Ryders Tetralogy of Fallot Surgery

Cardiology pre-check up

Tuesday March 16th 2010

Started with usual weight (7.72kg), height (72cm) and Oxygen Saturation Levels (93%).
Went to see nurse who organises trip to Melbourne. Went through flights, accommodation, cab fares and waiting list for Ronald McDonald House. When Ryder is ready to come home they arrange everything too. Saw Dr R and he checked Ryder to make sure he was fit and healthy and ready for surgery. We got a good luck and Ryder got a Teddy and gift bag from Heart kids and IKEA. We flew to Melbourne that afternoon.

Preadmission Day

Wednesday 17th March 2010

On preadmission day we got up at 5.30am to give Ryder a bottle because he had to fast from 6am so he could be sedated for the Echo if needed. We left for the hospital at 7.30am and went for a walk so Ryder could have a quick nap before his big long day. At 8am we went to the Admissions desk to pick up Ryder’s file. We then went up to the 7th floor reception and waited for the preadmission nurse. We were lucky that the family that got there before us had forgotten to pick up their file because it meant that we got to go in first. We spent most of the day reporting back to the preadmission clinic and waiting in the parent’s room. First off, we chatted to the nurse about Ryder and answered questions about his health, diet and comfort items. She then took measurements of height, weight, blood pressure, temperature, heart rate and oxygen saturations. We then talked about fasting for surgery day and Ryder had a urine test.

Next was an echo and ECG. Echo went well and Ryder was really good for 45 minutes and didn’t need any sedation. It was probably Ryder’s favourite part of the day as he got a pillow and watched “in the Night Garden”. Ryder cried a bit during the ECG but settled down when Daddy started blowing bubbles.

We then went back to the preadmission clinic and the nurse put numbing cream on Ryder’s hands and feet ready for bloods later on. We were then sent down to x-ray and to speak with the surgeon.

Surgeon explained TOF and then explained how it is fixed:

- use piece of heart sack to patch VSD
- use heart sack to widen and patch pulmonary artery (not sure if this was done quite like this, explain later).
- Clean up valve muscle build up.

Surgeon explained it was a delicate balance between taking away the blockage and preserving the valve. He explained that it is very rare for the valve to not leak and how bad the leak is determines when the valve will need replacing. This can range from 3 or 4 years to 30 to 40 years.

Were told we would find out more about valve replacement after surgery, although at the moment we have two different stories, our cardiologist in Adelaide is hoping to tell us more once he gets a full report.

Surgeon then told us about some of the risks of surgery which are all very small.

- 1-2% chance of death
- Small chance of temporary pacemaker due to swelling in the area that carries message for heart to beat. Most case swelling goes down after a week and normal heart rhythm returns. Very small amount need a permanent pacemaker.
- Infection
- Cutting through invisible vessels that deal with fat which could lead to a low fat diet.

We then signed consent and thanked the surgeon. I have to add that Ryder was very rude while we were speaking with the surgeon and decided to start crying for his bottle. The surgeon stopped so I could make Ryder a bottle. I have never been so embarrassed in my life and felt so rude that this man who was going to save our babies life had to stop talking so Ryder could eat.

Went back to preadmission clinic and talked about surgery day, tubes and recovery.

Ryder had his doctors check up and passed with flying colours.

Had bloods done. I chickened out at this point and had to leave the room. I couldn’t stand the thought of holding him down while he was upset (little did I know that his recovery time would involve lots of holding him down while he cried). I also had a moment of “I can’t do this” and was ready to run away and take Ryder with me. Turned out that Ryder was a little champ and didn’t cry at all while they took blood.

The social worker liked Ryder a lot and was surprised at how well behaved he was. Talked about accommodation, hospital resources and parents room.

We then had a tour of the ICU. The reception lady was really nice and let Ryder take her ID tag on the tour and gave him a teddy bear which he lost after 10 seconds, luckily he did not lose her ID badge. Had a quick look around ICU. The usual stay is 24 hours and the more tubes that come out, the better. Was told that after the surgeon rings on surgery day it usually takes 2 hours for ICU to get set up so not to rush to get there.

Had meeting with cardiologist. He did the same checks as the doctor and said that the ECG, echo and x-ray looked as expected.

Had a tour of the ward but was a bit distracted by Ryder. All I took in was that there are 4 beds in each room, the chair turns into a bed and to bring own formula and bottles if wanted.

Finally at the end of the day we were about ready to leave and we were told that Ryder’s surgery had been moved to Friday instead of Thursday – agh. We decided to take him to the zoo.

So in summary preadmission day involves:

- General Health Checks
- Giving information on your child
- Echo
- ECG
- X-ray
- Consent with surgeon
- Run through of surgery day and recovery
- Doctors check up
- Bloods
- Social Worker
- Tour of ICU and Ward
- Cardiologist check up

Sounds like a lot but you have a nurse who looks after you all the way and makes sure you are where you need to be and get everything done.

