Harrison's Third Heart Surgery (2000)

*Please note that there are photographs of Harrison in intensive care in this post. I don’t take photographs of him when he’s unconscious or unstable. However, I’m aware that some of the photos with Harrison having therapeutic oxygen /  non-invasive ventilation support, and with various lines going into his body may upset some people.*

 

Harrison spent his time on the ward confined to his highchair because his tube feeds had to be virtually trickled into him . His body was struggling to keep him going, and feeding and digestion was just another stress on his system. At least we had the Sydney Olympics to keep us all occupied! We rarely made it outside the hospital to enjoy the summer sun because Harrison was not well enough.

He painted this abstract picture a couple of days before his third surgery. It's proudly displayed at the top of our stairs at home:

Harrison had to wait until October 9th for this surgery. His surgeon had gone away for a foreign conference and the intensive care unit was blocked with long-staying cases. Harrison wasn't in the best shape and the complex surgery meant that there was a 20% chance that he wouldn't survive it. I had to sign the consent form......

Harrison had a major bleed towards the end of the surgery; the surgical team experienced great difficulty in tracing, and eventually stemming the bleed. The surgeons had closed off more surplus arteries they found, and had fitted a homografted pulmonary artery from the lower end of his right ventricle, over the heart, and reconnected to the junction of the left and right pulmonary arteries. The large VSD Harrison had, was patched. His right pulmonary artery was widened. The homograft would have depressed Harrison's right-sided aortic arch onto his trachea and oesophagus, so the surgeons stitched the homograft onto the chest wall. They had not performed this step before in similar operations. One large surplus artery remained which the surgeons physically could not reach safely. 

Harrison recovered fairly well initially, but after several days on a ventilator, his progress stalled, and the intensive care team couldn't deduce why. Five days post-surgery, Harrison was diagnosed with parainfluenza and was isolated. This could often be fatal. He spent a month in intensive care with three weeks being sedated and ventilated to give his body time to recover from the virus.

We spent as much time as we could next to his bedside just talking and reading to him, holding his hand and reassuring him. However, we obviously needed breaks to eat and rest so that we could support him, although I mostly kept going on adrenaline to minimise my time away from Harrison. 

During our absence and to give Harrison a well-deserved break from the monotony of our voices, we played his favourite video to him via a Walkman (hands up if you remember them!) and headphones. Harrison had developed an obsession for a particular Tweenies video – “Tweenies Song time”. He would watch it on repeat day after day and it brought him much joy. He even managed to monopolise the single television in the bay he shared with 5 other patients whilst waiting for this surgery! 

Knowing Harrison’s past history of recovery from surgeries and procedures, I’d anticipated that he may not be able to watch his video for a while and had recorded it onto a cassette tape prior to his untimely re-admission. It was something that I had decided to do during his intensive care stay following his first surgery. At that time, I’d repeatedly read some of his favourite books to him but wanted to work out a way of providing a bit more variety whilst he was unable to interact. I hoped that he may appreciate hearing familiar, favourite songs. 

An added benefit of playing tapes through headphones to Harrison was that they helped to block out the sounds of the intensive care unit because although he was sedated, he was still aware. During this hospital admission a close friend sent him a Thomas the Tank Engine story tape too. Thomas was another favourite of his which we then alternated with the Tweenies.

Harrison was extubated on Bernard’s 30th birthday. What better birthday present could you ask for?! Although Harrison was still quite drowsy from all the sedation, being off the ventilator and just on non-invasive ventilation was a huge boost for both Bernard and I. So much so, that we both felt able to celebrate the occasion by going out for a meal with Bernard’s eldest sister and her family who’d very kindly came up to share Bernard’s special day with him. Until that day, we had only eaten in the hospital restaurant and coffee shop, not wanting to be more than a couple of minutes away from the children's ward  or Paediatric Intensive Care Unit (PICU).

Spending time without supplementary oxygen was initially very tiring for Harrison.
He already had poor muscle tone due to 22qDS but had lost even more
and needed extra support to sit up.

As Harrison recovered in intensive care, he was given some simple puzzles to do to see whether there had been any lasting impact on his brain.

Forget the baby puzzles; he wanted proper toys
(aka dad's Blackberry!)

Being such a long time in PICU the staff became very familiar with him and decided that he should start doing some work and one nurse in particular liked Harrison to help her log notes about his care onto their computer system!

He was treated like royalty, in that a television was wheeled in for him and as you can see from the photograph below, he was glad to be able to see and catch up on his favourite television programme of the time which was ‘Who Wants to be a Millionaire?’ A very strange choice for a 2 ½ year old but he even had the quiz book in his toy box!

It doesn't matter how poorly you are, 
you still have to have your hair washed!!

When he was finally well enough, Harrison spent another three weeks recovering on the ward. His gut motility had stopped working so he ended up on Total parenteral nutrition (TPN). He'd also been fitted with a gastrostomy (a more permanent replacement for the nasogastric feeding tube) a few months previously which was vital in helping his recovery back to 'eating' normally for him. You'll read in other blog posts how Harrison's eating always takes a hit post surgery; he fancies food but just can't eat it. 

It took his stomach a couple of weeks before he could digest food properly, and because he had spent several weeks in bed, he could no longer sit up or walk unaided. 

He was so impressed with his Happy Meal - not!
We couldn't tempt him to eat more than a bite of one nugget. 

The physiotherapy team brought the special armchair (pictured above) to the ward for Harrison to use. It was completely supportive and could more or less mould to Harrison's body shape thus keeping him in a better seating position. If we sat him in his high chair, he would just end up falling to one side because he couldn't support himself any longer. As you can see from the photograph he spent time lying down in his bed playing with his toys because he was no longer strong enough to sit up in bed.

 

Harrison was admitted to The Royal Brompton in the height of summer and discharged back to our local hospital for a few more nights in December. 

I’d not experienced an admission where we spanned two seasons before. However, we were home in time for Christmas!

 

After four months of intensive occupational and physiotherapy at home, Harrison was able to walk unaided again. 

Things were going well, but then he started catching recurrent infections again, so is now taking regular prophylactic antibiotics.

 

Glossary:

Extubated: when a doctor or nurse removes the ventilator tube that was helping a patient to breathe.

Gastrostomy: a tube which is inserted through the abdominal wall into the stomach. It is usually used to give nutrition to an individual unable to consume sufficient calories by mouth.

Non-invasive ventilation (NIV): uses a machine to help with your breathing. It's a bedside machine, connected to tubes and a mask, which is worn over your nose and mouth. As well as helping with your breathing, it supports your lungs, giving your body the chance to heal .

Prophylactic antibiotics: are antibiotics taken to prevent infection. Prophylactic antibiotics decrease the risk of an individual developing infections that can sometimes be life-threatening. They can also stop a chronic or recurrent infection from coming back. 

Total parenteral nutrition (TPN): is a method of feeding that bypasses the gastrointestinal tract. A special formula given through a vein provides most of the nutrients the body needs. The method is used when someone can't or shouldn't receive feedings or fluids by mouth.