Zayne's Heart

May 1, 2020 · 1:00 am

An “Easy” Day

Notes from room 3203 at Children’s Hospital Colorado in Aurora on April 30, 2020: Zayne work up feeling sick from the AGT (“Rabbit”) and the Eculizumab (let’s just call this one ECU because I can’t say it) treatments.

I requested that Zayne receive the treatments at night so she can sleep through them instead of suffering. After a few hours of not feeling so good, she was able to spend the rest of the day in relative comfort – if you don’t include heart hurting, fingers tingling and hand tremors (probably due to a brief calcium deficiency), the constant discomfort of the PIC and IV lines, arm hurting from the failed IV attempt, headache, stomach ache, and being forced to do a lot of things that she doesn’t want to do.

Her Milrinone (vasodilator) was doubled, and this increased her ejection fraction from 25 to 40. For some reason, the fluid increased around her right lung. So, liquid intake is being restricted – Zayne was not happy about this new development. And Zayne has been ordered to walk around more and get out of bed. She was able to go outside on a balcony, and we played cards with her nurse for a while (the ER is not crowded). It is good for Zayne to just sit in a chair. Today was her “happiest” day in the ICU. She received gifts that brought her joy, got to go outside, and had a nice surprise when she had a video call with Aunt Vanessa and realized she was in our house.

Playing cards outside on the ICU balcony

Zayne ran out of steam before she completed her required walks. I still took her on her walks, but she was tired and not happy.

Oral medicine time takes place at least 2x/day is getting to be very difficult. Zayne is taking A LOT of medicine and the taste of most is disgusting – apparently grape Tylenol is horrid. Some of the meds are really repulsive, and not just because she doesn’t like the flavor. There may be a silver lining since she is agreeing to try pills. We’ve practiced swallowing mini-M&Ms at home, and she has swallowed really small steroid pills in the past. Today, for the first time, she swallowed a Tylenol pill (cut in half) with applesauce. At tonight’s rounds, I requested all meds be in pill form that can be cut to a size no larger than 1/2 a Tylenol. Some meds like have to be in liquid form. For example, Nystatin, must be swished in the mouth and swallowed to prevent thrush.

Kitty stuffies are lending support to medicine time. The face says it all, and the mouth was staying shut. Unfortunately, meds are not optional.

Friday’s schedule has an early morning plasmapherisis, followed by “Rabbit” (AGT) and intravenous immunoglobin (IVIG) therapy. IVIG is a processed form of immunoglobulin that is made from blood plasma, and contains helpful antibodies that are added to the bloodstream. I believe AGT and IVIG will be done at night when Zayne is asleep. This means that we may be able to walk around, sit up, and not feel too badly (I hope) after plasmapherisis.

1 Comment

Filed under Uncategorized

April 29, 2020 · 11:51 pm

Rejection Is A Dirty Word

The day started with Zayne comfortable, alert, happy, and eager for a pasta breakfast. As usual, her eyes were much bigger than her stomach. I announced my plans for her to do a couple of school assignments during the day and to go for a walk around the ICU. However, by 9:30 she was slumped down, tired, and not talking much. We reviewed assignments,but she cannot concentrate, so opted to “read” a book that is narrated. Lesson learned – if she is happy and alert, go for a walk and do anything else that would use brain power.

While waiting for the biopsy results, we enticed Zayne to go for a walk to get a toy from the treasure box.

The biopsy results came back in the early afternoon. Not good news. In addition to the cellular rejection, she also has donor specific antibodies (DSA) attacking her heart. Another word that chills my spine – necrosis. I wasn’t prepared to hear that word when describing one of Zayne’s heart biopsy samples (out of 5).

DSA means that I got to learn about Plasmapheresis. Zayne was so scared about this procedure, that I had to lay with her in her bed and hold her hand throughout. I was in bed with her for 3 hours, because her lines clotted and had to be de-clotted – that was an extra hour. Basically, they processed 1.5 times her blood volume, replaced her plasma with albumin, and put it all back into her body. Those two PIC lines that were put in during her heart cath came in handy. She tolerated pretty well – there isn’t pain or discomfort, except for jostling the PIC and IV lines which hurts.

Watching Angry Birds while squished in the bed

The transplant doc wanted me to talk to him when I was in bed, but Zayne wouldn’t let me leave so he had to come into the room to describe a new treatment strategy that he wants to try – Eculizumab. It is a relatively new treatment for heart transplant rejection, and I think it has only been used once before at Children’s in Colorado. With other large transplant centers using this treatment, and Zayne’s heart being in such bad shape, I gave it the green light. Unfortunately, she should have a Meningitis vaccine, but doesn’t have time to get one since the treatment is beginning tonight (well, at 2 am).

