April 18 - Blood Work

April 18 - Blood Work

This morning started very early, it's the busy season at work and my major contract is due on Wednesday so I needed to make sure that I was at work as early as possible. I got up at 6:20 and got Levi up at 6:50 and we were on the road by 7:05.

The drive to the lab was pretty standard. Levi sang most of the way, had a snack and some milk.

We got to the hospital and walked in. Levi wanted to immediately head to "his" fountain. I was able to get a few pictures today by getting him to agree to let me not stand in my spot!

"Water up high"

Looking at the water filling

We headed to see Nice Nurse and Levi was about to run right into the lab, I stopped him and signed us in, which was good because there was a guy already in the lab. Levi said "Other people's turn" with a sad look and I said yes. He did ok waiting and set in his own chair pretty good. There was a gentleman waiting at registration who had a good chuckle as Levi was singing "E-I-E-I-O" quite loudly.

Sitting and waiting his turn.

There was a magazine sitting on the table and Levi said "Auntie Martha" and got all excited. When I told him it wasn't Auntie Martha he said "No Auntie Martha It's Mommy!!" and was super excited. I had to tell him it was a person we didn't know. He got a little said, and said "don't know them".

Martha do you see the resemblance to us?! Yea, me neither!! I think we need to work on pictures a little more.

It was our turn, Nice Nurse told him to come in and pick his band-aid and we headed in. One of the ladies from registration had been in Nice Nurse's office finding some paperwork and didn't realize that Levi literally comes running, and she got a leg and thigh full of Levi. Levi stepped back stunned, and she was all apologetic. None of them any worse for the wear, but I think she was a little embarrassed.

Levi ran over to the band-aid cupboard and threw the doors open and bent down and saw his idols!! Marshall band-aids!! He was in little toddler heaven. I pulled one out and it was Rubble, I asked if that was ok, and he literally jumped up and down with excitement! Nice Nurse came over and was like "oh look you picked the puppies! I just picked those up this weekend" he looked at her and said "Rubble!" like she was totally awful for calling his precious Rubble a puppy! She said that she didn't know the characters, I told her that Paw Patrol is our favorite and she said she would remember that and make sure that she always had some on hand!

The draw went as well as usual! Nice Nurse really is amazing at her job! As soon as it was done Levi was off to the treasure box. He picked two balls, gave Nice Nurse her high five, and we were on our way.

After lab draw stop at the fountain.

 I checked his Potty watch and it only had 5 minutes left so we headed to the bathroom. At first he told me no, but then he said "Big Boy go potty" and happily walked to the potty. We had a successful trip and as I was pulling up his pants he looked at me and started repeatitvely sing songing "I getta get a donut, I getta get a donut" apparently he has decided that going potty at the hospital equals a donut. I said ok, you can have a donut and we headed off to the cafe. There was a long line and Levi wasn't really wanting to wait. He picked out his donut (the one with sprinkles) and we were standing in line waiting when he spotted the bananas. He said "Levi have banana". I told him he had to pick, banana or donut. He picked banana. I said, ok, Mommy has a banana in the car (there was one in my lunch box), he said "banana in car?" I said "yup" and he got out of line and headed to the car!! I was very impressed! As soon as he was buckled I gave him the banana!

The drive to daycare was very quiet, as he was eating pretty much the whole way. Daycare drop off was very quiet as Friend K was sick and so Levi would be the only kid at daycare. Levi was very bummed and kept saying "K not here yet" "K come". I did a quick drop off and was on my way to work.

The call came in at 11:10 with Levi's numbers. We were a little curious about this draw as he is covered in bruises from surgery on Friday and is healing, so using a lot of platelets. But the last infusion gave him the ADAMTS13 he needs to stay healthy as his numbers still came back at 287. An 11 point increase from Thursday!!

April 15 - Surgery

Levi's surgery went amazing!! It was a long day, but we made it through!

Our arrival time was 7:30 am at the hospital. Levi woke up at 6:30 at David's House. Jay and I got up and dressed and Levi got a clean diaper. He wore his PJs over to the hospital.

Good Morning!!! 

We were able to do meds so that kept his routine, but he wasn't allowed anything to eat or drink. We got to the desk about 7:20 and checked in. Levi was a very good boy, only asking for a cup a few times.

