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
Zayne is approximately 6 weeks post transplant and it still doing fantastic. We went on a 3 mile walk a few days ago, and Zayne is still frustrated by sternum restrictions. She hasn’t had any chest pain in a while. We have started scar therapy by using silicon strips.
We’ve gone for walks along the creek, walks at the Denver Zoo, and visited a working ranch. I was running after Zayne with hand sanitizer after each animal that she touched. She was supposed to participate in a wheel barrow race and muck the mini-horse stalls, but she between sternum restrictions and having her immune system wiped out, we just walked around. The
Filed under 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 has been released. HEADING HOME!!!
Filed under Transplant
Zayne had her final IVIG infusion (4 hours long), and we will be going home on Saturday, if her kidney levels are reasonable. Her incision still hurts quite a bit, but the pain is helped with oxycodone. We walked to the hospital pharmacy and picked up another couple of medications. We are going home with 10 prescriptions. With time, most of them should go away. If her heart loosens up and she can stop using blood pressure medication, she should be down to only 3 ongoing prescriptions after 6 months. The risk of rejection is highest right after transplant, but this doesn’t mean rejection is out of the picture. Zayne went into rejection with her last heart after nearly 5 years.
I’ve been required to have discharge appointments with various departments. I think there is only one left that will occur just before we are let loose. I hope we can go home on Saturday! We’ll have 2 transplant clinic appointments each week for the first 3 months that include early morning blood draws. Since Zayne still has a little bit of fluid around her lungs, she will also continue to have X-rays.
Zayne receiving her Bag of Fun
An order of oatmeal had a piece of plastic wrap in it – discovered while I was eating and wondered what I was chewing on. This was after eating eggs that had a surprise and unwelcome taste of bacon for one bite. I showed the nurses, and soon after received a new oatmeal order with a note “please make sure there’s no plastic in the oatmeal”. Zayne stopped eating most hospital food a while ago and threw away the new bowl of oatmeal.
Zayne has impressed the medical staff with how quickly she has recovered and progressed. Her heart transplant and following open heart surgeries all took place last week. No one thought she would be discharged the week after her complications following the transplant surgery.
Zayne needs to rebuild muscle and get back to her previous weight. She will be on sternum restrictions for a while (no bikes, horses, scooter, etc). But, we go places that we couldn’t go to before since we aren’t required to be available 24×7 on the phone.
Filed under Transplant
Yesterday consisted of 3 different walks around the CPCU. We had to drag around an IV pole since Zayne needed 3 infusions: Potassium, Magnesium, and intravenous immunoglobulin (IVIG). IVIG is pooled antibodies from other people that helps to rebuild her immune system.
Today, an IV was removed, and Zayne has a single PICC line left. She was free all day and had a good walk about. Some time in the teen room to play Mario Kart where her support team brought a wheel chair. Zayne felt great, and I (alone without medical staff) took her down a flight of stairs and outside to walk on terra firma.
Later, Zayne walked up to the 11th floor from the 9th floor, and then down 11 flights to the 1st floor. Her heart feels great but her skinny legs are tired.
Tomorrow Zayne will have an MRI of her brain to check function after being on ECMO. She also has an appointment to pick up her Bag of Fun – she is looking forward to seeing what she gets. When I spoke with the coordinator last week, I didn’t think she would be able to walk to the office to pick up the bag herself. Zayne has come a really long way in a week. It was just last week where she had a heart transplant followed by emergency surgery to install ECMO, another open heart surgery last Tuesday to remove the ECMO cannulas, and her breathing tube was removed last Wednesday.
Filed under Transplant
