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.

September 7 - Blood Work

September 7 - Blood Work

Today's blood work went as smooth as blood work can. Levi picked out a shopkins band-aid. He really wanted the shopkins icecream, but we weren't lucky enough to get it this time. He got popcorn, the sneaker, and the lip stick. I thought he might be upset but he just rolled with it. The draw itself went great and we were on our way to the treasure box before we knew it. He found more silly putty in the treasure box and was so excited.

After Levi gave his hug to P, she gave him some change from her purse to put in the fountain. He had a blast throwing them in. He told me he made lots of wishes but couldn't tell me what they were.

Then we were off to get a donut! He was so excited to get a donut, but was very upset that "the donut lady" wasn't there. He was worried that she was sick or hurt, and that the new lady didn't know how to sell donuts. Once he asked nicely for his donut and said please and the new lady sold him his donut he was happy again! He ate the ENTIRE thing! That may be a first!!

We got to school and it was breakfast time. They handed the kids whole plums! I was shocked!!

I was also very shocked when I got to work and counts had already come in! It was just 30 minutes for the fax to come in! Color me shocked!! Counts came in at 236! A great number!

Next plan: Blood work again next Thursday! We would normally be heading to an infusion on Tuesday so we are now starting the wait and see!

August 31 - Blood Work

August 31 - Blood Work

Blood Work this morning was no big deal as usual! There was a short wait. But Levi entertained himself playing with the chairs and then playing fireworks on my phone.

It wasn't long before P called him inside and he headed to pick out his band-aid. It took him a few minutes to decide today but he finally did settle in on a decision so that was nice!

He picked the Looney Tunes and thought they were cute, but didn't know who they were. I had to explain to him who bugs bunny was! Oh the education on cool characters this kid needs!!! Guess it's time to pull out some old VHS for him!

The draw went great and we were off to school before we knew it. No donut today but he did have a pop tart which he was pretty excited about. And our ever present Jetts was with us as always!

Counts were slow to come in today, but they did arrive around 12:30 so thats not horrible! Not great, but not horrible! His count is 250!! So still a great number!!

Next Plan: Blood Work again on Thursday!

August 30 - Endocrinology

August 30 - Endocrinology

I don't know what our problem was this morning but I could not get us out of the house on time! Then the stop at Dunkin Donuts and the stop to leave Jay's car near exit 12 took longer then expected and we were running late. We arrived in the parking lot 1 minute before our appointment and we still needed to register. I felt really bad. We are one of the first appointments of the day for Dr. C and I didn't want us to make his whole schedule be behind.

We got registered as quickly as we could and headed upstairs. I filled out the paperwork as fast as possible and the nurse called us out back. Levi wasn't too excited about getting the arm huggy, partially because it was someone else and she wasn't making it the same game as they do in Lebanon, and partially because he just wasn't feeling it this morning.

But he did cooperate enough for us to get the necessary numbers. It wasn't long before Dr. C came in. We talked for a few minutes about things and then he did an exam on Levi. Dr. C said everything looked great! We are do for thyroid labs again in October so he will put the orders in and we will do them some time when he is already getting stuck. Other then that, he said everything seemed good.

We checked out and set our next appointment for 6 months from now! And then we were free!

It's so nice that his thyroid is under control now and not really causing any additional issues. It was so scary when he was little, and not it's just such a part of his life and routine that I don't even think much about it. He takes his meds all by himself, and even says "when I get big I can flavor them by myself!" so there is no concern there. And with only having to wait 30 minutes before eating thats really not hard. That time is pretty much eaten up by getting dressed and making whatever he wants, rarely do we have to actually make him wait. It's nice to know that although his thyroid could be a major concern and could have caused lots of long term issues, that it hasn't! That we got it under control early on, and now it's just a part of who he is!!

See you again in 6 months Dr. C!

August 24 - Blood Work

August 24 - Blood Work

Blood work this morning went as smooth as could be. Levi was in a great mood. He went right in to pick out his band-aid. Climbed right up into the chair to open his band-aid, held out his little arm and got his blood taken without any concern!

After the blood was taken he headed to the treasure box and selected 2 bottles of bubbles! He was very excited about them! And we were off to school!

The hours came and went and still we had no counts. By 3:00 we were getting very annoyed. We had just gone to wait and see and we aren't getting the fax with counts?! We called Dr. V's office and they didn't have the fax either. Seriously?! It's a stat lab taken at 8:00 in the morning. We called the lab and they gave us the run around. Putting us on hold, hanging up on us, putting us to medical records (who doesn't even get results for 5-7 days after a test is taken) just all very frustrating. By 5:00 we had to give up on getting results as the lab had closed for the day. When we still didn't have results the next day we were ticked! I sent some nasty e-mails to the hospital that go no response. Since his counts had been high and he just had an infusion I attempted to not stress too much.

On Monday morning Jay went to work and lo and behold there were the results on the fax machine. They had come in on Saturday morning! Really?!? Saturday?!?! From a stat lab on Thursday?! That's ridiculous! Anyways as expected his counts were great at 268.

Next plan: Blood Work again on the 31st!

August 22 - Infusion #32

August 22 - Infusion #32

After our eventful morning we arrived at the hospital a little later then desired, because of this we took the first available parking spot. Levi was a little upset that we didn't go all the way up to purple, but he got over it fairly quickly.