Heading to the hospital!

We waited our turn in the waiting room. Levi was antsy and fidgety. We met a lady in the waiting room who was dealing with her husband and daughter having a rare disease so we talked to her for a little bit about having a rare disease and what it means. It was neat to talk to someone else. Finally our name was called.

We headed out back to room 50 in the pediatric section. It was very nice. We had our own little room with a crib for Levi, and we would have that space all day, well until we were able to leave. We did the initial checks with the nurse and got Levi changed into a hospital gown. Then we had some time to kill until Surgeon Dr. C would come around to talk to us, so Levi was allowed and encouraged to go play in the play room. The play room was VERY busy. But Levi found a few things to play with and had fun.

Hammering is fun!

Playing

Surgeon Dr. C came in and we talked to him for a few minutes. Then the anesthesiologist came in and we discussed with him. We talked about how awful the wake up was the last two times, but other wise he had no issues, and he had been sick. Then we talked about how since he doesn't have an IV he will be put to sleep using a mask, and then they will put an IV in. Will be a little different process, but I will still get to hold him until he is asleep and then lay him on the Operating room table before I leave, so that made me happy. Child Life came in to the room and brought some books for Levi to pass the time. Then it was time to head down to the OR. Levi said good bye to daddy, and then I lugged him down.

Hugs for daddy!

We walked down to the OR. We got into the room and they were setting everything up. The anesthesiologist that would be staying in the room was there and ready, but we had to wait for the head anesthesiologist who has to be present for the beginning part as he was busy with an emergency. Levi, me, and the nurse discussed the pictures on the wall, and the very faded pooh stickers. Finally it was time. Levi set in my lap under several warm blankets. They put the mask on his face and wanted him to talk and take deep breaths. He squirmed some but not as bad as they told me he would. He looked up at me and said "I love you Mommy" at one point. It seemed like forever, but was probably only about 30 seconds and he was asleep. They helped me lay him on the bed as I was sitting in the chair. I gave him a kiss, and then was whisked out of the OR so that they could begin their work. I was escorted back to room 50 where Jay was waiting for me.

Jay and I headed to the cafe to get some breakfast, as we didn't know when we would be eating next, and we knew we had some time to kill.

Breakfast Time!

After about 40 minutes we headed back upstairs. Another 20 minutes later our pager went off. We went to the desk and the receptionist told us that his status had changed from "surgery started" to "out of surgery" and that Surgeon Dr. C would be up shortly to talk to us. We had known about the surgery status change as we were closely watching the monitors (each patient is given a number and you can follow along with the status of their surgery).

A few minutes later Surgeon Dr. C came out to talk to us. We went in the consult room to discuss. He said that he had gotten in and had not been able to easily find a reason why his port wasn't working. There was no obvious build up or issue. He replaced the whole port as the port does not have a detachable catheter as its a low profile port because he is so small/young. He made the catheter shorter this time so that should help. We talked about the recovery and he said it should be the same as before. He can shower on Saturday and bath/fully immerse on Sunday. There wasn't much more to discuss, so we headed back out to the waiting room for our pager to go off again saying he was "ready for company" ie. he was starting to wake up.

We waited. And waited. And waited. I kept a very close eye on the monitor. In January, he was waking up at the same time that Surgeon Dr. C was coming out to see us, so we were wondering why it was taking so long. The monitor said about 55 minutes of being out of OR before our pager went off that we could go see him.

Jay and I headed out back, both excited to see Levi but also slightly dreading the wake up. It was hell the last two times, and we just weren't looking forward to that. We got to room 50 and he was just starting to stir. But then he asked for Mommy and set up. He was happy!!

First Wake up picture, sitting in Mommy's lap!

After only a few minutes in my lap, he was asking for a drink and a Popsicle. There was NO crying! Not a peep out of him! Except happy sounds and giggles! It was amazing! 

Popsicle Number 1

He was doing so well that they were able to take his IV out right away, so that he could move around. It came out of his foot no problem, but did bleed more then normal. We were taking a look at his feet and realized that even when he was asleep they had a hard time getting the IV in. There are at least 3 IV attempts in his feet! We found out from the nurses that he was given a different medicine this time that takes them longer to wake up (hence the longer time in the waiting room) but that usually makes them wake up happier, and boy was she right!

