April 30 - Blood Work

April 30 - Blood Work

We got to the lab and Levi wanted to check out his fountain, so he went running over to it.

Then we headed into the lab and there was a line. Not overly long but a one person in front of us. Levi and I settled in to wait. He was being a goofball with pictures!

Finally Levi got called and it wasn't P! There were two people inside. A guy who we had never met doing the paperwork side of things and a girl who has drawn Levi before but whose name I couldn't remember doing the draw. They couldn't get the tablet working so I gave Levi my phone to play on. The paperwork took a lot longer then normal and they seemed very confused. But they finally came over to do the draw. The draw went about as well as could be expected when it was someone besides P. Then we were off to the treasure box. Levi had a hard time picking but ended up settling on a green shopkins apple figurine. We thought from the box it was one of those squish ball character things that are all the rage right now, but when we got outside and opened it in the car its a hard figure. Levi looked at me and said "what does it do?" I explained to him that it was just a figure. He kept saying it needed to do something and seemed a little bummed, but by the time we got to school the apple and cranberry had become friends and were doing head fives and tail tickles and Levi found something for it to do! HAHA!

We waited and waited but counts never came in. Around 2:30 we called medical records and they faxed the report over. It is definitely frustrating when the records don't get handled correctly and we don't get the fax as expected. Counts came in at 335! so a great number and nothing to be concerned about.

Next Plan: Blood Work again on Thursday.

April 26 - Blood Work

April 26 - Blood Work

Good Morning! It's Thursday! We got to the lab and there were several people ahead of us again. Since we weren't in a huge hurry today I told Levi we would be waiting today. He was ok with that as soon as P brought him out the tablet.

He played and played.

Apparently this is the most comfortable way to play trains.

Once it was our turn to get inside thing went pretty quickly. We talked with Levi about not grabbing his arm again this time and he listened for the most part so the blood draw went super quick and easy.

Then he was off to the treasure box. It took him a few minutes to decide what he wanted, but he settled and was happy.

Then we were off to school. It was a longer morning, but a good morning and everything went smoothly. Counts came in super early today which was nice. His counts were 336! Wow! An amazing jump since Monday. His counts are looking great.

Next plan: Blood work again on Monday! Have a great weekend everyone.

April 23 - Blood Work

April 23 - Blood Work

Oh what a morning it was. Comedy of errors all around. Levi woke up late which means we were running behind. Then at some point in the getting ready process Jay told Levi that if he got moving then he would find him donut money. We do donuts on Thursday usually, not just because it gets us thru the week, but also because I have early morning meetings on Monday at work and am always running late, but this had not been properly communicated to Jay. So I come down the stairs and am running around trying to finish everything, we need everything on Mondays, gotta fold the blanket and sheet, find the stuffy, pack the gymnastics bag, need a breakfast cup, and the regular morning stuff, so its chaotic. Levi looks at me and grins. I asked what was up and he said "Daddy gave me donut money! Look!" and shows me that sure enough there are 6 quarters in his jacket pocket. I asked him if he wanted me to hold them so we wouldn't lose them, but oh no, he needed them, because Daddy gave him the donut money.

So we finally get on the road and I swear get stuck behind every slow person on the way to the highway. Levi and I have a good chat on the way and then he watches his movie. We get to the lab and I am watching the clock thinking I might just squeak by and make it to the 9am meeting on time. We are walking into the hospital. Levi was in a super good mood and starts jumping over all the cracks and paint. No problem, he's being cute, and still holding my hand. We go to cross the road into the hospital and he jumps one more time and I don't know how this jump was any different then the 50 he had done in the parking garage, but suddenly all of his quarters come flying out of his pocket in 6 different directions. Levi loses it as that's his donut money. So there I am hunting down quarters while holding Levi's hand in the middle of the road, with people staring at me, and Levi melting down because his donut money is gone. I grab them all and get him to the sidewalk where we count them to make sure there are enough and this calms him down.

