September 26 - MRI & Dr. V

September 26 - MRI & Dr. V

We got over to the hospital right on time for our 7:00 appointment. We got upstairs and checked into Pain Free. Levi was excited to go to their play alcove and was in great spirits. We had tried to explain to him what an MRI was without scaring him. We had said it was his sleepy test and explained that we would be there when he went to sleep and we would be there when he woke up. He didn't seem phased by it, but I really don't think he had a clue.

We got him changed into the hospital johnny and got checked in. The hardest part of the paperwork that asked the question "Is patient wearing any jewlery or nail polish?" umm... when is the last time he asked for his nails to be painted. Yea I think he probably is it hasn't been that long!

Levi played while we finished the paperwork.

Then we headed into the room with the bed in it. Levi got to play with the fishy lights. They have a cool board where the kids can change the colors in the tube. He had a great time with that.

Nurse T had come up from downstairs to access Levi! Yay! That took a lot of stress off of us as we didn't have to explain the odd procedure and needles that Levi requires and Levi was totally cool with it all because it was Nurse T. She got him accessed while he was able to play with the buttons with his toes! He thought that was the coolest thing ever.

Dr. V had ordered some additional testing to be done today so Nurse T took several tubes of blood and Levi had to pee in a cup!! Which is like the highlight of everything for him. If you can pee in a cup you are cool in his 3 year old brain!

After he peed it was time to go to sleep. Jay and I were both in the room with him. I held him and gave him a hug and told him it would be ok. The meds went in thru his port. It only took about 30 seconds and he was out cold. Always the strangest thing to see! We were given our pager and badges and told it would be about 90 minutes before we would be called back to pain free. Jay and I headed down to the cafe for some breakfast and relaxing and talking.

The 90 minutes went much faster this time then the last time he had an MRI, and way faster then the 2 times hes been in surgery. I think both Jay and I were much more relaxed this time, knowing more what to expect. At about 93 minutes our pager went off. We headed back upstairs and right into pain free. Levi was just starting to come too and man was he ANGRY! He was so confused and disoriented. It was a good 20-30 minutes of "I want this" "no I don't!!" and a lot of "Mommy I want a hug" followed just seconds later by "GET OFF OF ME!" He asked for his tablet to play a game but his little body just wasn't awake enough yet and that frustrated him. He asked for food and a drink. We gave him a popsicle but he didn't really want it. Then a chocolate milk. Then another popsicle (the first one had mostly melted and been thrown away!) It was roll over, up, down, hug, get off of me, tablet, drink, stuff, etc. It was just a nightmare. We changed him back into his PJs thinking that maybe he would be excited about that, and he was for a second he fluffed his head onto his pants a few times but then just got crazy and antsy and out of control again. Finally we decided that maybe a change of scenery would be best so we headed out of pain free and down to the clinic. Maybe getting him where he is used to would make him happier. They asked if we wanted a wheel chair (pain free and clinic are at the complete opposite ends of the hospital from each other, plus on different floors). I thought that might be fun for him so we set him in it and he just lost it! So that was a no go. So he got in Jays arms and we headed out!

He saw that Jay had a banana from breakfast and that quickly became his banana! He was pretty content for a few minutes sitting in daddy's arms with his blanket and banana.

We stopped and saw the stick moose on the walk to clinic. He is obsessed with this thing!!

About 2/3 of the way to clinic Levi tried to leap out of Jay's arms and into mine. So we stopped and switched people. We made it the rest of the way to clinic without incident. We got in to clinic and said hi to everyone. They needed to do Levi's vitals and he set ok for that. The jungle room was busy so we got put in room 11 out back again. Levi was pretty excited. We turned on the TV and Paw Patrol was on so that made him even more excited. He also wanted to get a snack so we got him some crackers and he needed to have the table in the right place so we got that, and then he just kinda chilled.

Dr. V came in to tell us that the preliminary MRI results were in and everything looked good. There were no changes since 18 months. The odd abnormalities that were there at 18 months are still there, but there is not any more of them and they haven't changed or grown, so whatever they are they are staying the same!! So that's good news. 

Then a resident came in to talk to us about Levi for a few minutes. I usually don't mind talking to residents at all, and I know that Levi's case is rare and different so they all want to see him, but today I just wasn't in the mood. Levi still wasn't himself and it had been a stressful morning and I just wanted to cuddle up with my little guy and talk to the actual doctor. I think the resident could somewhat tell that, which I feel bad about, I tried to be as polite as possible and answer his questions, but he didn't stay nearly as long as most and before I knew it Dr. V was back in to see us. 

