February 26 - Infusion #5

February 26 - Infusion #5

The morning started out a little sleepy and a little early by Levi, but the day went quite well. It was the first time that we were putting the numbing cream on his port, so there was a little learning curve there on how much to use and how to get the plastic band aid sticky thing to work. But we got it. I definitely think we will put a little more on next time, but overall it worked fine.

We got over to the hospital and checked in. They got us right out back. And we settled into the jungle room again. They did height and weight again, today he was 30.5 pounds and 34.25 inches. The science of a growing and shrinking toddler! HEHE :) Then we went back to our room to access the port. That went pretty well today. Not as well as last time. More numbing cream will be good. And it didn't want to give blood very well. But we figured out the trick with him turning his head and laying down with his arm up. They said tricks like that are good to know as it all depends on how the line is sitting in the vein.

The nurse prepping everything. 

Levi chilling out

Once the port was accessed they sent blood down for another CBC and we waited for the plasma to come up from the blood bank. Levi played in the playroom and we tried to get him to run around as much as possible. But kids don't seem to understand that they wont be able to run around soon, so he wanted to sit and color and ride in the wagon. He did play and ride in the car, so at least he got out some energy.

Riding around the halls. 

Coloring with markers. :) 

"VROOM VROOM" Is what he was yelling down the hallway

His platelet count came back at 153 today so I am glad we stayed over and are running plasma today. If it dropped 27 points over night who knows what it would have been by Monday's blood draw. We met with Dr. V and discussed the future plan as well as today's plan.

Then it was time to start the infusion. Jay went down to the cafe to get breakfast and Levi and I headed to the jungle room. They did another vital check and all the paperwork and then hooked the plasma up to his line and he screamed!! They immediately stopped the plasma and we lifted his shirt. The little bugger had partially pulled his needle out. So it was out of the port, but not out of his skin. This sent the first few drops of plasma into his chest tissue. It wasn't enough to be dangerous, but I am sure it hurt a bunch. We got the needle back into the port and taped it up even better this time. We started the infusion again and all was good. We taped and safety pinned the line to his shirt like usual so if he pulls on it it should pull on his shirt long before it would pull on the port again.

Infusion Started.

Daddy came back with breakfast and we ate as a family before he headed back to David's House to check us out.

Breakfast while watching Curious George. 

Levi and I watched Curious George and Doc McStuffins and laid on his new nap mat.

Laying down.

Daddy came back and Levi was getting very restless so we decided that we would attempt a trip to the play room with his IV pole. We figured with two adults we should be able to handle it. We would have one adult with Levi and one adult on the pole. Levi did great getting down the hall way. He held onto the pole and pulled it behind him. Hmm... Maybe this will go better then we thought.

First trip out with the pole. 

The walk went great. And when we got to the playroom it went great for a few minutes. He played with the white board markers and colored, and then stood and played with bubbles (ie. ate them).

Yummy bubbles. 

But then he got bored of being in one place so he wanted to run run run. This caused some issues. Another little girl also came into the play room and that caused a few issues because Levi didn't understand where his line was versus where he was versus where the little girl was. But we made it!

Then we got Levi to settle down with a few books and Mommy and Daddy took turns reading. We even kept up with this weeks lesson/book/theme at daycare by reading "If you give a Mouse a Cookie" and "If you give a Cat a Cupcake".

Reading with Mommy. 

Reading with Daddy. 

The pump was telling us we only had a few minutes left so we got Levi to head back to the Jungle room and we put on Elmo. The walk back went well again. He held on to the pole and pulled it behind him.

Pulling his pole.

The pump went off and there was still a lot in the line. Levi gets 200mL and the bag said that it had 202mL in it so we figured they would switch over to saline to push the line clear. The nurse came in and shut everything off. We talked to her about this and learned that the amount on the bag is often very inaccurate. That the volume is computed based off of weight, and that the weight differs greatly from scale to scale at a donation center as well as a persons blood cells. And that they nurses have to fully rely on the pump at the IV to determine how much to give him. This was definitely news to us as we figured it would be a better science then that when filling the bags.