Night before surgery Instructions

Fasting from 1.30am, clear fluids allowed until 5.30am.
Have a good bath before bed and wear socks.
Quick bath in the morning.



Day of surgery – later to be known as attempt 1

Woke up at 5am to give Ryder some apple juice, a bath and dressed him in his superman outfit. Got to hospital at 7am. Waited in corridor outside “admissions – day of surgery” with other parents and children. The parents looked so sad, I suppose Matt and I probably looked sad to.

Checked in and waited in the waiting room called the “Pelican Landing”.

Was first to be called in by nurse for weight, Oxygen sats, temperature and tagging.

Went back to waiting…

Ryder was very happy for the two hours we were there. I felt really proud that we must be staying calm and positive and passing on these vibes to him. I concentrated on staying happy and cheerful so that Ryder would feel safe and calm. This was really helpful for me.

Was really hard seeing so many unhappy, scared parents. The eyes were such a big give away to the sadness being felt in that waiting room. So many teary, red eyes.

One of the parents we were waiting with went in for her meeting with the anesthetist and surgeon. When she came back she told us that she had asked the surgeon if it was ok that her son was wearing his pyjamas. The surgeon told her that he didn’t care if he was dressed as superman. She laughed and told the surgeon “well actually there is a baby in the waiting room wearing a superman outfit”.

Anyway after 2 hours waiting the cardiac nurse came to tell us that surgery had been delayed due to two heart transplants.

We then had the weekend to wait and Ryder was booked in for first up on Monday. We decided to go to the Museum.

I am so proud of us for how we are coping and being there for Ryder. Making things happy and staying cheerful have been great for us and him.



Surgery Day

Did the morning routine again and got to hospital at 7am.

We didn’t spend long in the waiting room and quickly got to speak with the anesthetist whose name was Elmo. He asked lots of questions that we were asked over and over again.

1. When was Ryder diagnosed?
2. Any Tet spells?
3. Allergies?
4. Where are you from?

Anesthetist went through what he does. His job takes about an hour and a half before the surgeon can even begin.

We then talked to the nurse and were asked the same questions before being taken to another waiting room.

Everyone loved Ryder’s superman outfit.

Spoke to another anesthetist who asked the same questions and had lost Ryder’s file. I was a bit worried about this anesthetist as he looked very tired.

We were then taken to the operation holding area and talked to yet another anesthetist who asked the same questions. Ryder was given some medicine to help him relax.

I will never forget seeing our little superman being wheeled off in his cage (cot) for surgery. He looked so happy, he had no idea of what was to come.

So he was in at 8am, had a little cry and went straight back to the hotel.

We originally planned to go the aquarium for a few hours but changed our minds. I wanted to stay close to the hospital. I didn’t feel like surgery would take too long because Ryder has been so well. I suppose you fill in the surgery time in what ever way feels best for you. We eventually went to a nearby café for something to eat with matt’s parents. At 12pm we got the phone call from the surgeon. The surgery went well. He said Ryder has a strong heart. The valve is not leaking. We can see him in 2 hours. I just want to rush over there but stay and finish eating and then stop by the hotel to call my parents.

2 hours later we got to see him in ICU. I’m not sure why, maybe we were prepared, maybe when it is your own child you see past the tubes, but my first reaction was that he looked so good. Maybe seeing your child alive and safe after surgery is just so amazing that they look great. I was just so happy to see him. I’m sure other parents feel differently but this is how I felt, so happy to see my boy, I missed him so much for those hours he was in surgery. It certainly wasn’t as bad as I had expected. I didn’t cry, I was so overwhelmed with joy that my boy had made it through surgery.

He had a lot of tubes and wires. Some include:

- Ng tube, internal thermometer, breathing tube in his nose
- Lines/drips in neck, arm and leg
- Chest drains
- Oxygen saturation
- Pacing wires
- Catheter
- Heart rate wires
- And quite often they left the blood pressure cuff on his leg

There may have been more, I can’t quite remember.

He was definitely a tangle of wires. Just remember to look past them and see your beautiful, amazing child.

We went home to sleep at 7.30pm.

At 4.30am we got a phone call to tell us that Ryder had been extubated and was very distressed and they wanted us to come in. Scared the hell out of Matt getting a phone call that early. I was half asleep and actually thought the phone was the alarm and it was time to get up.

We rushed over to the hospital, realised that the front doors were locked and had to find the emergency entrance.

When we got to ICU Ryder was having cuddles with the nurse. She said that he was settled for a few minutes and then would cry again. She asked if I wanted cuddle and I said yes. It was very scary with all the wires and I was terrified that I would hurt him or pull something out. It was horrible hearing his cry (one I have never heard before, sleepy out of it, but in pain), heartbreaking.