Levi's labs came back at 175 today so a huge increase from Dover. Of course we are at a different lab and blood work from his port instead of his arm which we tend to always see some differences. Dr. V was very happy to see that his labs are staying in this range. He has a hunch that his counts will level out around 150 and stay there. We shall see. Dr. V said that he wants to see us back every 2 months no matter if he needs an infusion or not. That way they can access his port and make sure that it is staying good for when we do need to use it, and Dr. V can examine him and make sure that we aren't missing anything. So for now we will be back in two months! Before if his counts drop below 100. 

Levi was starting to feel better and wanted to play in the playroom before we got in the car. I said for sure and off we went for him to play! 

After a few minutes it was time to head out. Levi had done the puzzle, played with books, sang a song, and played with the band, so it was time. On the way out Levi wanted his picture with the spinny art so we went upstairs for that.

Then we had to stop and see the moose again! He loves that guy!!

Then we were on our way home! It was very strange to be in Lebanon and not do an infusion. Levi seemed a little confused too about why he didn't get a movie at the hospital or more time to play! But it will be nice to get home. 

Next plans: call if numbers drop and we will be up for immediate infusion, or else we will be back in 2 months. Now that Levi's counts are below 200 we are doing blood work twice a week. Eventually this may change if we see that he really does level out, but for now it is a comfort for me to have his blood work done more often! And he doesn't seem to mind since he gets to pick from the treasure box and gets a donut way more often then he should!

September 25-26 - David's House

September 25-26 - David's House

What a busy day it's been. Levi and I drove to school and work from Auntie Martha's house this morning as Jay didn't get home from DC until crazy late. Rushed out of work to get home to unpack and repack quickly and get on the road by 5:00 (our goal time to leave for David's House). On our drive from preschool to home I always ask Levi who he wants to take with him to cuddle with. Usually he picks crayon, spidey bear, or whoever his newest guy is. Today he said "owl is cute!" so I said Ok, owl is good. Then asked who else he wanted to take, thinking he might pick someone who is a little bigger for cuddles. He hemmed and hawed for a minute (the cutest thing ever, and if you haven't actually heard him do it you should try to the next time you see him, its adorable!) and then said "Do I have a duck??" I said "yes" he asked "is my duck yellow?" I said "yes! do you want to bring your duck?" he said "where is my duck?" I said "either downstairs or in your toy box." he said "Ok, we should bring duck! QUACK!!! shhhh QUACK!!! shhhh QUAAACCCCKKKK!" and then giggled his pants off! In case you are confused there is a book called "Thumper and the Noisy Ducky" it's a favorite of Levi's and we read it fairly often because he thinks it is hilarious.

The drive up was smooth and easy. Stopped in Chichester for Slushies, Levi watched movies on the way up and Jay and I caught up on our weekends apart. Levi was very talkative for much of the drive as well, he always wants to be part of the adult conversations. We also heard a lot of QUACK shhh QUACK shhh from the back seat!

We got to David's House about 7:00 and got checked into the insect room. We have been in there before. It's a nice room with Levi getting his own cot right by the windows. During check in Levi was wondering around the room looking at the donated stuffed animals and saw that there was a Cranberry. We talked about that for a minute. Then he saw a Green Rainbow Brite Sprite stuffed animal. Of course he had no clue who it was, but Jay and I both did, and thought it was cool and he thought it was super cool cause it was all green! He asked Kim if he could have it (the answer is always yes, thats what the stuffed animals are there for is for kids to take!) and he was super excited. Him and Sprite ran up the stairs to Insect!

Jay had brought back presents from DC so Levi was very excited to open that. It was a set of all 4 Rescue Bots!! It made Levi's day!!

We headed downstairs for dinner which had been made by the Dartmouth Tennis team. It was pretty yummy! It was hard to get Levi to pay attention to dinner, all he wanted to do was play with Chase, Heatwave, Blades, and Bolder.

After he had eaten some we let him play. Jay and him had to figure out how to get Chase to transform and stand up! Took a minute, but they got it!!

After that the boys headed to the playroom to play while I took a few minutes to decompress from the drive and relax, ended up almost falling asleep upstairs. The boys played downstairs with toys and the slide, but don't worry the rescue bots were never far away!

If the boys hadn't come in when they did I would have been asleep. They come up to get bedtime meds! Wow, that evening went by quick. Once he had taken his bedtime meds we headed downstairs for a snack and drink. With Levi's MRI tomorrow he can't have anything to eat or drink after midnight, so we were trying to get him to eat and drink as much as he could now.