Levi finished his first popsicle. He handed me the stick and said "Mommy get some more!" So we are on to popsicle number 2!

Popsicle Number 2

Even with him doing so well we knew that we were going to be there for awhile as he has to stay at least an hour after wake up. The nurses were amazing. One of the nurses brought him 2 sticker sheets, a page of Mickey and Minnie stickers and a page of Sesame Street stickers. Levi was very excited and immediately started peeling them off the sheets. After he got the first sticker off he realized that he didn't have a shirt on, it slowed him down for a second, but didn't stop him. He just stuck them to his belly!

Peeling Stickers off. 

All the stickers on his belly!

He finished his second popsicle, and looked up at Jay and I and said, "more please" and "get some more", so we were off to three popsicles. 

Popsicle number 3

He ate about half of the third popsicle and was done. As it was getting close to our hour and he was doing great we started to get him dressed. He was also drinking apple juice at this point. 

All dressed and ready to go!

The nurses gave Levi a dose of Tylenol (the only pain meds he needs) and we were free. We carried Levi out to the car, and the surgery was over! 

All done! Very tired little boy!

Let's hope that this port works much better then the last one! We figured it out that it was 3 months to the day from the first surgery to the second (January 15 to April 15), we are hoping for 3 years or more before the next one. (Ports can last for 10 years in the human body, however in growing children they generally only last 3-4 before the catheter is too short and has to be replaced, meaning the entire port has to be replaced). 

April 14-15 - Fourth David's House Visit

April 14

Levi had a pretty good day at day care though Miss T told us he had a rough wake up from nap and had a hard time coping at snack time.  Levi was happy to get to play with D and S, who haven't been at day care much lately.

We picked him up from day care and headed right to David's house.  It was a long drive, as usual but the stop at Wendy's in the middle helped to break things up some.  Levi ate 1 chicken nugget and a few fries...just enough to earn his "special treat," a small chocolate frosty.

As you can see he thoroughly enjoyed it!

We checked into David's House with Z the volunteer again, he didn't remember us, but we talked to him for a few minutes. He is pre-med and always very curious on what people are here for.

This time we are in the Circus room! It's the first room we have been in that doesn't have two single beds in it. We are on the first floor again this time. It is definitely not my favorite floor as it has the play room on it, and the older kids are still playing Wii and it's loud.

After arriving at David's House we played and unwound for a while. As soon as we got to the playroom Levi immediately had to find the ice cream cones and hand them out according to flavor/color; Mommy gets the pink ones, Levi gets the white ones, and Daddy gets the chocolate ones.

Levi especially liked seeing the "guys" come out of the musical clock at 8:00.  Levi was very tired tonight so for the first time while being here we put the TV on and let him watch the beginning of Horton Hears a Who.

So Tired!!

"Sit on Plane Watch Elephant"!

After a dessert snack, a little more to drink, and one more trip down the slide, we started the bedtime process.  As of right now (9:30pm) we're doing the "sit in the hall while Levi fights sleep" routine.

Last slide trip of the night. 

Levi finally fell asleep around 9:45pm. Good Night All. Will update more tomorrow!

April 15
The morning started early as is the usual at David's House. Levi was awake, but not really sure how much he wanted to get up.

We started to get up and get ready. We took pictures in the room. Levi loved the stuffed elephants and wanted to hold them.

Once Jay and I were dressed we headed over to the hospital. Since Levi was going to have to change for surgery anyways, we left him in his PJ's.

After the surgery we headed back over to David's House for lunch. Levi had some Easy Mac and Jay and I had sandwiches from the left overs from the donated dinner the night before. They were yummy and we were all full after. Then Levi headed off to play for a few minutes while we cleaned up from lunch. Then it was time for a nap. That went about as great as ever. Took about 45 minutes for Levi to settle down and ended with Levi and me both falling asleep together, because the only way I could get him to settle down was to hold him, and at that point I just slept too.

After a very short nap, we headed to the play room to play for a few to see how Levi was doing. He had a good time playing. Jay and I discussed how Levi was doing and he was doing great, running around like a little crazy man. His incision looked fine (no additional bleeding) and we decided that it was ok to go home on Friday instead of staying over to Saturday. As we were loading up the car, the clock started ringing and Levi rushed to see it.

