Zayne enjoyed Halloween and her 12th Birthday, but did not enjoy a heart catherization.
Halloween Horse Show
Halloweening
Zayne was a pirate for Halloween (yes, the horse is wearing the same hat that she wore for Halloween). She turned 12 on October 29th and had a birthday party at a trampoline park.
Normal artery section (above) vs stenosis (below)
The heart cath was rough on Zayne, but she had a good outcome. There was a lot more pain after this cath than she had ever had before. This one was a little different because they had a team from the adult hospital as well as the Children’s Hospital team (and some observers to check out the new equipment), plus she had a high dose of blood thinner and was under for double the usual time. The hospital acquired equipment to enable high resolution measurements and images for Zayne. I was glad that she didn’t need to go to the adult hospital.
She had a high dose of blood thinner which caused bleeding in her throat from the breathing tube. Then someone ‘helped’ by siphoning out blood in her mouth which caused a large, bleeding bruise under her tongue. Zayne woke up with pain in her throat, pain under her tongue, a bruised lip, pain in arm and body achiness from a vaccine, pain in hand from 4 sticks to get a single IV going, pain from the cath site (where wires were inserted into vein and artery), and the discomfort of needing to lay flat for 4 hours. We did NOT need to spend the night in the hospital, but Zayne spent 2 days recovering at home. She is feeling much better, today.
The artery image shows a normal section vs the section that is narrowing. The perfect orange circle is the cath wire. The flow through the narrowed portion isn’t as bad as they thought, so Zayne does not need a stent at this time. Also, Zayne has had less heart pain the past few months, and that is probably due to the pressures in her heart going down to more normal levels. There is some minor cellular rejection; kids often go between 0 and 1R after rejection (which Zayne had in April 2020). So far, the plan is to repeat this type of heart cath in 6 months. The transplant team will meet next week to discuss her case, so plans may change.
Last night there was difficulty breathing and chest pain. This morning it felt like someone was sitting on Zayne’s chest. We tried for a clinic appointment, but were told to go to the ER.
All tests (blood, x-ray, echo, ekg) are good. The doc thought it may be something related to her esophagus. After taking a med that coats the esophagus, Zayne feels normal. Unfortunately, there was the trauma of having another COVID test and a painful IV.
She probably had a pill stuck that dissolved in her esophagus and caused irritation. Her doc was correct
We are very happy that we don’t need to spend the night, and that her heart is still recovering and not getting worse.
Only made it a few bars, but maybe more next time.
Labs came back, and there isn’t bad news, so that is gg% Levels are the same or slightly better. Pathology showed a small amount of Antibody-Mediated Rejection, but the Donor specific antibodies are down. We are will take any bit of good news. The recovery is slow and could take 1 year. We don’t know why BNP went up, but trends are followed along with clinical assessment and other tests.
A close look
We will continue to go twice each week to the hospital, instead of dropping to once each week. However, we may be able to have venous blood draws every other week. I sure hope so, because continued pain is not good for Zayne.
Finally, we are home. It seems like we were gone a month, but it is actually 12 days.
The 13 meds she is taking takes careful thought. One med should only be taken 1 hours before or 2 hours after a meal. Another cannot be taken within 2 hours of another med, and must be taken with food. In the hospital, we were sometimes up at 10 pm to take meds, but I don’t want that to be the case at home.
Zayne has a long way to go to get better. Between medication, procedures, time, and her strength, she should be able to recover.
Today started out with a bang – good mood, ‘Mommy PT’, ate a big breakfast. Then came the plasma exchange. The procedure went well, and Zayne seemed a lot less nervous at the 3rd treatment.