Then he picked out a few stories and we headed upstairs. He was very excited to see that someone had donated a whole stack of Elephant and Piggie books! So he picked two of those. We headed up to get him into comfy PJ's (he will just wear them over to the MRI tomorrow) and a pull up. Our rule is that if he is sleeping in someone else's bed he has to wear a pull up, not that he has had a night time accident in over 2 months, but still.. He was VERY unhappy about putting a pull up on! It took quite the struggle. I figure if we continue on this path of no night time accidents it wont be too long before pull ups are a complete thing of the past, which will be AMAZING!

We read our stories and tucked in Sprite, Owl, Duck, Monkey, Piglet, and Levi! It was only a matter of minutes before Levi was out cold. The weekend and drives had worn him out!!

Jay and I headed downstairs to talk for a few minutes and have some dessert and relax. Then we headed up to bed around 10:00 as it will be an early morning!

The alarm went off at 6:15!! Early morning!! We got Levi up and pottied, put on his button meds, and then we were off to the hospital. The house was very quiet when we headed out. We didn't get to see Jaye, but did sneak the envelope and key into her office.

Thanks again David's House. We will be back! We don't know when at this point, but we will be back!

September 25 - Blood Work

September 25 - Blood Work

We got to the lab a little later then normal even though we were up at 6am. It's a long drive down from my sisters! :) And it's our first time coming on a Monday in a long time, so it was a busy morning! There were three people ahead of us, so Levi settled down in a chair and played Toca Kitchen on my phone. He had a blast and was cracking up which were getting all of the other people around us laughing too. The atmosphere in the waiting room definitely got a little happier and lighter with all of his laughter.

Once it was time to head inside, he went right to get his band-aid. He was so excited to find a hulk band-aid! He climbed up in his chair and was lounging in the chair while P stuck his arm, he was leaning against the arm rest and had his feet up on the wall. It was crazy! It just shows how common practice this is for him!

Once the needle was out he was off to the treasure box and right on top was a green mermaid and he was sooo excited!!

Then we headed out to the lobby and his fountain was still off (it had been off with guys working on it when we got there). He was very sad that his fountain was off!

Then we were off to school!

Counts came in before I got to work!! I was shocked! I am really starting to feel that we may have turned a corner with the counts coming in.

Count today was 158! Only a 2 point drop since Thursday! That's great! We will see if we are going to level out here or drop more! Only time will tell.

Next Plans: We are headed to David's House tonight for Levi's MRI tomorrow and an appointment with Dr. V. We will see what blood work is there.

September 21 - Blood Work

September 21 - Blood Work

We were running a little late this morning because Levi poked his head in our room this morning and said "I'm peaking mommy..." and who can stop that, so in he comes and climbs in bed for cuddles, tickles, and giggles!! Once we got to the hospital and pulled into the parking garage Levi suddenly got very upset. I wasn't sure what was up until he looks at me and says "Mommy we are running late. P wont be here! She will have gone home!" and he almost started crying. It was so cute and sad. I gave him a hug and told him that we weren't running that late and that P would definitely still be there. He perked up then some.

Once we got inside he wanted to go see his fountain. And was very excited about it. He likes looking up high to see where the water is coming down from!

 The blood draw went great! Levi even helped take the green tube off and push the purple tube on. He was pretty excited about that! He is getting so big and getting so helpful! After the draw was done he headed to the treasure box and picked out a paddle ball game with a light up ball. He thinks its the coolest thing ever!

It was donut day and Levi was very happy to see that "The Donut Lady" was back today! He asked nicely and was happy that there were sprinkle donuts. She gave him three pennies to throw in the fountain and made his day! As soon as we got to the car Levi was excited to have his donut!

 He ate his whole donut!!!! Now that he eats the whole thing (and not just the jimmies!) he needs to work on getting all of the frosting in his mouth and not on his face. This is what it looked like once we got to school. He realized that he had a lot of chocolate on his face about five minutes from school so he started picking up his leg and rubbing his face on his knee and then licking his knee. It was cute! And I am very glad that last night was bath night!

Counts came in 25 minutes post us leaving the lab!! Maybe all that time I spent at the hospital last week dealing with results was worth it. We will see how the next few weeks go.

Counts today were 160. Not a bad number. This is where the stress for me comes in as we are now low enough that in the past we would have been heading up for an infusion. We will see what the future brings. Not sure if we will continue to fall or if we will level out, but the next few weeks will let us know.

Next plans: Now that we are under 200 we will be doing blood work twice a week. So next blood work is Monday 9/25.