Levi watching the clock.

Pointing to the clock.

What the clock looks like on the hour. It plays a song and lights up and all the guys sing. 

What the clock looks like the rest of the time.

We loaded up the car, cleaned the room as best we could and checked out a night early, freeing the room up for someone else hopefully.

On the way home we stopped for dinner in Concord.

Levi being a little ham! I think he's feeling just fine!! 

Sunshine Buddy Box

Levi received a box from his Sunshine Buddy Mary on Tuesday night. He was soooo excited!! We wanted to send a shout out to Sunshine Mary and say Thank you!
The sunshine program is amazing! Here is the link if people are interested in being sponsors, we are very grateful for ours: Sunshine Buddies

Lugging the box in the house

Trying to get it open. 

Daddy got the card free from the box, now Levi is trying to get it free from the envelope. 

Finally got the box open!! 

Got to the candy!! That made Levi's day!! 

Pointing out all the puppies on his shirt! 

Thank you Sunshine Mary!! 

Made Mommy open and build his new go-go and wanted to play with it so immediately, that we couldn't even move out of the entryway!! 

April 14 - Blood Draw

April 14 - Blood Draw

Levi decided that 6:20 was a wonderful time to wake up this morning. When I went in I think he had decided it was a weekend, because he looked at me and said "stay pj's watch puppies" which is our Sunday morning ritual. I had to tell him that it was Thursday and not Sunday. Then he looked at me and said "I lay down" and proceeded to lay back down on his pillow. It was very cute, but a little frustrating. :)

Levi and I got up and got ready and headed out the door. The drive to the lab was the normal morning commute drive. Levi sang Twinkle Twinkle Little Star on repeat for about half the drive. He doesn't understand when the song is over, so it becomes the never ending song. Very cute! But will drive a fella a little crazy.

We arrived at the lab. Levi immediately went running to his fountain. He watched it for a minute and then we went in to see Nice Nurse. There was no line no waiting so we were right in. Levi picked out his band-aid, a giraffe, and set still for the draw. He still isn't used to the two tubes and gets annoyed that it isn't done after the first one. As soon as the needle was out of his arm he was off and running to the treasure box. We had a hard time deciding today, it was a definite indecision day, but he finally settled on a yellow whistle. Nice Nurse tried to give him a water gun too (the new stuff that she hadn't put in yet) but he kept saying "No, No Thank You" so she finally gave up. I am not sure he had any idea what a water gun was.

We headed out to visit our fountain again. Levi asked for a donut, but I said not this morning, and we headed on on our way.

The drive to daycare was uneventful. We got to daycare and did a quick drop off and I was on my way to work.

Dr. V called us himself around 11am with the test results today.  Levi's count was 276 which was about a 50 point rise from last week.  He also told us that Levi's LDH was still elevated and as such didn't seem to be much of an indicator of where Levi was in his platelet cycle.  We're still going to track it for a while and see if we can observe any trends.

It was so quick today that I didn't get any pictures, but here is one from the other morning! 

April 7 - Blood Work

April 7 - Blood Work

Levi and I got up and got moving early in the morning to get to the lab at an early hour. We got there and there was no line no waiting, but we had to go back to registration again since Dr. V had changed the orders. The new orders were not at the lab so the nice receptionist called Dr. V's office and got the over pleasant Receptionist S. She was overly joyous to the receptionist and claimed that she had already sent the orders, the receptionist at WD said that she had never heard of the fax number that Receptionist S faxed them to, and could she please fax them again. Several minutes later they did come in.

Once the new orders were in we headed back over to the lab. Nice Nurse had to get the orders ready so we waited in the waiting room for a minute. Levi did a pretty good job waiting.

It was PJ day at daycare, he doesn't generally wear his PJ's. 

Finally it was our turn to go in. Levi ran in and got his band-aid. He picked bugs bunny. Nice Nurse came over and the blood draw went as well as usual. With the new orders he now has two vials of blood to give, a purple one and a green one. He was a little upset that we weren't all done once the purple one was filled, but he did ok. Once the band-aid was on he went under the barrier and headed to the treasure box. He picked 3 balls out of the treasure box, gave his high five to Nice Nurse and we were off. His potty watch had gone off while we were in the chair so we headed to the potty, for a successful trip.

