Zayne's Heart

I had a 5am apple request, then a 7am announcement “I’m hungry”. Zayne downed her first protein shake since April 26. During this mornings ECHO (ultrasound of her heart), she turned on the TV to watch a cartoon. This may not sound like much, but she has just been blankly staring at walls and equipment. It is a good start to the day.

Zayne had a couple of questions and comments about her new heart: 1)Will I always see my heart beating in my chest, 2) I can feel my heart beating in my fingers and toes. I’ve never felt this before. She wrote down this questions to ask the transplant cardiologist during rounds. We never know when rounds will happen. Anytime between 8 and 1, but usually around mid-morning.

Unfortunately, the night nurse seemed to have a heavy hand when stripping the chest tubes (squeezing the tubes to push fluid into the floor receptacles). Zayne has a lot of pain at the entry point and new pain where she feels the tube inside of her: I feel the tube in my lung.
She is telling me that she will ask for morphine but she just received her Oxycodone, so that may work.

I’ll post updates later today.

Zayne is free from support lines/wires/tubes. Both chest drains came out along with the pacemaker wires. She is still pretty sore on the side, but she said “I can breath” after the right drain was removed. Zayne said every movement and every breath hurt with that right drain. Her body should absorb any remaining fluids. She still has some air and fluid in the pleural cavity – these are being closely monitored. She is on room air (not using the oxygen nasal canula anymore) and has no support other than medications. As soon as the drains were removed, we moved to the Cardiac Progressive Care Unit (CPCU). These rooms are more modern – larger bed for me, a bathroom, more counter space, …. and a better view from the 9th floor.

Zayne hasn’t been sleeping well, and it all seemed to catch up to her. Instead of going for a walk, she slept for hours. I asked the nurses to have Zayne step on the scale again and grab another scale to make sure I was seeing her weight correctly. She has lost 10% of her body weight. I guess that happens when you don’t eat for 1 week. Her stomach has shrunk, so she is stuck with being hungry but not able to put the food in.

She will have blood work every day and the therapies: respiratory, occupational, and physical. Speech (for eating) made their last appearance today and will not come back. Other staff that just show up are child life, psychologist, and social workers. Multiple doctors stop by, along with the charge nurse, and her assigned nurse and care assistant. Everyone knocks, but they just come into the room.

Zayne is slowly getting more mobile each day. Today was her first walk with 4 people escorting her. All of her IV medications are out, but she still has the two chest drain tubes (both are still painful). She is eating a little, but doesn’t always feel well and needs to get used to eating after a week of no food. Once her drains are out, she will be in less pain and able to move around a lot better.

I was wearing my hospital slippers and my foot felt wet – for the first time in many years, I had pee on me that soaked through my slipper and sock (due to a little commode mishap). I’ll be doing laundry tomorrow.

There is a chance that drain tubes (at least one) may be removed along with the pacemaker wires. The newer right drain is still producing, so we’ll see if it can be removed. Zayne gets an X-ray every day between 4:30 to 5:00 am. I’m sleeping when this happens, so I am not protected. In addition to the X-ray, there will be more bloodwork. If the tubes do get removed, we will probably move from the CICU to the CPCU on the 9th floor. The digs are a little more comfortable, and I look forward to have a private bathroom with shower.

Not much happened today – my big excitement was taking a shower and doing laundry at the family resource center. Each day Zayne is able to do more and have more medical devices removed. Unfortunately, yesterday’s new drain is still very painful so moving around is difficult. She was ready to go for a short walk, but the nurse was not comfortable with her mess of tangled lines and the extra respiratory device that would need to be hooked up to a portable cylinder. She should be able to go for a short walk tomorrow since she has switched to a regular canular, had her arterial line removed, and will have her neck central line removed in an hour (yes, late at night). Meds are being switched from IV to oral.

Zayne ate a little more and kept everything down. Hopefully, she will eat more each day. She spent a lot of the day just sitting – not wanting to use an iPad or watch TV. I did get an iPad in front of her for a bit, but put it on a stand so she would have to keep her head up and raise her arms to touch the screen (I’m doing my own therapy).

Lots of line and tubes, and the larger nasal cannula (which is now gone). Zayne’s side hurts where she has the new chest drain, and her back is hurting from all the sitting. Unbelievably, her chest doesn’t hurt much.