When it was done we removed the plasma and then flushed his port. They then need to get a blood return before they can put the heparin in to the port. His port did not want to give any blood. We tried laying down and sitting up, Finally it came. We put the heparin in, a tiny band aid on and we were out the door.

From door to door we were there for 5 hours. When we got in the car Levi asked for his apple. He took a few bites before falling asleep before we were more then 10 minutes away from the hospital.

Infusions are exhausting!

Future Plan: With 2 cycles under our belts now, Dr. V feels pretty confident that we are on a 3 week schedule. Going forward we will be scheduling infusions every 3 weeks on Tuesdays and we are dropping blood draws from twice per week to once per week for the first 2 weeks and then twice per week for the third week before an infusion. This time we are going to go 3.5 weeks to get us from a Friday to a Tuesday. And if we feel anything is off between then we can get the extra blood work if we want and can always call Dr. V with our concerns.

February 25-26 - David's House - Our First Stay

Our First Stay At David's House

We had been told about David's House sometime in the last month and had done a little research about it, so we thought we would check it out and see if they had a room for the night. If they didn't then we would go find a hotel room.

We got over there after a few minutes of getting a little turned around and went up to the door. It is literally spitting distance from the parking garage, but you have to take the right little cut off road to get there. We got buzzed in and talked to the manager. They did indeed have a room that we could stay in for the night. :) We filled out all the paper work and got a tour of the house. Then we settled down in the dinosaur room. After much stress we finally got Levi down for a nap. By the time we got to the room he was over exhausted and fighting the nap. Plus it was a different place and different bed. I settled down for a little rest myself and Jay took off to explore the house (he doesn't sit around well).

The dinosaur room. 

About 90 minutes later he told me there were freshly baked cookies in the kitchen, so I thought I would sneak out of the room and head down. But no such luck. As soon as I stood up Levi was wide awake too. So we headed downstairs for cookies. And then we headed down to play. The rest of the evening was filled with play time, house wandering, and meeting new friends.

Indoor slide

Ride on Airplane. 

At 6:00 dinner was ready. Tonight dinner was being prepared by the Aquinas house at Dartmouth College. The food was delicious and they made a ton of it!! Thank you!

The rest of the evening was spent wandering and playing. We did discover that the house has very few toddler books. Levi loves to read and be read to, but all of the books were really older then him. We would like to start a collection of Toddler books (board books with a story not necessarily the infant books with just a few words in them) to take up with us the next time that we go. So if you would like to donate a new toddler board book to the David's house please feel free to message us here, or drop it off at Michelle at work, Jay at work, or at our house. Thank you!

Not long before bed time the volunteer for the night let us into the quilt room and Levi got to pick a handmade quilt to bring home with him. The room was huge and they were stacked floor to ceiling. It took a few minutes but Levi settled on a quilt that was dinosaurs, M&M's, trains, frogs, and bright colors. It is beautiful!! The quilt was made by a member of the Ladies of the Lakes Quilters' Guild, Thank you for making something so beautiful for Levi.

Levi in our room. The folded quilt on the bed behind him is his to take with him.

Added Photo: Levi playing "Levi Burrito" with his quilt at home on 3/2. 

Levi had a quick bath to try to settle him down for the night and then we went downstairs for our last drink of the evening. The house insists that all food and drink be kept in the kitchen only. And then up for bed. Levi went down much easier for bed time then nap time. Jay and I headed back downstairs for a little adult time. We talked to some of the other parents staying at the house and just relaxed for a few minutes before bed.

In the morning we got up early to head back to the hospital. It was very nice to be able to get up at 6:45 for a 7:30 appointment. We headed out quietly so as not to wake any other families. Levi insisted that he lug Piglet and Monkey, they could not go in the diaper bag.

Half awake heading to the hospital.

We are very thankful for David's House. It made our night much nicer. Instead of staying in a hotel room with nothing to do, we had a huge playroom for Levi to play in. We got a nice dinner. And a much homier environment. It definitely helped to relax Levi. And from a financial stand point it was definitely much nicer too. So Thank you David's House!! I am sure we will be back over the coming years!!