I attend rounds at around 8:30 am and 11:30 pm every day. She is tachycardic and they can hear a “gallop” when listening to her heart. There is a lot of other medical talk and acronyms that I try to understand.

Zayne is exhausted and is sleeping through her “Rabbit” infusion. The night time Lasix is being withheld so she should not have to wake up to pee multiple times during the night. It is a process to get out of bed – getting unhooked from some instruments and dragging lines around for the ones that can’t get unhooked. Zayne refuses to use a bedpan.

A therapy dog came to help get Zayne ready for bed. She was so happy, and got a huge smile on her face – it was good to see.

Ralph the Therapy Dog saying goodnight to Zayne

4 Comments

Filed under Uncategorized

April 28, 2020 · 10:53 pm

Cath Day 4/28/2020

This morning Zayne woke up alert and feeling good . However, the lack of sleep and inability to eat or drink took their toll.

It was a long wait without food or water

By the time the heart catheterization lab wheeled Zayne’s bed out of her ICU room, she was not feeling well, very hungry, thirsty, scared, and not that talkative (except when she started to cry when the team showed up to wheel her away). She was placed on Versed to make her sleepy and forget (I used to call it ‘drunk baby’), so she stopped screaming as she left her room.

Every catherization has its dangers, but Zayne had never had a cath when in rejection (she had never had rejection). It really came home what might happen when I was told there would be a team ready to set her up on ECMO (similar to a heart-lung bypass machine) or place her on a ventilator if things went south. Her ICU room felt very empty when she was rolled out.

Good News: The procedure went as planned
Not So Good News: There is significant rejection
Waiting News: Need to wait for biopsy results on Wednesday morning to determine a course of action.

In case the biopsy has not so good news, Zayne had 2 PIC lines placed on each arm (in addition to an IV that is working, and an attempted IV that just hurt).
If the biopsy shows antibody rejection in her heart muscle, she will probably need plasmapheresis. Plasmapheresis filters the blood and removes the harmful (along with the good) antibodies – basically take blood out of one PIC line, filter out the antibodies, and put back into her body into the other PIC line. I hope this doesn’t need to happen, because….. I don’t want to think about it, yet.

At 10 pm, the first 6-hr infusion using ATG (anti-thymocyte [rabbit] immune globulin) was done. We affectionately call this one “The Rabbit”, but it was miserable for Zayne. She was given meds to help ease the side effects, but it was still a very uncomfortable experience. She can look forward to many more of these experiences.

Last week – something obviously wrong. Can kick myself for not taking her in right then.

Zayne’s blood oxygen is dipping into the low 80s while she is asleep. The nurse just put her on Oxygen, but I have never seen her keep a cannula on her face when under the chin and against the neck is more comfortable.
———————————————————————————————————-

Pre-Rejection Photo Gallery

Skinny dipping at night in Grancie and Pop-pop’s pool

1 Comment

Filed under Rejection

April 27, 2020 · 11:59 am

No News Was Good News, Until It Isn’t

Well, I had been planning to post an update on how well Zayne has been doing. Riding Horses, doing Taekwondo, riding her bike, playing with her cat, exploring outside… But, I was too busy to post anything. At 1:30 am, I find I cannot sleep in the Cardiac ICU.

We are back after nearly 5 years after leaving this ICU. I couldn’t get Zayne to play outside – she was tired and sleeping more than normal. She was eating a lot less than normal. Hands and feet seemed cold and purplish, but she wouldn’t put on pants or a long sleeve shirt, and she was getting winded walking up the stairs in our house. Memories from pre-tranplant time started to flood my mind, but she was probably just sick. We have been so careful to stay out of stores and protect ourselves during the Covid Pandemic.

On Monday, April 27, we reluctantly went to the ER after conferring with a transplant nurse. Going to the hospital was not where we wanted to go during these scary times. My fears we confirmed – Zayne is in rejection and her heart is failing.

There is fluid around her heart and lungs. No wonder I couldn’t get her to eat or drink much. Her heart isn’t pumping well. Tomorrow (Tuesday), we’ll get test results back and learn what type of rejection. Heart cath and biopsy is scheduled for around 11 am.

Stay tuned.

ER – after the Covid test. Yes, they stick the swab up your nose into your brain.
—————————————————————————————————————————

Pre-Rejection Photos

We made matza. They made for good frisbees. Next time, roll really thin.

4 Comments

Filed under Rejection

June 29, 2018 · 6:09 pm

Happy 3rd Heartiverssary!!!

