Category Archives: Rejection

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. 

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.

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

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].

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.

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.

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.

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).

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.

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.

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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.