February 25 - Blood Work & Surgery Follow Up

February 25 - Blood Work & Surgery Follow Up

Today we had a surgery follow up appointment in Lebanon, so we talked to Dr. V's office about moving Levi's bi-weekly blood work to Lebanon as well so we didn't have to drive to Dover and then Lebanon. They agreed. :) His surgery follow up was at 10 and we wanted to get his blood work done prior to that, so we loaded up the car and left the house at 7am. Early morning! And to make it worse, our plan was to get up and get ready and then scoop Levi out of bed at 7, in his PJ's and put him right in the car, but he decided he didn't like that plan. And woke himself up at 6:30. We kept him in his PJ's for the drive anyways.

Driving to Lebanon.

The drive was long but otherwise unexciting. Slightly more traffic then normal, I think we actually hit rush hour instead of being after it. Levi did pretty good.

We got to Lebanon and got Levi dressed in the car before heading in to the hospital. We had heard two different things about where to go for blood work so there was a little scheduling mix up there that took a few minutes. But we finally got over to the right lab. Levi was not in a waiting mood at the lab, and there was quite the line ahead of him, so we had a few temper tantrums and melt downs. Finally it was his turn. The actual lab draw went as easy as usual. :) He got a snoopy band-aid. Dr. V said to call him 45-60 minutes after the draw to find out the results as he was expecting a possible infusion need. So we were happy that the time was started.

At this point we were getting very close to his Surgery follow up time. So we rushed upstairs. Levi wanted to go play so I waited in line to check him in while Jay and Levi played. When I got up to the counter, they started to get me all checked in and then said, "Dr. C (the Surgeon) isn't exactly sure how this appointment got scheduled, he doesn't normally see Port patients for a follow up. He said you can see him if you want to, but its not necessary". Are you kidding me?!?! We drove all the way to Lebanon for an appointment that didn't even need to be scheduled?!?! I was about ready to flip the handle bars. Jay and I decided that since we were already there the surgeon could see us.

Playing while waiting for Dr. C

We only waited a few minutes and then they called us in to see Dr. C. They did height and weight. I don't remember the exact numbers but they were definitely different then Tuesday, I believe it was something like 31lbs and 34.75 inches. It is so not an exact science to take the height and weight of a toddler. Dr. C came in and talked to us for a minute. He looked at Levi's incision and said that it was healing exactly how he would want it to. He also said that what we thought was a minor infection a few weeks back probably wasn't, and was instead just the white blood cells doing what they needed to do to dissolve the stitches. Interesting. One of Levi's stitches didn't dissolve it came out through instead (something Dr. C had told us was a possibility) so his scar isn't going to be completely straight, but instead have a little wobble in it. The whole appointment took less then 10 minutes.

Now we had more time to kill before we could call Dr. V for results. So we headed down to Molly's place to play.

Levi is up in the loft. He was so proud of himself for climbing all the way up and down by himself.

After it had been an hour after the labs we called Dr. V's office. We got Receptionist S, oh boy! At first I thought she was going to pull her usual and not let us talk to Dr. V, but then we found out that he was actually out of the office until 12. Apparently he didn't realize we were going to be there so early for blood work when he told us to call him. Now we have more time to kill. We decided to head to the cafe for a snack for Levi. (When in doubt feed him, Levi will almost always eat. :) ) We let Levi pick what he wanted, so he ended up with a hot dog, fruit, tomatoes, and chocolate milk. Yummy!!

Snack Time

Snack time wasn't long enough to kill all the time we had. So we started wondering the halls of the hospital waiting.

Hand rails are cool!! 

Look at all the people down there! 