We get inside and for the first time in awhile Levi is all about stopping and staring at his fountain. Seriously kid, you haven't paid that thing attention in a month, and today you do. So we stop and look at it.

Then Levi goes running over to the lab and abruptly stops with this look on his face. I catch up to him and am not sure what has made us stop, until I look and the waiting room is FULL! Are you kidding me?!?! We haven't had a wait in months! The world is against me today. So I go up and sign him in, and for the first time ever I use the trick to jump him to the front of the line by writing "Levi - STAT" on the sign in sheet.

We sit down to wait for the person that is in there. Levi takes some cute pictures.

Then Levi plays on the tablet that P had brought out to him when she saw us coming in. He was "cutting hair" and having a blast!

It wasn't long before the person who was in their comes out and the person who was clearly next stands up. P calls "Levi" and the person whose turn it was glared at me as Levi goes running into the lab. P saw that and said "He's a child with a stat order, I have to take him." It didn't stop the glare, but I just kinda looked away and went in. Sorry lady, but sometimes there is a tiny "privilege" to being sick if you get to skip a line. I don't use it often, usually I would make him wait, but honestly I just don't have time today. And yes, you may be on a schedule too, and need to get to a work meeting too, but there is a slight difference between being late to work once in a great while because of medical stuff, and being late/waiting twice a week! Skipping the line is what we all needed today.

We get inside and Levi climbs up into the chair after getting his band-aid. He goes right back to his game and I figure today is going to be a super easy day.

But again the world was against me. P goes to put the needle in and Levi grabs his arm, above his elbow so not where she is putting in the needle, but above that which was enough to move his veins. At this point we are struggling with getting the blood. We finally get it going when Levi releases his arm so he can use his hand to keep coloring and that of course moves his vein again. So P gets the blood flowing, but it's at trickle rate and we are just trying to get enough to go in the tube. Finally we have enough in both tubes and get the band-aid on.

I try to quickly send Levi over to the treasure box so we can keep the show on the road, but today he wants a picture with his tablet drawing.

Then he is off to the treasure box. And we can't make up our mind. Everything looks awesome. Finally I told him he had to pick so he did. I honestly can't even remember what he settled on, but something and he was happy.

We stopped and got his sticker and we were out of there. I took a quick glance at the clock and did some mental math, figured if i grabbed his donut and carried him to the car I might make it to work just 5-10 minutes late for my meeting. At this point he is off and running to the donuts. We get there and of course there is a line. We must be the 8th person back. UGH! And they are all getting special coffee's so it takes forever. Finally we make it to the front of the line. He is so proud to have his donut money and to pay T (yup I finally learned her real name!) all by himself. He gives his hugs, grabs his donut, and we are out of there.

We got to school to drop him off at the time my meeting at work started. Then I had to clean his face and hands, bring him inside, and then drive the 14 minutes to work. I was 25 minutes late to my meeting. That is the life of the mom of a sick kid, nothing ever goes right. Everything takes longer and adds more stress then you would expect. Thankfully Levi was in a fairly happy mood.

Counts came in within 35 minutes today just like they always should. His counts were 203. A great increase from last week!

Next plan: Do blood work again on Thursday, and hopefully have it be a little less stressful! :)

April 19 - Blood Work

April 19 - Blood Work

Happy Thursday everyone! It's finally warm enough for spring coats!! And of course Levi's brand new spring coat is green. He actually has two of them, one from Grammie and Grampa and one from the Easter Bunny. That's when you know your kid has a favorite, when multiple people buy the same thing for him! He loves it which is all that matters!

We got to the lab and there was no line and no waiting, so that was nice. Levi headed right in to get his band-aid.

The blood draw went ok. Not great, but ok. Levi's little veins are getting tired. Thankfully P is great with him and understands his needs. After the draw he was off to pick out a sticker.

And then he was off to the treasure box. There was one bunny left and he took it. That makes our bunny family up to 3. This bunny likes to do back slides! He did them all around the fountain. People stopped and watched him, it was cute. Levi was being good and silly and it made people laugh.