Levi had been such a good boy while we waited at registration and then at the lab, that I told him he had earned a donut. At first he was upset that there wouldn't be any green ones, but he picked one out. I figured he would go for the chocolate frosting with sprinkles one, but instead he picked out a chocolate glazed. We bought the donut and headed to the car.

Yummy Donut!

He ate about half of the donut on the way to daycare, and then got very upset that his ducky was covered in donut and needed me to wash him right away. We got to daycare and I shook all the donut off of ducky and we were happy with that. Drop off went well and I was on my way to work.

Levi's numbers came in at 11:04, he is at 227. So an increase but not a huge one. It did a similar thing last time after the infusion so we are assuming that it will continue to increase and by next Thursday the numbers will be higher.

April 5 - Infusion #7

April 5 - Infusion #7

We got over to the hospital and got checked in and headed out back. We said hi to everyone. As we were walking in the little boy that we had seen at the lab on Monday was getting his vitals taken. He said hi to Levi and waved. Small world. Just makes me realize even more how many people make the long trek from the seacoast to Lebanon. We got settled in the fish room (which I think is my new favorite). The playroom was still closed (uh-oh, gonna be a LONG day), but they still had the cozy coups out and Levi made himself to home pretty quickly, running around the hallways in the cars, and pushing the dolls in the shopping cart and stroller. Nurse A asked for Levi to sit for his vitals. He did a pretty good job, but it took multiple tries to get his blood pressure and O2 as he didn't want to sit still for very long. Also took a couple of tries to get his weight, they really need to get a digital scale instead of a manual one, kids just don't stand still for that long without touching anything.

Attempt number something at getting his O2. Sitting on his own with Daddy and Nurse A close by.

Then it was time to get his port accessed. Nurse T was doing the stick today. Levi really likes Nurse T and was all smiley and happy. The initial stick went just fine as per usual. The numbing cream did it's job and Levi didn't even feel a thing. The worst part is having to hold his head so he doesn't breath on the opening until they get it covered. He really doesn't like being restrained like that. Then came the fun part, we had to get blood out of his port, a task that should be super easy. But once again his port just doesn't want to give up the blood. We did the blood dance. Arms up, Arms down, one up one down, wiggle, sit up, stand up, lay down, turn your head left, turn your head right. Nothing was working. Finally Nurse T got enough of a return that she felt she could send it down to the lab to get counts. She capped off his port and we were off and running again.

Getting the area properly cleaned before the needle is inserted.

Doing the blood return dance. Levi is not amused! 

Nurse T asked us if we were in any rush, and I said nope. So she wanted to talk to Dr. V about putting TPA into his port. Dr. V agreed and the TPA was administered. TPA is used to break up any fiber or clots that may have formed within the port. The TPA needed to stay in his port for 1 hour and then it would be pulled out, and the hope is that anything "bad" would have been broken up and would be pulled out with the TPA. We were off and playing while the TPA did it's job. There are two baby dolls at the clinic, but Levi really only likes one of them. So we spent a bunch of time running back and forth with the shopping cart and then the stroller, but each time we switched we had to take the doll we liked out and switch her to the other device. It was cute, and kept him occupied. He also kept stopping for snacks.

Drive Drive. 

Giving dolly a ride. 

Dr. V came in to talk to us and to examine Levi. Levi's platelet count is 133 today. :( A pretty serious drop in just 1 day again. We are beginning to question if the two labs are calibrated the same. Dr. V also talked about how he presented Levi's case at a conference of his colleagues last week and that with some discussion with another doctor he would like to change Levi's standing orders to also test his LDH and that possibly this number will be a foreshadow of what may be happening, a drop or rise in platelet count. We didn't see any problem with this, it's a second vial of blood, but since he is already getting stuck its not a big deal. Dr. V looked at Levi and didn't see anything out of the ordinary. We discussed our next appointment. Dr. V is very comfortable with the 3 week schedule and really does not want to waiver from that no matter what numbers are (unless they drop very low very quickly), so that is our plan. Every 3 weeks. Our next two appointments will only be 2.5 weeks as 3 weeks from now we are at camp and Dr. V does not want us to miss any of the camp experience or have any worries. We talked to Dr. V about our issues with Receptionist S and with K and he told us to call whenever we wanted and to get all the information we wanted and that he would discuss their professionalism with them.