I missed rounds in the morning because they didn’t wake me (both Zayne and I slept better in this quieter section of the CICU). It seems that I need to advocate every day:

• I did get to speak to the transplant cardiologist and CICU doc and was able to get them to turn on the ability to order food (I had asked multiple nurses but they weren’t able to figure it out or just didn’t bother).
• I asked what time respiratory therapy was scheduled, but the nurse told me it was cancelled. I told the nurse it was a mistake and had her contact the doc. It was an error and Zayne has started daily respiratory therapy.
• I requested meds be changed from liquid to pills. I have no idea why she was receiving liquids when she can swallow more pills than I can. Tonight she had pills and taking meds became easier.
• I noticed that Zayne’s neck central line dressing had come off. I was shocked because I had taken the central line classes last week and they told me to never let this happen. If I noticed that the dressing may be getting too loose, I was instructed to take Zayne to the ER. It is a big deal to change the dressing – sterile gloves are to be used (not just the nitrile gloves) and everyone in the room is supposed to wear masks. A central line infection is serious since the line goes to her heart which then pumps blood to the rest of her body.
• I think there was something else, but it all starts to blur together.

Weekends are usually quiet at the hospital but plans include:
– Physical therapy (includes a short walk)
– Occupational therapy
– Respiratory therapy

She is still producing from the new drain and the medial drain, so I don’t know when they will come out. The pacemaker wires are no longer needed – the new heart is working! The wires will need to come out. I was hoping the wires and the medial drain would come out at the same time. I’ll have to ask during tomorrow’s rounds.

Today’s surgery was a little step back, but will just be a blip in her recovery. Over 1.5 liters of fluid were removed from her right lung and a new smaller drain was installed in her side. Two of the larger drains were removed (she has one large drain left). The pumps were left in place, so she is draining to the floor storage device where output can be measured. Air was accidently introduced into her lung during the surgery. Hopefully, this pneumothorax will be sucked out with the chest drain.

This is not Zayne’s device, but it shows where the chest tubes are going. She is down to two from three.

The new drain on her right side is extremely painful. Zayne told me it is more painful than the heart transplant. She looked at me and asked “Why did you let them do this to me?”

Since the Foley is out, she has gotten out of bed numerous times through the day. It takes at least two people to get her out of bed without ripping out something important (like the IV that was ripped out last night). There are sternum restrictions, so Zayne cannot use her arms to push or pull herself. Also, she cannot be moved with pushing or pulling her arms, or lifting her under her arms. It was much easier when she was 4 because I could easily lift her by myself. I find myself doing more and more nursing duties, so I am pretty busy with her most of the day. I advocate for her and attend all “rounds”. Today, I got her additional pain medication, anti-itch meds, and stopped a 9 pm dose of Lasix (she is asleep and I don’t want her to have to get out of bed), switched a liquid med to a pill, etc.

Zayne was able to eat a little today without getting sick. I told the surgeon that she made the stomach pain go away with the new chest tube pain. Zayne is doing so well that we got bumped out of the critical care room to a slower part of the Cardiac ICU. The new room could not fit 15 medical staff, but I hope those days are behind us.

In addition to eating yogurt, Zayne tasted some chocolate ice cream. There is a skin tear below her left eye where an adhesive was removed. I place Aquaphor on the tear.

I was shaken awake by the transplant surgeon to let me know the 4 am Xray showed more fluid around Zayne’s right lung, and was booted out of the room. Zayne needed a procedure to install a pig’s tail to drain the fluid. The surgeon removed over 1 Liter of fluid – Zayne would have never been able to clear that much on her own.

Since the left drain tube has not been draining too much blood, it was removed while Zayne was under sedation. The two other drains were converted to bulbs that can be hung from her gown. However, they may need to be changed back to the pump version.

During the night, a Patient-Controlled Analgesia (PCA) Pump was installed. Now, Zayne can give herself a shot of fentanyl when she feels the need. For some reason, she has been toughing it out and letting the pain get ahead of her. It was so bad last night that she got a dose of morphine so the IV tech could work on her new IV. I think Zayne doesn’t want to ask for pain meds because she has been so nauseous. Hopefully, a combination of Scopolamine and Zofran will help.

I hope I can get some nutrition in her. Being sedated will not help her nausea situation. There will be another late PM post.

Zayne is off the nitric gases and is just having supplemental oxygen using a regular nasal cannular. So far, she has not been able to keep any food, water or medicine in her stomach. And, she is about to be re-dosed after 11pm with a medication she threw up an hour ago. Maybe an hour will make a difference. Most of the day has consisted of stomach and chest pain. Finally, she was given her first dose of morphine and that did the trick (she didn’t throw up from it and it stopped the pain).

The equipment is slowly leaving the room. Zayne is most comfortable when sleeping.

A lot of IV issues today: one leaked and had to be removed, another could no longer be used, and a 3rd was completely pulled out (probably when the nurses were moving her on and off the bed). A new IV was placed, so we are minus two IVs.

