It has been a while since the last post. No news is good news. Zayne recovery has been going really well. She is so much stronger and her heart is keeping her active and running around. Besides colds that last a while (she still has higher immunosuppression levels).
Milestones since her two month heart anniversary:
Filed under Post-Transplant
Zayne finally got permission to go to an outdoor pool. The day was freezing and I was wearing a fleece jacket and sitting out of the rain. The lifeguards were wearing hoodies, and Zayne was the only kid in the pool. We’ll go back on a warmer day (during the week) as soon as she is allowed. Yesterday, Zayne had an urgent heart cath to check for possible rejection. She had dropped a bunch of meds (5 of them), but we are adding two back. She will be on a very low dose steroid until she can start on a new (new to Zayne) immunosuppression drug in two months. Since the dose is low, she doesn’t need the gross mouth wash to prevent thrush, but she will take Pepcid to make sure she doesn’t get stomach upset. Depending on results that will come in next week, her next cath will be in 1 or 2 months.
Zayne looking smug: Right side heart cath (vein entry) are pretty quick these days. For the first time, Zayne opted out of pre-medicating, so she was fully awake until the laughing gas knocked her out. The cath is going through her neck which avoids the hated two hours of laying flat on her back. Since she wasn’t intubated and had less anesthesia, recovery was much quicker (Friday’s heart cath was only 7.5 hrs out of the day).
HopeKids sent Zayne to Casa Bonita to celebrate her new heart. She was thrilled and had a fantastic time watching the cliff divers, playing in the arcade, and enjoying all the restaurant has to offer. Masks were worn when there were crowds.
Riley, the cat, who can’t get a treat out of the cat treat container, turned on the bedroom touch lamp a few times around 4 am. I finally killed the flying insect that had him interested and he finally left the light alone. I could have unplugged the light, but that was more effort than just touching the lamp.
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Filed under Post-Transplant
Five weeks ago, I would not have expected to be walking about Golden. Zayne has two modes: fast and stopped. We walked up to Mother Cabrini’s Shrine in 11 minutes. A few months ago, it took her an hour to get to the top. She is starting to leave me in the dust, except that she is getting stitches that is forcing her to rest. Against my advice, she drank from the spring.
Tomorrow will be the start of the real cardiac rehab, but I’m not allowed to watch. Last week was evaluation. It is a good thing we are walking a bunch. Zayne is very frustrated, because she wants to climb things, swim, ride her scooter, and ride her new bike (which still needs to be purchased). She has outgrown her last bike that I purchased during her rejection episode 4 yrs ago. We can’t go shopping since she isn’t allowed to ride, yet.
We checked out the baby buffalo (and the large adults) at Denver’s Buffalo Herd. No one was close to the fence, but the calves are pretty cute. We went to a stocked private pond for some trout fishing. Zayne pulled in one, and I got two of them. I didn’t feel the need to hold the trout (I didn’t have my nitrile gloves with me), so I let the guide release the fish. Now, I recall why I used to put my rod down and run around to explore. Sometimes, I was lucky and came back to a fish on the line. I just don’t have the patience, and neither does Zayne.
Filed under Post-Transplant
We are few days late for the one month heartiversary, but close enough. Zayne is doing amazing and slowly putting on weight. She wanted to bake a cake to commemorate this occasion – she made the cake all by herself (following the directions on the box).
Cath results are good – her pressures are great. When I saw the pathology results come back as a 1R (mild acute cellular rejection), my heart sank. But it isn’t a concern since jumping between 0R and 1R is common (you can’t get rid of rejection 100%). We are still waiting for her AlloSure results. This special blood test will quantify the amount of donor heart DNA floating around in her blood stream. Donor DNA in blood is bad. We don’t expect to have high amounts, but it will be good to get a baseline. In the future, we may be able to use AlloSure to check on possible rejection instead of having a cath with a biopsy.
Breaking sternum restriction rules
Big Mac to gain weight.
First short hike
Filed under Post-Transplant
Zayne had her first right side cath on her new heart. The hospital called Tuesday afternoon to change the procedure from Friday to Wednesday. It was a really long day at the hospital, since the cath was scheduled for 1:30 pm, but we had to be at the hospital by 7:30 am for blood work. For the first time as out-patient, the cath was inserted into her neck – this means no mandatory 2-hr down time. We were able to leave much more quickly and Zayne has less restrictions (not that it matters too much since she is still on sternum restrictions). The doc said her new heart looks amazing and the pressures look like a normal heart. It is the first time in 4 hears that I received positive news from a heart cath. The transplant team was not expecting such good results just 3 weeks from the 10 hour surgery and the emergency that followed.
We still have to wait for the biopsy results to see if she is in rejection. Zayne has no signs of rejection, so if she is in rejection, it will be easier to treat. Stay tuned for the biopsy results. We’ll be going for blood work on Friday – if her immunosuppression levels look good then she can drop 3 meds.
Filed under Post-Transplant
It is good to be home. We still haven’t unpacked everything from the hospital stay, because we have to pack for another possible stay. Zayne has a right side heart cath on Friday, May 24. Right side (vein) is safer than going to the left side (artery). The primary reason for this cath is to check for rejection by looking at heart biopsy samples under a microscope. Flows and pressure will be measures and calculated.
Once Zayne’s immunosuppression level for Tacrolimus have stabilized, she will be able to remove 3 meds from her regiment. These are the meds she takes every morning. Some meds are prescribed for up to 6 months post Transplant, and others will drop off as pain and heart function improve.
Filed under Post-Transplant
Zayne turned 10 years old on October 29th – double digits! This year, we didn’t make a cake or cupcakes, because we were too full from her Indian food birthday dinner (curbside pickup). We’ll probably still bake something to celebrate, but it may be 10 yrs and 2 weeks birthday.
On Saturday, Zayne had to get her 4th COVID test in preparation for her heart catherization on Monday, Nov 2. She was hysterical, and I was surprised that they didn’t have other people at the testing drive through that would help deal with her fears. It took 3 swabs and over 20 minutes and promises for a gift until she allowed the test – this one didn’t go as deep as the previous tests, so not too bad.
There will be another post this week when we get the results of her cath.
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Filed under Post-Transplant, Rejection
A few days ago, I was asked “Does the tooth fairy really exists?” I was surprised, because I didn’t think that she really believed in the tooth fairy. I didn’t want to lie or to dash another bit of her childhood, so I told her that people imagine that the tooth fairy exists. Zayne told me that she thinks that I leave her the money, and that the tooth fairy writes her the notes and certificates.
Next week is IVIG #4 out of 6. We’ll have a full day at the hospital. Last week, we had a scare, and I thought Zayne might get admitted. The echo tech raised concerns at her echo which resulted in an extra round of blood work and spending a few more hours in the hospital.
Lasix was added back into the med regime to see if it could lead to any improvements. Zayne’s heart has not really improved since we were discharged from the hosptial. One of her immune meds is measuring too low in her body, so we had to add another pill to increase the dosage by .25 mg.
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Filed under Post-Transplant, Rejection
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
Filed under Post-Transplant
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)
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