Today, is Zayne’s 3 year anniversary for receiving her gift of life – a new heart. At this time on July 28. 2015, Zayne was taken back for surgery that removed her diseased heart and replaced it with a healthy organ.

While we celebrate Zayne’s health and vitality, another family is grieving their horrible tragedy. While we watch Zayne growing and thriving, another family is wondering what their child would be like if tragic circumstances didn’t intervene. We celebrate while remembering and thanking the donor family for their unbelievable gift given during their grief and mourning.

Zayne’s health is great, and her heart is working perfectly as confirmed by a heart catheterization performed at the beginning of June. She is growing up, and for the first time, didn’t need to be sedated before the procedure.

As with every heart cath since Zayne was 14 months old, my parents traveled to Colorado.

Much to my dismay, we were adopted by a stray cat. Zayne loves Scottie, but is not allowed near the litterbox due to being immunosurpressed.

Zayne is enjoying horseback riding lessons.

1 Comment

Filed under Uncategorized

August 17, 2017 · 5:26 pm

1st Grade

No news is good news. Zayne has been doing really well, and the hospital visits and blood draws are not as frequent. She is on 2 medications to suppress her immune system so that her body doesn’t reject her heart. This means that there are unexplained fevers of 105 for a day or so every couple of months, and winter is spent going from one illness to the next. I even got to experience strep for the first time in a couple of decades .

Zayne was really excited to start first grade, today.

There will be more posts with pics (this was all I could get done on my phone during Zayne’s swim class).

A few other pictures:

Nice treasure ($40) found in 5 ft of water.

Hike to Lilly Pad Pond, Summit County

2 Comments

Filed under Post-Transplant

June 30, 2016 · 1:19 am

Happy 1 Year Heart-iversary!

June 29, 2016

Today, June 29, marks 1 year since Zayne received her gift of life. Her new and improved heart has been beating in her chest for 1 year! She has been growing and thriving. The proof is in the numbers: in 1 year, she is over 5 inches taller and 10 pounds heavier.

Her eating has improved, but is still drinking Pediasure 1.5 to supplement her diet. For the past couple of months, we’ve been going to feeding therapy at the hospital.

June 29, 2015

This is what I was looking at 1 year ago after 5 hrs of surgery. I wondered if I would ever see Zayne again, and if her personality would remain intact. I didn’t see her first real smile until 4 days after transplant, and she was running around the hospital on the 5th day after transplant.

June 24, 2016 – prior to cath

REJECTION = NONE! Zero. Nada

Zayne’s new heart is doing really well – the cardiologist just examined the inside of her heart. Last week, she had her first post transplant heart catheterization (right and left side of her heart). Having to be flat on her back and still for 4 hours was helped by sleeping through 1/2 of the time. The other 2 hours were a bit more challenging, but we managed to keep the compression bandage working. Because her heart is working well and doesn’t measure any rejection, her next cath will be in 2 years. As much as we love the hospital for giving Zayne a life, we don’t want to spend time there.

Zayne tried skiing this past year, and will be doing more next year. She just started to swim (pretty good considering she just started to get her face wet and go underwater in December). She is riding a 2 wheeled bike (no training wheels). She runs. She hikes. She throws snowballs at her mommy. She loves going on amusement park rides.

Dec 2015 – Harley Toys for Tots ride. Zayne got to ride in an antique fire truck.

Riding a bike (you wouldn’t know she is wearing a Holter monitor)

The girl loves cars. We go to car shows to see ‘old fashion cars’

Ran up the hill because it was there

Hiked 4 miles! Better to throw snowballs at her cousin than at Mommy. Unfortunately, I spent time running away from both of them.

May 2016 – Preschool Graduate

Bling

Skiing on her own (after a little push)

Loves dresses

She loved this ride. I was hoping she wouldn’t fall out of the adult ride (I get too motion sick to do this type of ride)

4 Comments

Filed under Post-Transplant

September 15, 2015 · 10:34 pm

First Day of School

Zayne woke up this morning and told me “First day of school with a new heart!”

Preschool has been in session for nearly 1 month, and Zayne is ready to join her friends. She will start out by attending for a few hours in the morning. Eventually, I hope to get her back to a full day. When I last brought Zayne to school on June 29th, I had to carry her from the car into the school. This time, it was a different story – she ran!

Not only did she run to the school, but she ran around the playground and climbed on equipment. While walking back to my car, I saw Zayne running with a couple of friends trailing behind her. With her old heart, the playground was a place where she just stood and waiting for playtime to end (unless she was on a swing). Not only is she running in the playground, but she played on equipment and played with friends. Her new heart has changed her both physically and socially. I’m glad that she is no longer standing by herself in the playground. Her new found energy also resulted in her first incident report for the year on Day 1. I hope that isn’t a trend.