Then we were off to school. In the car on the way to school Levi named his bunny. So even though this is kinda a crummy picture I introduce to you Hop Hoppy-Hop Pink-Bow-Tie. That's right, his bunny has a first, middle, and last name! And he came up with it all on his own.

Right after naming his bunny we then had a 5 minute conversation about Buzz Aldrin and the Apollo 11. He wanted to know what the other astronauts names were. He knows Buzz and Neil Armstrong. We talked about how we could look it up tonight after school. He said he might ask his teachers to look it up, and it wouldn't shock me at all if he did. This is the way his little brain works. We jump between being 12 and talking factual information about space and then being 3 and naming our bunny Hop Hoppy-Hop Pink-Bow-Tie. It's a fun world we live in.

Counts took forever to come in today. We eventually had to call medical records to get the numbers and actually got the phone call from his doctors prior to the fax coming in. It's crazy how some days they can get us stat results within 20 minutes, and other days it is 7 plus hours! Drives me batty. And it always seems like the days I am kinda on the edge of my seat waiting for counts, wanting to make sure that his counts went up and we don't need to head somewhere is when it takes forever. I just can't handle it. His count did go up back into the safe zone of over 100 so he could safely be at school (thankfully since he has been there all day and we got results at 3pm). His count is 120. Not an amazing number, but for 18 hours post infusion I'll take it! Thats a 39 point increase, which is a great post infusion initial increase.

That night we had all the bunnies at dinner. Thankfully there aren't any more in the treasure box because I couldn't shove another bunny in that seat! But they joined us for dinner and ate carrots while we had taco's. Levi was excited to have them all there. Here is our bunny family, from left to right, Hop, Green Bunny, and Purple Bunny or Mommy bunny depending on his mood.

Next plan will be to do blood work on Monday and hope his counts have gone up again.

April 18 - Infusion #40

April 18 - Infusion #40

We got over to the hospital and as always Levi requested that we park on Purple. I said sure and we headed to the top of the parking garage. Our spot was open by the sign and Levi was excited. Then we headed in to ride the elevator down. It really is a nice view from that high up and Levi enjoys watching it. He was holding on tight to Strawberry though as he didn't want to drop her down that far.

Once inside we headed to registration. All of the ladies at registration now Levi by now and are generally pretty excited to see him. They also all know that he likes to get a "key" at this point and automatically give him one! Which makes him happy. He was being good waiting today and just sitting on the bench. Somedays he is running around like a crazy man at registration. I think that some days his anxiety of going to the hospital is higher then other days, which always kinda shocks me since we do pretty much the same thing every time, I don't quite understand why some visits would be harder on him then others, but I guess thats the negative of anxiety, it rears it's ugly head at the worst times with no warning or reasoning.

Once we got registered we headed inside. Levi was lallygagging behind so I told him that I was gonna beat him to see Nurse A and get to pick the room. That got him moving and he ran down the hallway, almost running into one of the adults sitting and waiting in the adult waiting area. Nurse A gave  him the pick of any room he wanted and he picked Jungle (shocker?!? haha). Then he was off to do his work. He climbed right up on the scale with no concerns and stood super still. I think it was the fastest weight we have ever gotten on him.

Then he set in the chair with strawberry and did all of the things he needed too. We didn't even have to get a sticky oxygen sensor he kept the clip on one on! I was really proud of how fast he got all his things done and how much he didn't move!

Nurse A gave Levi a new bracelet as well. A bright red Allergy bracelet. Levi has reactions to tagaderm, we have never entered it into the computer as an allergy before, just always advised any new nurses not to use it and moved on. Apparently when we were inpatient in February they listed it in his chart as an allergy, so now he gets a red bracelet when we go as well to make sure that no one uses it. It's nice that I don't have to worry about it or pay as much attention to their job and can concentrate on Levi more, but it is weird to have another bracelet on. Levi didn't seem to mind too much, but did ask me several times what the words said (he is all into wanting to know what everything says. The kid is dying to be able to read on his own, but isn't quite there yet)

After that Nurse M (a new nurse who was covering for Nurse K who was on vacation!) was ready to access Levi's port. He was very unhappy about this today. He cried and cried almost screaming at one point. Not something he usually does. He kept looking at Nurse M and telling her not to hurt him. I think she was a little taken back by that and didn't quite now how to respond. The access went pretty well all in all. Once the needle was in and Levi realized that it didn't hurt because the cream had done it's job, he seemed to settle down. After all the tape and such was on, and the blood was drawn, Levi was off to the playroom to play.