Although it was the best feeling ever to cuddle my baby boy. I have never felt so needed in my whole life. As soon as the nurse put him on my lap, he turned him self around to snuggle into me and fell asleep. He was so content in my arms. Matt had a cuddle too and he was happy with him as well.

Eventually we put him back on the cot and worked out to put him on the side, supported by a blanket, this made him happy, he has never liked being on his back.

He also pulled out a drain (not as bad as it sounds) in the process of a nappy change.

After doctor rounds at 8am he was moved to the ward. What a relief!



1 Day post op Tuesday

- breathing on own 13 hours post op
- moved to the ward 21 hours post op
- catheter and arterial line removed
- internal thermometer removed
- oxygen turned off, nose prongs left in for use during night if needed
- put on 80% fluids

10 minutes after being moved to the ward Ryder decided it would be a good idea to roll onto his stomach. The nurses said if he is happy like that then they will leave him there but they don’t see babies doing it very often.

2 days post op Wednesday

- oxygen prongs removed
- Ng tube removed
- 1 drug stopped
- Ryder is more like himself, awake, chattering, playing with his toys
- Heart rate has been high for 24 hours (170-180). Doctors give him fluids to see if he is dry but this does not bring it down. They give him some more morphine to check if he is in pain but this does not work. He has an ultrasound to check for fluid build up but there is none. He is put on medication to reduce his heart rate as they want his heart to be able to rest – no one was able to tell us how long he would need to be on the medication for.
- Ryder is allowed to have 100% fluids

3 days post op Thursday

- very upset when given meds, nappy changes, etc
- Doctors wanted to remove one of his drains but nurses nicely convinced them to leave it in so they could both be removed at the same time.
- Bandaids on face and arms were the only thing removed.
- Morphine moved from foot to neck line
- Still on meds to regulate heart rate
- Mummy changed a nappy on her own
- Gave Ryder a sponge bath
- Foot drip rewrapped due to leak
- Had ECG
- Ryder is playing and giving a few very weak smiles.

Finding it very upsetting seeing older children during their recovery, they are able to communicate their pain in words and are old enough to have real fear. I don’t think I will ever forget the 3 year old and 8 year old that shared Ryder’s room. My heart nearly broke every time they cried out “No” when the nurses were trying to help them sit up and get moving again. Absolutely heart breaking.

4 Days post op Friday

- Drains and pacing wires removed – nurses told us that we should leave for this as it is a bit yucky.
- ECG and echo look good
- Ryder is eating and drinking well
- Big smiles
- We get our first look at Ryder’s scar, it is not as bad as I expected and is healing nicely.
- Neck line is taken out, I leave for this as I can’t watch Ryder who is screaming and we are unable to comfort him.
- During the night Ryder starts crawling around the cot and pulling up and cruising round the rails.

It was also hard to see the newborn babies who had been transferred to the hospital because a heart defect had been diagnosed at birth. I felt so sad for the parents who had just been thrown into this world of CHDs. I remember feeling a bit the same when we first found out about Ryder’s heart, I think we were lucky that it was detected at the 20 week ultrasound because I can not imagine finding out just after giving birth.

5 days post op Saturday

Ryder is discharged from hospital and we are allowed to take him back to the hotel with us, he was very quickly back to his happy, smiley, giggly self. We have to keep giving him two diuretics and his heart rate medicine. On the Monday we went back in for a check up to see when we could fly home. We got the Ok to fly home the next day. When we got home we had to go to our own cardiologist for a check up, ECG, echo and x-ray. Felt so good when we finally got home to our house. All up we spent 2 weeks away due to delays.


Looking forward:

Ryder was very quickly back to his old self but perhaps slightly improved, his nails are pink and he doesn’t puff and pant anymore. He is happy and active and we are so happy that everything went so well for him with his surgery and recovery. As for the future, we are hopeful that Ryder will not need anymore work done on his heart but this is not guaranteed and we have to live with that. Our cardiologist told us that the surgeon left behind some of the blockage in the pulmonary artery so he could keep the valve in tact, that means that Ryder will not need a valve replacement in the future because his valve does not leak. The only worry is that if the pulmonary artery does not widen as he grows he may need a ballooning procedure or (very small chance) more surgery. So this will be kept an eye on at our yearly visits and hopefully nothing will need to be done (fingers crossed).

It would be nice if I could end this story here, that is what I would really like to do, but a heart story continues on with yearly check ups and worries at the back of your mind. I finally understand why other heart parents tell you that once you are a heart parent, you are always a heart parent, it’s just a part of your life.

I will keep adding to Ryder’s story, we still have a few more appointments with the cardiologist before we go to yearly visits. I really hope that our story is helpful to others. I wanted to write it because it was exactly what I wanted to read when Ryder was first diagnosed with a heart defect. I wanted to read other people’s stories, I wanted to know everything, what to expect. I wanted to read a happy story and I believe we have been truly blessed that our story has been a happy and positive one and I pray that it will continue that way