Blood going out the left arm, centrifuged, plasma removed and replaced with albumin, and goes back into her body via right arm
After eating lunch, we went for another round of ‘Mommy PT’, but she wasn’t up for much, so we just walked and did a little stretching. Back in the room, Zayne complained of a head ache, dizzy, feeling poorly, and her heart rate went back up into the high 140s. Also, has some hand tremors which make artwork difficult (this may be due to any of the many meds that are coursing through her little body . Zayne ended up back in bed and not doing much for the rest of the day. No fever, but Zayne was not feeling so good.
Watched movies and played video games most of the day. Yes, there is a box of real tissues – the hospital tissues are like sandpaper and are not recommended.
Besides Zayne not feeling well, the heart echo revealed some improvement on the right side of her heart, but no improvement on the left side. So, we had a backward slide, today. I kept bugging the nurse to figure out what was going on, because I was worried about her high heart rate. The doc thought she may be dehydrated from the plasmaphersis, so she got hooked up to IV fluids and encouraged to drink liquids. It is so confusing to Zayne – one day there are severe fluid restrictions, and another day she is getting an IV for fluids. It seems they overshot her fluid removal. No Lasix, tonight.
By the time bedtime rolled around, she was back to herself and wanted to do some ‘Mommy PT’. We couldn’t because it was late and she had to take her meds and receive her last Rabbit treatment (for this cycle?). Hopefully, Tuesday will be a better day.
The CH50 results have not come in, I’ll ask at evening rounds, but the nurse didn’t have results. This is the test that will direct if there is another Eculizumab treatment.
Her milrinone dose was lowered a little bit. I’ll see what is said at rounds, tomorrow. It is difficult to know how she is reacting to the lowered dose, when she spent the day dehydrated.
Zayne is feeling good and getting stronger. We did more ‘Mommy PT’ around the ICU, and she is able to do more and more. She was even able to hop like the bunny that is getting infused into her (she couldn’t jump at all 2 days ago). Zayne was amazed when I showed her the medicine name that shows up on the screen that is regulating her “Rabbit” infusion
Plasma from rabbits into Zayne
We’ve walked round and round the ICU playing games to move different muscle groups. There are 9 rooms occupied out of 16. We are back to having a private nurse during the day and, now, at night; this is due to our neighbor moving out (Zayne doesn’t need a dedicated nurse). We’ll see if occupancy goes up on the weekdays. The dedicated nurse is nice for a 3rd hand at cards.
We spent some time, on the patio, listening to children playing. Zayne is asking me “Why did this happen to me?”, “Why can’t I be normal?”, “Why was I born with a bad heart?”, “I just want to be normal”, “When can I go home?”, and “I miss Scotty” [our cat].
The Jail Patio. I’m sure we are breaking rules for standing on the bench. I get reprimanded every day for something – going for a stroll without asking permission, unplugging and not plugging back in, taking a picture of med pump screen, going into an empty room to watch a storm, silencing an alarm (they are so annoying), ….
Looking back on pictures, I can see that she didn’t smile at all when she didn’t feel well at the beginning of her ICU stay, but now she awakens with a smile on her face.
Zayne expressed worry that Monday’s tests will show that she is not getting better. The nurse assured her that she is certainly better, because he was watching us doing ‘Mommy PT’ and doing ICU laps.
Monday’s Plan Echo in the morning will show if her heart is better. If the ejection fraction is increased, it will mean her heart is improving. We have a good indication that it is improving because her liver is no longer in the middle of her abdomen (it was pushed there by a backup of blood from her heart not doing its job).
Another Plasmapherisis where her plasma is removed along with the bad antibodies.
A CH50 test to see if she needs another Eculizumab treatment. What is CH50? Well since you asked, one CH50 unit is defined as the volume or dilution of serum that lyses 50% of erythrocytes in the reaction mixture. I hope that clears it up. I told Zayne to think of the Eculizumab treatment as a shield from the antibody attackers. Apparently, something is being stopped from punching a hole in something; if the hole can’t be punched through, then we are good.