The first thing he always does is play doctor. He likes to make sure the babies are well taken care of.

In the middle of Levi playing doctor, Dr. C came in to talk to us and to check him out. We talked for a few minutes about how over tired he had been in the last 4 days or so (except for this morning of course!) and how he has some bruises that are dark and in odd places. Then Dr. C asked Levi if she could look at him and he said "of course!" and came and climbed up on the bench. I love that all the doctors and nurses are so accommodating, they want the kid to feel so comfortable that they have no problem doing meds or a quick exam in the playroom so that the kid doesn't have to stop what they are doing for long. It just goes to show how much they are all about the kids. About half way thru her exam Levi looks at her and says "are you done yet?" I half giggled and was about to correct him for being a little rude and her just doing her job, when she kinda gives me a look and says "thats a very important question Levi! I have a couple more things to do, let's do them!" After she had checked him over she said that with what we had said and what she was seeing we were more then likely headed for an infusion but since we came in with our last counts higher then 100, she wanted to get blood work back prior to ordering the plasma.

I knew that we were in for a bit of a wait, and we settled in to the playroom to play. Levi wanted to do a parade, and since the playroom was empty we said sure. So around and around and around the table we went playing our instruments. Levi had the drums! He had a blast and was so excited that both Jay and I got so involved in his play.

After the parade we moved on to lots of other toys and books. Jay and I let him explore and pretty much do what he wants in the playroom and just go behind him on clean up duty.

Eventually he got bored of the playroom and decided to go for a drive. I can't believe how big he is in the cozy coupes now. It's crazy! He had a blast driving around!

He made it around to the snack area and decided that he needed to stop and fill his car up with snacks and drinks. It was really cute to watch him park, get out, close his door, pick out snacks and drinks, load up his trunk, and then get back in and drive off.

After a few minutes of driving we needed a snack break. Not really a huge surprise. Generally once he is accessed his anxiety goes way down and he gets hungry if he didn't eat much breakfast that morning. His first snack of the day was Orange bubbly soda and M&M mix (aka trail mix).

Him and strawberry enjoyed the snack. Also if you look closely you will see that Strawberry is wearing Levi's medical bracelet as a belt. He doesn't have to wear it at the hospital since he has on his hospital bracelet. Strawberry had been upset that she didn't have a bracelet and that Levi had 3 (his medical bracelet, his green hospital bracelet, and his red allergy bracelet) so Levi had asked if he could take it off and let her wear it. It was the sweetest thing, so of course we said sure!

After a little snack break Levi asked if he could watch a movie or play on his tablet. I said no, since you aren't hooked to anything yet you should be running around and playing, so somehow that turned into him conning me into a wagon ride. He is lucky he is so cute!

Making a three point turn with a wagon is hard man! Those things don't turn easily! But we made it!

We were talking to the nurses and both Jay and I realized that we had forgotten to give Levi his ranitidine that morning, so Jay hustled out to the car to get it. If we don't give it to him prior to an infusion they will give him another brand of it, and it doesn't seem to work as well, so we just figured we would give ours since we should have that morning prior to coming to the hospital anyways. Oops on our part, but our schedule was all out of whack and therefore our routine wasn't on.

Levi and I played puzzles in the playroom while Jay was gone. Levi did the body puzzle twice all on his own! He as really proud of himself.

Then he got excited because his favorite truck, the airgas truck, was making its delivery. I think he likes it because of the bright picture on the side and the fact that it delivers almost every time we are there. But he watched it for several minutes very excited that it had come.