We got checked in and went inside. We turned the corner and the jungle rooms door was closed. Uh Oh! This might not be a great day after all. We talked to Nurse A and she said that we could hang out in the playroom for a little while until the Jungle room emptied or we could go into a room out back. I asked Levi if he wanted to wait or if he wanted to go into a new room out back. He picked the new room out back! I was shocked. So over we headed.

Levi got settled into the room pretty quickly and was very excited that the tv had cable and as soon as we turned it on Puppies came on!! (AKA Paw Patrol!). Dr. V came in with a resident after a few minutes. The resident had been upstairs in pediatrics last month, so we had actually met her during our 24 hours of inpatient. Dr. V wanted us to seriously consider going to a wait and see method instead of scheduled due to Levi's last reaction. Of course since we are here he will be receiving plasma today, but he wants to discuss the future. Levi was oblivious to all the adult talk and just wanted to eat his snacks!

Dr. V left and the resident talked to us for awhile about how Levi has been doing and the future state of things. We talked about his recent bout of belly issues over the past week. She gave us several suggestions. Nurse T came in to get things started. We have added to Levi's pre-medications as he now gets a dose of tylenol and a dose of bennadryl.

After the Resident and Nurse left we discussed what we wanted to do. After lots of discussion about things, we decided that it probably is best to go to a wait and see method. The last reaction was very scary! The less infusions he has the better it will be for his little body, and it wont add stress to his life to have less infusions, only stress to ours. We did discuss that we will probably go back to a twice weekly blood draw as his counts go down but since he loves P so much blood draws are fairly easy at this point!

When Dr. V came back in we discussed with him our decision. He was in complete agreement with everything and very happy that we have decided to go this course of action. To be honest, I think he would have been happy if we had done it 6 months ago. Since there is no way to know what his counts will do (level out, drop, rise, etc) on there own we will be keeping a close eye. If his counts drop below 100 we will be up for an infusion within a day. If we find that we are coming up unplanned every 4 weeks or so, then we will just go back to every 3 weeks scheduled. Also Dr. V will be scheduling an MRI in about a month to get another baseline. Then we can compare that one to the one he had at 18 months to make sure that nothing has happened. And we will do one every year going forward while we are on wait and see to make sure that we are not missing anything.

As per usual Levi was very unaware of this conversation and was just happy to watch his movie and eat his snacks! He has no idea the giant switch in life we have just made and the large amount of stress and worry it adds to his mommy! But if I can take some stress off of his body I will do it!

Everything was on a VERY slow schedule today. As they still have no idea what caused the reaction last time they are taking every additional precaution they can. We waited a full 60 minutes between the end of Bennadryl and the start of plasma today with IV saline the whole time. We have never done that. Levi was doing great!

Counts came back at 266! So a great number. At least I know that we are headed into the wait and see period as high as possible and on a good note.

It was time for Jay to head to get lunch so he headed down to the cafeteria. He hadn't been gone long when a volunteer stopped in and asked if he wanted anything for lunch from the cart. She gave him a gingerale and yogurt and he was excited. I told him this was a perk of going in the big kids room and he seemed happy. Jay came back with lunch and he ate some, not a ton, but some.

A little while later the volunteer came back again with a cart full of dessert this time! She had chocolate ice cream and oreos (plus some other choices)! She gave all of us some and Levi was so excited! He ate almost all his ice cream!

It wasn't much later that Levi's infusion ended. Things had gone seemingly great! Of course they had last time as well. In order to be the most cautious we could we were staying in the hosptial for 90 minutes post infusion. Levi would remain accessed during that time, but not hooked to any line. We were welcome to go anywhere on DHMC property, but not leave. Levi was very excited to go play, and we actually ended up spending the entire 90 minutes in the playroom.

He made a bracelet.

Played some music! 

Took a "Nap" with Daddy

Found popcorn in the snack cupboard during his wagon ride. 

Took the baby on a stroller race around the clinic. 

Played with cars. 

Played with the train. 

Built the entire girl body puzzle by himself!

And played with dinosaurs!

Before we knew it it was 3:00. Levi headed back to his room to get his vitals taken. He was acting normal and all his vital signs came back normal so they decided that we could go home! YAY! We deaccessed Levi's pot and we were out the door. Of course with a stop to pop his popcorn at the microwave and turn his key in to the box.

We got in the car and Levi was so excited to be heading home and even more excited to have popcorn!

Sharing a piece!

We had to stop at the gas station and in the slim chance that Levi might fall asleep we stopped at the Irving right below the hospital. I went in to get drinks for everyone and saw that they had Donatello, Levi's favorite TMNT. Since he had been so good all day I decided to treat him and got him! Levi was so excited!!

He even shared his popcorn with Donatello!

I am so glad that today went well! I don't even care that we wont get home until 5:00 or later! I am just happy knowing that we will have a quiet and stressfree drive home. Levi still talks about "When I got sick in the car we rushed rushed rushed right back to the hospital!" I probably hear that on a daily basis, so knowing that this time we are just headed home is a huge relief.

We are now in wait and see mode. I don't think that will really kick in until the 11th when we should be heading to David's House. Until then life will just be status quo. After then, Life will be a little more stressful, a little more worrisome, a little less carefree. We will be back to having a bag packed all the time and ready to take off at a moments notice!