I’m hoping Zayne can put some food into her stomach that stays. She last ate a full meal a week ago Friday. She is getting stronger each day since she was able to sit up without support and could stand on her own. PT is her new nemesis – it doesn’t help that they came to bug her right after a vomit session. Zayne was saying “NO!” and “Go Away” and “I don’t want to”, so she is being Zayne.

Tomorrow (Friday’s plan):

• Remove one of the 3 chest tubes.
• Replace the two remaining chest tubes’ floor repositories with bulbs that can be pinned to her gown. This means she will be able to get out of bed without a team of people.
• Remove the Foley.
• Daily X-ray (from the comfort of her bed)
• Occupational Therapy (OT)
• Physical Therapy (PT)
• Speech (for eating and swallowing)
• Try to eat and drink, and keep contents in stomach

Finally, a great day – Zayne is still there and doing her thing. She put up such a fuss last night that the respiratory specialist decided to take out her breathing tube. The first word that she mouthed was “food”. I saw the very first smile on her face when I told her she had her heart transplant.

I finally got to hear her voice in the morning (her vocal chords are still recovering). She wanted water and wanted it badly, but the nurse said “no” because she hadn’t been cleared by speech. After more badgering, Zayne was presented with ice cubes to replace her request for water. After a while, some of the cubes melted and Zayne got the cup to her mouth (she is very weak and shaky) and drank the water. I just watched, and the nurse was pretty upset because she wasn’t supposed to have water.

Zayne is cleared for soft food, but pain is keeping her from eating much. She got out of bed to stand on a scale – it took 3 people but who’s counting. After getting back in bed, Zayne slept for hours.

Tomorrow promises to be tougher. Not only will she get out of bed, but will have to walk to a chair and sit in it.

Hopefully. she will continue to make progress every day. The heart still needs some improvements, but I was concentrating on all of today’s accomplishments.

The neuropsych nerds came to visit, but Zayne fully checked out. She may have an MRI at some point, but only if she can lay still without needing sedatives (says me).

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Today was a good day – Zayne went into her 3rd open heart surgery in 3 days.

• The ECMO cannulas were removed from her heart,
• Pulmonary artery did not need to be repaired
• Chest has been closed

The transplant surgeon built the operating hat and gown for a stuffy (she had time while waiting for the OR to get setup prior to transplant). There are even a couple of tasteful blood spots (not seen in image).

Zayne is heavily sedated from today’s surgery. There won’t be any pictures of her until she is fully awake. Today, the docs started to raise her body temperature. Since she is no longer on ECMO where her oxygenated blood was cooled before going back to her body, her body temperature should go back to normal.

What is next? Her heart and body have had a big shock due to transplant and the hemorrhage. The resulting surgery and ECMO cannula placement has added additional trauma. As her body heals, the new heart will begin to become stronger. We’ll need to see if the new heart will support her when she wakes up. Right now it is working fine with the help of medications. While I was writing this, she moved her head and opened her eyes. I tried to comfort her, but don’t think she understands. I asked if she could see me, and she nodded “no”.

It may take a while for the new heart to properly pace itself. Right now a pacemaker is setting the pace. Zayne is still intubated and will probably stay on the vent for a few days. We go day-by-day and celebrate each milestone.

***** Breathing Tube is OUT *****
taken out at 1am on May Day

It seems like it has been weeks since the transplant, but it was only yesterday. Sunday, April 28th 2024 was a really big day. The surgery started on Saturday, April 29, but most of the surgery took place on Sunday. In addition to having a transplant, there was a setback in the afternoon that involved blood loss and being placed on extracorporeal membrane oxygenation (ECMO) which is type of heart-lung bypass machine. ECMO does the work of the heart and lungs so the organs can rest. The machine takes blood from the heart, oxygenates, and then places back in the aorta.

It seems that after one day, Zayne’s new heart can push enough blood on its own, so she is scheduled for an OR appt at 7:30 am (in hospital speak, this probably means 9:30 am). After ECMO the vent should be gone within 2 or 3 days.

There isn’t much change to Zayne and if she was awake, she would tell me that I’m not allowed to post any more pictures of her. Instead, here is a picture of my private ER nurse – my sister Stacy, who is an instrumental part of this journey.

We (me and my sister Stacy) were able to come into Zayne’s cardiac ICU room. There were still a team of people working on her. The new heart still needs to recover from surgery and adapt to its new home. Zayne’s vascular system needs to recover from surgery and adjust to the new heart.

Zayne is still being sedated, is on a ventilator, is being given blood and lots of other medications. I count 10 pumps, but Stacy tells me not to count them. 

There are 3 drainage tubes and a pacemaker. She has two dedicated nurses that have not stopped working on her since we showed up an hour ago. Other specialists and docs come into the room. 

This will be a long road to recovery.