It was getting close to noon and I figured that we could be calling his office soon. We were walking around and suddenly we ran into Dr. V. Talk about being at the right place at the right time. We have no idea where his actual office is, so it was truly lucky. Levi's platelet count is 180. Time for an infusion. However the clinic is closed on Monday's and Thursday's as on those day's the Pedi Hematology/Oncology clinic becomes the Pedi urology clinic. So we were scheduled for an infusion at 11:00 on Friday. We talked to Dr. V about the fact that we were just going to stay over in Lebanon so could we get in any earlier. He got us a slot at 7:30. We also talked about the fact that some of the results have come back from Switzerland. It is confirmed that Levi has USS (this was confirmed almost 2 months ago, but Switzerland reconfirmed). It was also confirmed that neither Jay or I do. A normal ADAMTS13 count is anything over 50. One of us is 56 and the other is 76. Due to privacy the study only reports family as patient A and patient B, so we don't know who is who, though we have our guesses. We also found out that multiple genes can cause USS, so Jay and I do not have to have the same bad gene to cause Levi to have this, and in fact we more then likely do not have the same bad one. Interesting.

Well now to settle in for a night in Lebanon. Gotta go find a place to stay and get Levi down for nap.

February 23 - Endocrinologist Appointment

February 23 - Endocrinologist Appointment

With everything going on with USS it is sometimes easy to forget that Levi has Congenital Hypothyroidism as well. His thyroid has been under control for quite a while so our routine is fairly set there. He takes his medication every morning and then eats 30 minutes later and life is good. We have not been seeing any issues from it lately. When he was younger we definitely had many times when we knew his thyroid was under or over active and we would need to get his meds adjusted. But lately everything has been pretty status quo. Today we head to our regular appointment with his Endocrinologist Dr. C. Thankfully this appointment is only in Manchester so its an hour drive each way instead of two hours.

All ready to head out.

Levi did great on the drive down, talking and playing, and only telling us that he was "STUCK!! stuck car seat" a dozen or so times. :) We got checked in and his height and weight done. According to them Levi has grown another 1/4 inch and is now 34 inches! And he was 30.5 pounds. We got settled in our room and waited for Dr. C.

Playing with Dr. C's chair while we wait for him

Tired of waiting. Time for a snack. 

The appointment went great. Dr. C said that Levi is looking really good and that the medication is doing what it needs to be doing. He thinks he is on an appropriate curve with his size as well as his development. So that was reassuring. Levi is due for labs, but we aren't going to stick him today just to do it. So we got a lab slip and will do the labs on Thursday when we do his next USS labs. Dr. C also thinks that Levi is doing well enough that we only need to be seen every 6 months!! WOO HOO!! :)

We got dressed and headed home! It's so nice to hear that something is going well. His thyroid was such a stress when he was first born and we were dealing with it with a tiny baby. Shoving meds down a tiny baby's throat every morning was not a fun experience or holding a screaming hungry baby that couldn't eat for an hour was so stressful. So it's such a reassurance as a parent to know that we did the right thing back then and it is helping him now. This is another thing that he will have for life, so we are never truly out of the war, but we seem to be winning the daily battle right now.

He's outta there! 

I got him to turn around and show off his stickers. He asked for Mickey, and the receptionist said that Pluto needed to go to, so he got two! Made his day. :) 

February 22 - Partner's in Health Intake

February 22 - Partner's in Health Intake

We had our Partner's in Health Intake today. Caitlin (our Family Support Coordinator) is AMAZING!! We had an amazing conversation with her and learned about a lot of the resources that are out there for us. We asked some questions that she didn't know the answer to but she will look into them for us.

One of the things I didn't know was that we can stay with Partner's in Health until Levi is 21! That will help us so much, to always have a resource that we can go to with questions and information. They will be able to go with us to school 504 meetings and advocate on Levi's behalf. They will let us know about all the things going on in our area that would be good for Levi and will grow with us and him as we travel through this journey. I am very excited to work with them.

We set up our goals for the year and what we were hoping to accomplish. It will definitely be a huge weight off of my shoulders when we accomplish some of them.

We also signed up for Parent to Parent which is a buddy program of sorts that will align us with other families in our area that are going through a similar situation (though not identical as there are no other USS patients in the area) and have a kid similar to Levi. We are looking forward to hopefully making some friends in the area.

I left this meeting feeling rejuvenated and hopeful that there are things and people out there that can help us!

A cute pic of Levi from the Children's Museum over the weekend.