"It made us feel like a family unit again"
Guest Blogger: Geraint Jones
Ffion has had breathing issues ever since she had Bronchiolitis at six months old in December 2010. Ever since, cold and flu result in her having severe breathing difficulties resulting in hospitalisations.
In April 2012, Ffion was transferred to the PICU (Paediatric Intensive Care Unit) at John Radcliffe after being in Royal Berkshire PHDU (Paediatric High Dependency Unit) for three weeks prior in Reading.
Ffion was connected up to various machines and a ventilator down her throat to breath for her. She was in a controlled coma for 13 days, during which we read her favourite stories at her bedside, and we were allowed to play CDs of her favourite music to her. After being ventilated and countless x-rays, she was diagnosed with pneumonia and was fighting for survival. She was in PICU for two weeks, and PHDU for a further six weeks.
This was obviously a very worrying time for us, and was the first time we’d come across Ronald McDonald House Charities. The facility was essential for us, it gave us somewhere to sleep whilst only being five minutes away from Ffion’s bedside if needed. It also meant that we could call (or be called) Ffion’s nurse any time of night via a phone line at our bedside.
The House not only provided an en-suite bedroom with television and telephone, but also provided communal kitchen and laundry facilities. This was essential for an eight week stay (other families there were there for much longer!), and meant that thoughts and efforts could be directed fully at Ffion’s needs and recovery.
The television gave us rest bite from the fourteen hours we’d spend by her bedside a day, and maybe even helped us relax for an hour. The kitchen gave us the ability to cook simple meals in the evening. It was also a good place to meet other parents who were in a similar situation, and we were able to share our stories and support each other.
The biggest help for us as a family though was being able to have Hannah , Ffion’s twin sister, stay with us over the weekends, and made us feel and live like a family unit again for a couple of nights. Meeting up was the highlight of the week for both girls.
Without the House, not only would we have had our daughter in intensive care; but we’d have had to sleep in the car and then manage food/laundry between home (1 hour away) and hospital on a daily basis. Having a child critically ill in hospital is hard enough without all of that to manage; not to mention the sleep deprivation as a result of sleeping in a car for two months.
Since then, the nightmare has returned a further 3 times with a return to PICU and PHDU for several weeks at a time. Again, Ronald McDonald House Charities comes to the rescue in a similar fashion every time.
When a child is critically ill, they need a familiar face or voice more than ever, and that face or voice needs to have a clear mind to take in all the information from the doctors/consultants/nurses, and to answer all the pertinent questions from the child.
Stress is a large factor in elongating the length of time spent in recovery, and the fact that Ffion knew that we were just five mins away (or “just upstairs” as she called it), day or night, was a big comfort to her and facilitated in her making the recovery she did in the time she did.
For that, we cannot thank Ronald McDonald House Oxford enough, and will forever be indebted to them.