 A little while later Nurse M told us that she had his bennadryl and tylenol ready to go. We were a little shocked as no one had told us counts yet, but figured if they were moving on with that then Dr. C had given the orders because blood work had come back. Usually at David's House in the morning Jay and I will each guess what we think his counts will be (Levi guesses too, but his number ranges anywhere from 4 to 4689 or higher, so not a real guess at this point). I guessed 79 and Jay guessed 50 and said he was hoping to be pleasantly surprised. Well his count came back at 81! It's not a first time that I have been almost dead on with the counts.

Since Nurse M had told us that she had his bennadryl and such ready we headed back to the room. Levi asked if he could paint and so we asked Nurse A for some paints and she said of course she would bring stuff into the room. We picked out a few movies and headed into his room expecting him to get hooked up soon. Nurse A came in a few minutes later with paint, paint brushes, and water for Levi and he set in to paint his caterpillar and dinosaurs. He had a blast.

Thirty minutes later Nurse M finally came in with his bennadryl and tylenol. I was quite annoyed at this point. We had just used 30 minutes of sitting activity when it wasn't necessary and instead he could have been in the playroom. Oh this is going to be a long day. Nurse M is very nice and we like her, but she doesn't seem to understand the needs of quickness for kids. She gave him his tylenol in a cup to drink instead of a syringe, boy did he love that. He loves purple tylenol and probably spent 5 minutes licking the cup after he drank it to make sure he got it all before I finally took it away.

After she got his bennadryl started we settled in with a movie. Today we watched Fly Me To The Moon, a movie none of us had ever seen. It was cute but odd. Levi seemed to really like it and it held his attention.

After the bennadryl and flush were done we got him unhooked for a quick potty break before hooking up his plasma. Nurse M seemed a little confused about that too, but once I explained a little she seemed better. Again I really don't think she is used to young kids. Once his plasma was hooked up Levi was acting a little tired, so he had some quiet cuddles with strawberry and watched his movie.

Daddy headed to the cafe for lunch. It's a Wednesday instead of our normal Tuesday so the specials were a little different so that was nice. Levi had a meatball sub and fruit. He was pretty happy about that. He ate while he watched his movie.

After he was done eating and his movie was over he asked for tablet time instead of another movie. I said sure, both are staring at screens, and at least some of the time on his tablet he is playing educational games, so have at it kid. Within the past few weeks he has started telling me when he is watching shows on his tablet versus playing games. I think it's because a few times we have said he can have tablet time but he has to play not watch TV. So now he looks at me with this little look and says "I'm watching shows Mommy!" Every time he did that today I said "ok buddy, cool! Whatcha watching?" and he looked a little confused. I think a few times he thought I was going to tell him that he had to play games. But there are no rules at infusions. If he wants to watch TV all day, go for it.

Finally the infusion was done! It seemed like it took forever today. I think it was mostly based on lots of waiting. But finally we were done. Deaccess went about as well as possible. Levi let her take it off and even took a lot of the sticker off himself, which he always likes to do. She also let him help push the saline and heparin into his port which he always likes to do. Then Levi went off to have his 5ish minutes of free play time. He told me he was taking his car to the beach. Not sure he found it in the hallway, but he sure had fun looking for it.

Then it was time to head out. Levi put his key in the box and we were free.

At this point Levi flipped a switch and suddenly realized he was tired, but in no way was he going to close his eyes and give in to being tired, so instead just became a ball of cranky goo. It was a LONG ride home! One we got home it was close to 5pm, so way to late to put him down for nap, but we did send him to 60 minutes of rest time which seemed to calm him at least. Bed was at 8pm and by then we all needed it!!!

We will do blood work tomorrow since it's Thursday. Hopefully this infusion will have brought him up some. We aren't looking for a huge turn around since it will only be about 18 hours post infusion, but as long as we see some increase and a number over 100 then we will be happy and can resume normal activities.