September 14 - Blood Work

September 14 - Blood Work

Well today was quite the day!! We got to the lab and Levi immediately wanted to go and see his fountain. He was admiring how tall it was!

We got inside and Levi picked his band-aid. He found the paw patrol box and we were able to find one with Rocky on it! He was super excited!

Then the day just goes down hill. P did the stick and it didn't go great. It's a huge blessing that he is so good because she had to move the needle a lot to find the vein and the worst he ever said was "ouch" and looked at her with his pouty lip! Then once it was done he headed to the treasure box. For several days he had been talking about wanting a stuff from the treasure box. For the last month or so there has been a dinosaur and a caterpillar stuffy in their that no one had taken for at least a month, and of course when he goes to look today they were both gone! He was so upset. He ended up taking a bottle of bubbles and a small rubber ducky! He gave his hugs to P and we were on our way to school.

School drop off went fairly well. We got there at 8:23 so he made it in time for breakfast (they hold it for him on Thursdays so he will get to eat as long as we are there before 9:30, but I don't like to have to use that accommodation if I don't have too as I know it make him either miss things or the whole class to be slightly behind for the morning!)

I headed to work to await the results. By lunch time when they hadn't come in yet I was annoyed. By 2:00 when they hadn't come in and there was no message on the answering machine I was angry. I had to leave work to drop my stuff off for the consignment sale so I decided I would just make a pit stop at the hospital. First I checked in with P to make sure that the orders had been put in right (one time ever they hadn't, and I didn't want to get her in trouble!). They were put in right so I asked her who I should escalate the issue too. She gave me a name and number of the lab supervisor. I headed straight to the front desk where they called the supervisor, who of course didn't answer. I headed out of the hospital, called Jay and vented for 5 minutes or so and then headed back inside. I asked them to call her again and still got no answer. I decided that I had had enough and that today was the day I was going to escalate this. So I had them call the VP of Patient Privacy, a lady we have worked with before about the faxing of lab results. She also wasn't in, which isn't a huge surprise, but at least I got her number. At that point I requested a meeting with a patient advocate.

It was only a few minutes before the advocate, Derek, came out to talk to me. We met in an office and I explained the issue. He questioned my true need for a stat lab for a minute and why we got the results directly as well as our doctor, but once I explained myself multiple times he seemed to get it. He contacted the lab director, who also wasn't in. At this point he seemed to be hitting a wall so he requested that we walk back to his actual office (he talked about it being a long walk, I wanted to say "umm... this is WD you should see the walks we take at DHMC" but I didn't). We got to his office in about 30 seconds! I waited while he made some additional phone calls and talked to some additional people. He found Levi's lab results, but supposedly the people who had them, Medical records, did not have access to release them to the fax number even though the fax number was on the order. Very frustrating. So I had to travel to the Broadway office in order to get the results for today. Derek did say that he is going to continue to track down the root cause of the overall issue, but that at least I would have today's results.

I was a little worried that I would get over to Patient Records and they wouldn't actually have them as before I have been told that Patient Records does not get records until 5-7 days post lab, but I was pleasantly surprised that I had not been given the run around, and they did indeed have the results. And not only did they have them, the lady who Derek had talked to was waiting for me to personally hand them to me, all I had to do was sign for them! While I was there I also picked up the records from the August 15th blood work that we had never received so that I can update our records with those numbers as well.

It was a long afternoon! I walked into WD at 2:05 to start the process of tracking down the records, and walked out of Patient Records with the results at 3:15! But at least I had them.

Levi's counts are 201! A great number with the fact that we are now technically "over due" for an infusion based on our past 3 week schedule, he would have gotten one on 9/12. It is a 35 point drop since last week which makes it a fairly steady flow downward, judging on past data once we start dropping we don't stop, but we will see if we level out somewhere or not!

Next Steps: We will probably start doing blood work twice a week now, which means we will do blood work on both Monday and Thursday (clinics/infusion are Tuesday and Friday) but we will see how his weekend goes if we decide to start on Monday or hold off until Thursday.

On another note I truly believe that everything happens for a reason. You don't always know that reason, you might never know the reason, but every decision is a reason in someone's life. And the fact that we went to wait and see 3 weeks ago, and we were not at DHMC on Tuesday 9/12 during the Active Shooter incident we were very grateful. We are also very grateful that no one we know was injured and that the incident was handled well by the police and security team! I am not sure how I would have handled that with Levi and what I would have explained to him if we had evacuated the building, so I am just grateful that it wasn't something we had to handle. Our thoughts and prayers are with the family of the deceased and the shooter who is in custody.