I think Monday night may be the last ATG (Rabbit) treatment for the initial round. Rabbit treatment reduces T-cells. I tell Zayne that the T-cells are white blood cell soldiers that try to attack her heart with their swords. Other white blood cell soldiers, the neutrophil brigade, are still there to fight off bacteria.
Most likely, Zayne’s dose of milrinone will be reduced. When she is off milrinone, then she is eligible to be moved to the Cardiac Care Unit (CCU)!
Zayne woke up happy and feeling well. It seems that the IVIG treatment did not affect (did I use that correctly?) her morning. She had her morning pizza and had to take all of her pills. It seems that applesauce is the method of choice, but it still takes some time.
Today, we received 10 e-cards all at once. Zayne enjoyed reading all of them.
Had more than 1/2 for the first time. Appetite is improving.
Can we get rid of the sharp edges? “I don’t want to take the Nystatin” Zayne says it tastes like trash, and she can’t drink water for 5 minutes. This prevents yeast from growing in her mouth and stomach
PT Time I thought it was time to get Zayne’s body moving, again. Since we lack an ICU playground, I made due with the designs on the floor: Walking on the tight rope, jumping over rivers (jumps are a little lacking right now), stepping on rocks (the black spots on the ladybug in the floor), and other things that I would make up. We did arm stretches, lunges, squats, twists, and other stretches – not too much, because her body is weak and tight. Arms can’t be lifted above head, leg can not lift up (no Taekwondo kicks), but it is a start. We did a few laps around the empty ICU, so I try to make it interesting (including sneaking into empty rooms to check out the different views).
When we came in for the hourly vitals, her blood pressure was way too high – back to bed to get blood pressure down. It seemed that every time we got up to do things, the blood pressure was too high. Apparently, the nurse realized that it may not have been much of an issue, because the systolic pressure was lower when Zayne is prone rather than standing. Hopefully, this isn’t a real issue.
Taking a reading breakIt was too cold outside, so we played cards inside. Mommy won her first game of Skipbo.Not a sore loserSometimes, just being surrounded by kitties is enough
Plan Tonight will be another “Rabbit”, so a slow medical day. I notice that not much happens in the hospital over the weekend. After tonight, there are 2 more “Rabbit” infusions (ATG).
Test on Monday to check levels for Eculizumab. Since I can’t see the actual results, I don’t know the units, but she was 56 prior to treatment and 0.5 after treatment.
Plasmapherisis on Monday, Wednesday, and Friday
Echo is on Monday or Tuesday – this will measure flow rates and we’ll see if her ticker is showing more signs of improvement.
Zayne began taking Lipitor, which will continue to be a daily medicine for her. Usually, teenagers and adults take this med for heart transplants, but the doc wanted to give it a try on Zayne.
Signs that Zayne is getting better:
Venous oxygen is at 63.4% which is up from 49.8% when she arrived. It was 76.7 % a few days after transplant
X-ray result: Decreased right pleural effusion, now small. Yes, she has been getting a daily X-ray, but now that the effusion is smaller we will skip Sunday. No more lead shield protection for Zayne’s lower torso – latest research shows that rays are bouncing around, so better to let them escape.
No more private nurse – As of last night, Zayne has to share her nurse with a newborn baby. We’ll miss having a 3rd hand at Uno and Skipbo.
Pills Zayne couldn’t take it anymore, so she switched to pills. It takes a while to get them down with applesauce, because there are so many meds, and some of the pills need to be cut up to smaller pieces. This is an historic day! She wanted to keep her old friend, Tacrolimus, as a liquid. Zayne asked the nurse 3 times if he was sure it was Tacro – the nurse removed the label, but had to find it to show it to Zayne.
Not all the pills p it takes a while to get these all down
PICC Line and Breakfast I was informed by my nurse sister, Stacy, that I was writing Peripherally Inserted Central Catheter (PICC) incorrectly. Woe is me – I never saw the name in writing. I thought I was in on the lingo because I could say PICC. Zayne was terrified when one of her PICC lines couldn’t be prepared for Plasmapherisis – she thought they would need to insert a new line. We did have to put on masks in our room to change the defective cap (it all worked fine).
