counts were so low. Hopefully he will sleep more!! and that tomorrow's counts will be better!

November 13-14 - David's House

November 13-14 - David's House

Once Jay got home we got on the road to David's House. The snow made for a long drive. Jay drove up and there were patches of over an inch of snow/slush on the ground and patches of bare road. It was a long and rough drive, but we made it. I can't believe the snow curse of David's House started already. I swear that every time we head to David's House in the winter it snows. It will be a beautiful week and then we have to head up and it snows a blizzard.

We didn't stop for food on the way up as there was dinner at David's House, but Levi did have some snacks on the way up. About half way up the following conversation happened.
Levi - "Mommy I'm thirsty"
Mommy - "Ok Levi, what would you like green juice or lemonade"
Levi - "My applesauce"
Mommy - "Umm... I thought you were thirsty?!"
Levi - "I am! For Applesauce"
Jay and I had a good giggle about that, but he happily set and ate his applesauce pouch and continued watching his movie.

When we got to David's House, we went in to check in. There was a new volunteer training on the check in process. It was actually a new process so it took a few minutes but we got all signed in. Kim told us that we would be in the Pig room and Levi pouted. So then she said, "hold on, you guys are only here for one night. Let me see what I can do" and she pushed some buttons on the computer and all the sudden we were in the Space room and Levi was jumping up and down excited. He went running up the stairs before we even had the keys!

Then we came down to have some dinner. Some boys from the college had made spaghetti and meatballs and Levi was excited. He ate pretty well for him at David's House after the drive. He is generally just so tired of sitting from the car that he doesn't want to sit and eat. But meatballs got him to the table! He ate 5 meatballs, some pasta, some bread, and some peas! I was pretty happy with that!

Then he was off to play. Since Jay and I were still eating he played in the living room. He made this whole tower all by himself and was pretty excited to show it off. The picture doesn't do his smile justice. He told us it was a volcano that he had made. 

Jay and Levi then headed down to the playroom to play while I set at the table with Kim and the volunteer and talked about stuff. We talked about some of the families who have recently gone home. It's always nice to hear about NICU babies that finally go home. The house was pretty quiet! Which is always nice, for several reasons, I don't worry as much about Levi running around and being crazy, but also because the emptier the house is the less families who need it, and that is always a good thing.

Jay had some ingress friends drop by the house, so they stood on the porch and talked! (brrrr....) While Levi and I played games in the living room and then headed upstairs to play. We played with Chase in the space room for quite awhile.

Then it was time to get ready for bed. We read stories, mostly the space book! And then he climbed into bed. We said good night and then Jay and I headed into the hallway to wait for him to fall asleep. It had only been about 5 minutes when Levi came stumbling out into the hallway and asked for a rub. Jay went in and gave him a back rub and a cuddle until he fell asleep.

Then we headed downstairs for some quiet time before bed. Hindsight is 20/20, but I should have gone to bed at the same time as Levi for the night that was coming. Levi woke up at 2:40. He climbed into our bed for a little while, then wandered back to his bed. Then I layed in his bed for a few minutes giving him a cuddle because he wanted it. When I thought he was mostly asleep I crept back to my bed, but that was a bad move, because he wasn't asleep yet. Then it was Jay's turn, who laid in his bed for 20 minutes or so, then they went to the potty. At this point it was 4:20 and both Jay and I were exhausted. When they came back from the bathroom, I kicked Jay out of our queen size bed and told him to climb in Levi's twin bed and go to sleep. I told Levi to climb into our bed and I held him until he finally fell asleep around 5:15! What a Long night!!!

Thankfully Levi slept until 7:30! When he woke up I gave him his tablet and headphones for a few minutes so that I could wake up a little more before facing the day.

Then Levi and I headed downstairs for breakfast. I gave him what I thought was apple sauce. He spit out the first bite and I told him that wasn't ok. He said it was yucky. I told him it was apple sauce and that he like apple sauce, only to find out that it wasn't apple sauce but instead some sort of pureed mango sauce stuff. Yea I agree with him, it was yucky! But I did have him eat all of his Rice Crispies. He was double fisting his drinks! Couldn't decide if he wanted to drink from Strawberry Shortcake or Doc McStuffins.

We had a few minutes to kill before our 9:30 appointment, and Jay was still sleeping, so Levi and I headed downstairs to play. We cleaned up a giant mess down there that someone else had made so that we could get to the slide and desk. Levi was a great helper with cleaning up even though he hadn't made the mess. Then we played at the desk and colored.

Levi had fun playing with the clip board!

In the middle of playing with the crayons and clipboard, Jay woke up and came downstairs so he played with us for a few minutes.

After we were done coloring we played tower and slide. Levi always giggles at that. And we had a blast as a family.

Then it was time to get ready to go. Levi and I headed upstairs to get dressed, do button cream, fill in the thank you envelope, and pack up. Jay went to the kitchen to eat breakfast. Levi was awesome with the button cream, laid right down flat and kept his arms at his sides. Then we got him dressed and he played in the mirror while I got everything else done.

We read one more page in the space book before heading out. We said goodbye to Jay and the volunteers and headed over to the hospital. We don't know when we will be back! But don't worry we will! David's House is our home away from home and we are so grateful that they are there for us always!

November 13 - Blood Work

November 13 - Blood Work

Good Morning! We had a fairly quiet weekend with Levi's counts being low. Did some mystery hunting, had a PJ day, made a solar system, and lots of playing! We got over to the lab this morning. Levi's fountain was running and he was very excited about that.