Climbing at a different playground (not at the school)

Zayne really wanted to wear a backpack when we went on a hike. After 10 minutes, I got hook her pack onto mine for the rest of the day. At least she had fun packing it with band-aids and snacks.

1 Comment

Filed under Post-Transplant

September 1, 2015 · 10:40 pm

Mamma Mia

Taking bad tasting medicine twice each day is meeting more resistance. Sometimes the meds hurt her stomach, sometimes they make her gag, sometimes she just doesn’t want to take them. We have been playing Rocket Ship for the past 2 months, but the rockets are flying all over the place and keep getting ‘lost in space’ – these syringe rockets are taking longer and longer to fly in the mouth shuttle bay at space station Zayne. This evening I came up with a new weapon to get Zayne to take meds: singing and dancing to the Abba song “Mamma Mia”. Since there are now 3 meds at night, we also danced to Dancing Queen to get the final syringe finished. I don’t think singing and dancing will work when I have to wake her to take meds, so it will probably just be an evening event.

Last week, Zayne attended her first swim class since transplant. I didn’t recognize this kid. She was so happy, excited, and yelling that she wanted to be the first to go out with the instructor. Before her new heart, I had to bribe her to participate in class. She would often tell the instructor “no thank you” when asked to demonstrate a skill. She is on the road to learning to swim!
Zayne could barely squeeze into her bathing suite since gaining 4 lbs since the last time she last wore it 2 months ago.

Zayne received a pair of custom decorated Converse sneakers from Peach’s Neet Feet. This organization creates custom, hand-painted shoes to celebrate children who are fighting cancer and living with disabilities. Zayne picked the decorations on her shoes: stegosaurus, woolly mammoth, shark, and her name. Zayne tells me she can run really fast with her new shoes (close-up pics on Facebook ).

She is still not cooperating during her twice each week clinic appointments. I think she is getting tired of 7 am hospital visits which involve blood draws, echo, EKG, height, weight, and physical exam. At least the blood letting has dropped to just once each week. I like the idea of the EKG stickers over her mouth, since she can’t complain when her lips are stuck together.

Zayne is thrilled that her cousin, Liza, is back after being away all summer.

2 Comments

Filed under Post-Transplant

August 23, 2015 · 5:14 pm

Scooter Sees Light of Day

The purple scooter has gone outside and is staying outside. Zayne received the scooter last year during the winter and liked riding it in the house. She did not want to ride the scooter outside; probably for the same reason that she wouldn’t ride her bike – lack of stamina. When she got home from the hospital, I packed away all outdoor riding toys so she would not be tempted to break her sternum restrictions. The scooter was left in the house, because it is stable and she didn’t do much on it. After transplant, the indoor scooter became a danger because she was going wild and fast. Indoor riding had to be restricted, but the day her restrictions were lifted, she was riding fast outdoors and not looking back. We ride scooters every day (I got one too, since I do not want to be left out of the fun).

Zayne is down to 2 medicines twice each day, and only one blood draw each week. She still is seen at cardiology clinic twice each week and receives an echo and ECG each visit. Zayne is doing well and doesn’t have any graft specific antibodies (that is a good thing – no antibody rejection for her new heart). I think she is getting tired of clinic visits, getting poked, and being told what to do all of the time. She is not cooperating during the visits. It took 2 nurses to try and get a height while Zayne laughed and kept her heels off the floor.

It seems to be snake season in Colorado. In the past week, we have come across 3 garter snakes that meet unfortunate circumstances (car tires and garage door). Zayne decided that she should earn a dollar for each snake. Somehow, she corrupted the idea that paid her money for spotting wild animals while on car trips. She was so excited, that I had to pay up.

We just watched the US Pro Challenge bike race go by our neighborhood. There was so much build up and excitement for 10 seconds of the Peloton going by. Zayne said “is that all?”
She was a little disappointed that there wasn’t really much to see.

Still doing a lot of creek visits. She really enjoys poking at the water with a ‘fishing stick’. With the nice weather, there are a lot of people playing on the water. So far, she isn’t interested in creek swimming or tubing. However, she is excited to start swim lessons next week. Before transplant, she got very tired in the pool and didn’t make much progress. I’m thinking that the lessons are going to be a different experience for her. Hiking has been different – she hiked on her own 2 feet all the way up South Table Mountain to Castle Rock. It took a long time, but she made it. At least we didn’t run into any of the rattlesnakes that other hikers encountered.