Masked up for a change (she is a rebel and will not wear a mask outside the room)
Today, was pizza for breakfast. As usual, eyes bigger than her stomach, but she tried.
Because of yesterday’s pleural effusion, Zayne’s water intake was severely limited. It was a little ridiculous, because they were counting her IV meds as part of her intake, so she was only allowed 10 ounces of water all day. Her little parched throat wanted more, so when the nurse was away, a little sip from my water bottle sometimes slipped into her mouth. She couldn’t have any juice or protein shake, because she had reached her ridiculously low limit. It was exciting to learn that she gained a few ounces from the plasmapherisis. When the plasma was replaced, they put back less. Zayne’s happiness was quickly dashed when I poured out the allotted liquid gold and she said “that is all?” By late afternoon, my guilt and worry about sneaking her a few sips (did I screw up her treatment?) was erased when they magically allocated 30 additional ounces of liquid.
Pizza breakfast and video chat Note: We have a beautiful rooftop view
Question to Zayne from Nurse:Do you know what we are going to do? Zayne: Yes, you are going to remove my plasma and take out the pesticides.
Visits We had visitors! But, it isn’t the same since COVID came into our vocabulary. Two different therapy dogs, and watching a crazy, dancing Aunt Vanessa from the Cardiac ICU balcony. Zayne is not allowed to use sunscreen, so we covered her as best we could and restricted the time in the sun.
She couldn’t see Aunt Vanessa
Waving to Aunt Vanessa
Who is dancing on the sidewalk?
Taking in the air, in the shade
AM Therapy Dog
PM Therapy Dog
Health Update For a changed, there is more positive news. – Heart rate is slowly coming down. I just looked up and saw her sleeping heart rate at 116 beats per minute (it is the first time I have seen anything under 120s). The first night in ICU, I was looking at 130s bpm for sleeping. Awake time started at 150 bpm, and today I was looking at 130s bpm. – Right side pleural effusion is diminishing – The ECU seems to have worked because some number (total hemolytic complement [CH50] ) was low, and that is good. She does not need another ECU infusion this week – Lost 1 pound since yesterday. Seems strange to be rooting for Zayne to loose weight, when we always want her to gain. She still wants to get her present from Grancie for reaching 60 pounds. I’m mean and told her rejection water weight does not count. – First poop in 4 days – Oxygen is no longer needed at night
Plan Zayne will get IVIG, tonight, after the 4 hour Rabbit infusion is finished. She hasn’t had IVIG during rejection, so not sure how she will be in the morning. I love that docs listened to me and give her the nasty infusions while she sleeps – much better for everyone. This allows Zayne to get out of her bed and move around.
Zayne is going to start Lipitor, but not for high cholesterol. Adult transplant patients take Lipitor, and teenagers are not using it. Zayne is a little young, but studies show that it may be helpful. Innovative procedures are being used to get Zayne better.
There are treatment plans into next week, so I guess we will be in room 3203 at Children’s Hospital into next week. I have no clue when we will get out of the ICU, or when we can leave the hospital grounds. Our departure will depend on how quickly Zayne improves. At some point, we will probably go home with some of her lines in place, and come back to the hospital for out-patient infusions. Poor Zayne asks me every day “when can we go home?”
Update from 12:30 am Rounds: If Zayne continues to improve, we can probably move to the step-down unit early next week. It will be nice to not have a nurse (and everyone that walks by) watch me sleep.
Zayne is holding a 3-D image of her old, sick heart. I hope the heart in her chest doesn’t become another old, sick heart.
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
Behind Bars
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.
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.
Not interested in anything
While waiting for the biopsy results, we enticed Zayne to go for a walk to get a toy from the treasure box.
Treasure Box
Getting ready to walk
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.