We got over to the lab and there was a wait as there is most Monday mornings. Levi struck up a conversation with the older gentleman that was sitting next to him. They got to giggling which was fun to watch. When it was Levi's turn he headed in to get his band-aid, and to check that his picture was still on the wall. He was very happy to see that it was. P told him that his picture would be on the wall forever and that made him grin!

After he got his band-aid open he headed over to the chair. He asked P if she had her tablet, which she did, and he settled in to play.

The draw went awesome as always! And we were off to the treasure box before you could even shake your head. He dug around for awhile and finally settled on a green squishy guy. He calls it Rhino Dino. And he kept making it make a huge bubble and then would tell me it "pooped". Oh, the joys of living with a boy!

Auntie Martha, Check out my space bear shirt!! I love it!!!! :)

Levi asked for a donut, but I told him no and we were off to school. We got to school and headed upstairs to his classroom. He went running in with his jacket on, I was calling him back to the hallway to take it off when his teacher started coralling him out into the hallway. I thought she was just going to make him take his jacket off, but nope, she wanted to talk to me. She explained that half of the schools teachers were out with a stomach virus, that they were also short a ton of kids, and that a little boy had just gotten sick and they were working on calling his parents. They of course can't tell us that he can't be there, but I like that they are very very open with us about any and all sicknesses going thru the classroom. I made the split second decision that there was no way he was going to school. With counts at 141 on Friday and no idea what they were today I just wasn't going to risk that. Stomach stuff is not good for his platelets. So we turned tail and left school!

Levi didn't understand what was going on. This was one of the first times that I really had to explain things to him. He knows that he gets blood work done and sees Dr.V and wears a medical bracelet, but he doesn't really understand. So we had a talk about that his numbers were low, and that his friends were sick, and that Mommy needed to keep him healthy and therefore we were going home. He still didn't quite get it, and he can be very negative, so he took it to the full extreme that his numbers were low and he would never be able to go to school again, that it was closed forever. We had a long talk about it, and I think he was starting to understand.

We were driving from his school to Jays work in order to talk about the plans for the day, when Jay called to tell me that blood work had come back and his numbers were 105! Not good. That would definitely be a trip to Lebanon tonight for an infusion tomorrow. We got to daddy's work and Levi went running in to play. Since Jay and I needed to make some important phone calls, Jay's co-worker and our friend Roz took Levi around the shop to play. Even giving him a rolly chair ride all around the shop!

We called Dr. V and Receptionist S blocked us as per usual. We left a message with Nurse J. Then we called David's House to see if we could get a room for tonight. While I was on that phone call, Dr. V called back so of course I missed that call. Then we called Receptionist S back who was annoyed that we had missed the call, but finally got thru to Dr. Ch who wanted to see Levi in clinic at 9:30 Tuesday morning for repeat lab work and an infusion. Then we called our back up daycare to see if all of those kids were healthy, but they weren't, so the decision was made that I would just stay home with Levi for the day, thankfully I have the option to Work from Home when needed. Then we called gynmastics class to get him moved into a make up class on Thursday as he wouldn't be able to make class tonight.

Then Levi and I headed home. We spent the morning playing, working, watching TV, and hanging out. He took a nap after lunch. When he woke up from nap it was snowing and he was so excited. I couldn't deny him going out, but I didn't want him to get sick, so we were only out for about 5 minutes. But he had a blast!!

Next Plans: Head to David's House tonight for an infusion tomorrow!

November 10 - Blood Work

November 10 - Blood Work

Today was kind of a weird day. We started the day at Auntie Martha's House. Yup we went up on a Thursday night and came back on Friday. We needed to all be together to book our Disney cruise or as Levi likes to call it "Mickey's cruise boat"! He is very excited. It could be a long year and a half before the ship sails!

We got to the lab around 11:15 and there was quite the line. I was shocked. I figured that would be a quiet time, but it wasn't. Levi and I settled in to wait! He took some selfies before playing Toca Kitchen. So I present to you the many faces of Levi after being in the car for 90 minutes!

Then it was our time so we headed in. Levi picked out his band-aid and then climbed up into the chair.

He was being a goober!! The blood draw went great as always. P really is a miracle worker! Then he was off to the treasure box. He picked a Ninja Turtle, but had a whole discussion with P about the fact that it was Michaelangelo and that Donatello is his favorite, and asked her why she hadn't gotten Donatello too. It was cute!

Then we were off to school. Levi asked for a donut, I told him no, and then we had a whole discussion about that there were no donuts left because it was lunch time. He seemed ok with that because he would get lunch at school as soon as we got there.

We got to school and rushed inside expecting him to make the last 10 minutes of lunch or so. But his class was ahead of schedule, and they were all already laying down for nap. Oops. I thought he would throw a fit that he was hungry, but he didn't. He went right in, got out his mat, gave the substitute teacher a dirty look because she was sitting where his nap mat is supposed to go, but as soon as she moved, he gave me a hug and layed down. His teachers told me that night he was asleep within minutes of me leaving. Guess his cousins wore him out! And thanks Auntie Martha for the Dunkin Donuts this morning so that he had eaten something!!

Counts came in a little while later at 141. Not great. Still an ok number for our new levels, but at this point in the past we would be heading to Lebanon for an infusion, so it is definitely going to be a long weekend of carefully watching him and staying home or away from lots of people so that he hopefully doesn't catch anything.

Future plans: Blood work again on Monday. And probably packing a bag Sunday night with the expectation that we will be headed to Lebanon on Monday. I don't expect his body to pull back from this, but who knows, he has surprised me a lot in the last 11 weeks.