After the hour was up we headed back in to hopefully see the magic of the TPA. But the magic wasn't to be had. Nurse T tried with every trick she had but we were unable to pull the TPA back out and none of the crud came with it either. Moving on to the next stage to see what is up with the port. Nurse T and Dr. V as well as Jay and I had a discussion about the next steps, and we determined that it was time to visually see what the port was doing. So we were off to radiology to get a chest x-ray with dye to see the port in action.

Getting a ride to radiology.

The radiology lab was quick and we were right in and right out. Levi did a great job. Jay held him on one side and I held him on the other and he lay perfectly still. :) He got a bear and stickers out of the deal so he was a pretty happy little fella.

Getting his new bear.

Heading back to clinic.

At this point it was about 12:30 and Levi was getting both exhausted and hungry. Jay headed down to get lunch and I stayed in clinic with Levi. Dr. V came back in with his lunch and said that he had just gotten paged which he assumed was the radiologist results. This was no more then 15 minutes after we had left the lab, so was amazing how fast they were on things.

Levi's chest x-ray.

Dr. V, Nurse T, and I stood around looking at the pictures and discussing. To explain the picture a little above, the big black circle is the port itself. The line that extends out the bottom of the port and goes to the right is on the outside of his body and is only there because the port is accessed during the x-ray. The line that comes out of the top of the port and twists to the right before going to the left and ending is the catheter that is inside his vein. The picture clearly shows that the catheter is kinked under his collar bone and that the catheter runs too far down inside his vein, it is far too long for his little body. All of this would explain why we have trouble with blood returns. Dr. V will be discussing with Surgeon Dr C about what he thinks we should do. The port is clearly working for in though so we can complete the infusion as needed. Nurse A headed to the blood bank to collect his FFP. I was doing everything I could to keep Levi awake and not going crazy. Nurse T got down on the floor and played bubbles with him! Man did he have a blast!!

Bubble Time!

Jay got back with the food and Nurse A got back with his plasma at essentially the same time, so we headed into the fish room. Levi picked out the "crazy people" movie again (aka. Inside Out). We set up the movie and his lunch and Nurse T got his plasma going. It was a good joint effort. We found out that Dr. V has ordered the increase of the rate of his infusion since he has been doing so well with them, so instead of 70mL/hr we can go at 100mL/hr! Awesome! We will be giving him the full bag again today as it is 236mL and Dr. V ordered 220mL. A little extra is always better and wont hurt him. So we settled in for the long wait.

Eating lunch.

Getting tired. Relaxing.

Levi desperately needed a nap at this point, but he was fighting it so much.

Half asleep with his cookie in his hand, but refusing to give in.

Any time he thought he was going to fall asleep he would force himself awake. It was painful to watch. Finally I climbed in bed with him and held him until he fell asleep. Only took about 5 minutes of forcing him to be still and not keep himself awake and he was out cold. Jay headed out of the room as he was antsy, so since I was bored, and couldn't move, I decided to take a short nap too.

His pump went off that the infusion was done and Nurse T came in to switch it over to saline in order to flush the line. She noticed that Levi was sleeping and said that we were welcome to stay as long as we wanted even after the infusion was done so that he could sleep. I considered this but at the same time it was getting late and we were all ready to be home.

When Nurse T came in to un-access his port Dr. V came in with her. He had talked to Surgeon Dr. C and they had compared the pictures from today to the pictures taken during surgery, and they do not look anything alike. He is unsure how Levi's catheter has snaked that far down and kinked like that. He believes that Levi needs to have this repaired in order to have his port working better so we will be heading into surgery again soon, hopefully before Levi's next infusion on the 22nd.

Then it was time to head out. Levi grabbed his lunch box and was on his way as soon as we told him he could.

Blowing this popsicle stand!

We thought Levi would sleep in the car on the way home, but he stayed awake and talked and sang the whole way. It was a less stressful drive then we assumed, since we would be hitting Concord at 5:30, but rush hour wasn't bad, and we made it home a little after 6.

Next Steps: Next infusion is on April 22nd, hopefully having surgery before then to repair the catheter in his port, continuing with once or twice weekly blood work but adding an LDH count to the orders.