30 Nov 2020, 12:16 p.m.
At nearly two years old, GOSH patient Rocky has been in and out of GOSH for most of his life. He has had many tests and procedures, including treatment for respiratory problems, feeding problems and sleep apnoea. Here his mum, Clare, tells us about their journey so far.
In December 2018, Rocky was born three months premature. Clare’s platelet levels and liver functions had dropped so low, he had to be delivered early.
Due to complications during her 12-week scan, Clare had already been in touch with GOSH from quite an early stage in her pregnancy with Rocky. She had been told that he could have a syndrome due to some abnormal measurements during some routine tests. She started undergoing more genetic tests to try and find out what could be wrong.
Arriving at GOSH
Rocky was first admitted to GOSH as an inpatient in May 2019 for a micro laryngoscopy and bronchoscopy (MLB) procedure, to try and help with his feeding. At this point, Rocky was being fed by a nasogastric tube, as he was overwhelmed by oral feeding.
Initially, he was due to be at GOSH overnight, but ended up staying on Panther Ward for two weeks.
“It was our first admission to GOSH, but they made it feel like home,” says Clare.
Home from home
Since his first visit, Rocky has been in and out of GOSH, and at one point spent four months there as an inpatient.
In July 2019, he was admitted to Leopard Ward for a reflux test. It was supposed to be an overnight stay, however, upon arriving at GOSH, it became clear it would last much longer.
“The respiratory doctors were lovely. They explained everything clearly and spoke to us honestly about how long Rocky might be staying in hospital,” recalls Clare. “They didn’t want to send him home until they were 100% happy with him.
“I knew they were going to do everything in their power to find out what was going on and try and help him.
“As we were in GOSH for so long, we made close bonds with the nurses, the doctors and the play workers. It was our home for four months.”
Treatment at GOSH
Many tests were done on Rocky during his four-month stay to try and come to a diagnosis, including sleep studies.
The first study showed that he had sleep apnea and needed assistance breathing whilst sleeping. Rocky also had an obstruction due to his floppy voice box.
He was put on a Bilevel Positive Airway Pressure machine (BiPAP) which enabled him to maintain a consistent breathing pattern whilst sleeping.
The next stage of Rocky’s treatment was to work on a feeding programme to help him gain weight. After a few different approaches were tried, he had a nasojejunal (NJ) tube fitted – which allowed him to be fed directly into his stomach.
After a few weeks, doctors decided that Rocky should also have a gastronomy tube (G-tube) inserted via surgery.
Undergoing surgery and spending time on PICU
In September 2019, Rocky underwent surgery at GOSH to insert the G-tube.
Unfortunately, there were complications during the operation due to Rocky having trouble breathing. Every time the doctors tried to insert the breathing tube, Rocky’s oxygen levels dropped dramatically, and they had to make the difficult decision as to whether to continue the surgery or not.
“Rob and I just looked at each other and told the surgeons to continue. I knew his medical team were specialists, you have to do what you have to do,” explained Clare.
All went well and when Rocky came out of surgery, he was admitted to PICU.
“I couldn’t fault the nurses on PICU. They explained everything which helped us to stay calm and put us at ease,” Clare says
“It was really difficult to hand over the reins and take a step back and allow the staff to do everything for Rocky and, although it was overwhelming, I was completely reassured by them.”
Rocky stayed on the ventilator for four days and had his intubation tube taken out successfully in theatre. Gradually, he got stronger and was able to go back onto GOSH’s Kangaroo ward.
Making the journey home for Christmas
After six weeks, Rocky had a Mic-key button peg fitted to his gastrostomy.
Add on another four months, and he was self-ventilating and eventually discharged from GOSH.
“As you can imagine, it was a relief to be told everything’s fine as well as very nerve-wracking to leave GOSH. It was a very surreal experience to drive with Rocky in the car and it didn’t sink in that we were actually taking him home,” she says.
“We were told that Rocky could have been in GOSH for up to a year. We were mentally planning on being at GOSH at Christmas and that he would have to spend his birthday there. So, when he was discharged in October, it meant we could make plans for Christmas with him at home – just the four of us as a family on Christmas Day, which was so special.”
Right now, Rocky is in a good place and his complex needs can be managed at home. He’s still in and out of GOSH regularly, but he is stable.
His future, however, is still uncertain. After many tests, the genetics team has not been able to diagnose Rocky, so his family will have to wait until new developments have been made in the testing before they know what’s wrong.
Despite it being difficult not knowing, Clare and her family can’t fault GOSH. Having spent so much time on different wards, they have built up good relationships with the doctors, nurses and play team, and have been reassured by the amount of care and support that was always available.