Thank you to Lia for today’s “Inspirational Mum” post!
I have no idea how Lia and Lucas got through this.
THE JOURNEY TO MY DREAM JOB … HOW LONGCROFT LUXURY CAT HOTEL PAMBER HEATH CAME TO BE.
I am always asked by people how I came to be the owner of Longcroft Luxury Cat Hotel in Pamber Heath. The answer is not a short one I’m afraid, but if you are interested, here’s a little story for you …
At the age of 26, having previously worked in a Psychiatric unit and then as a support worker for Mencap, I had moved from Hampshire to Wales with my partner and cats and was slogging through my final year of a Psychology degree at Swansea University. We were delighted when I discovered I was pregnant and agreed that we could just about make it work through my final year of uni, working around my partners’ shifts and my studies with a new baby.
Everything changed though when my 20 week scan revealed that my baby had a very serious congenital abdominal condition called Gastroschisis, which, as I quickly learned, meant that his small bowel was on the outside of his body. The shock of finding out such news is life-altering and devastating in equal measures. There was nothing I could do whilst pregnant except keep healthy and busy, so I continued my studies in between numerous scans and hospital check-ups. When I went into labour 6 weeks early, there were no special care baby beds available in Wales and I was taken by ambulance to Birmingham Women’s Hospital where my son Lucas was born by emergency caesarean.
He was immediately taken away from us and transferred to Birmingham Children’s Hospital, where he had his first operation of many at just a couple of hours old, his condition far worse than any of the scans had prepared us or the doctors for. To cut a very, very long story short, we spent the next 8 months living in hospital with Lucas while he battled for his life, enduring several operations, countless life-threatening infections and a desperate fight by the doctors to save his small bowel. He ultimately lost almost all but 10% of his small bowel and was fed intravenously, directly into his bloodstream via an intravenous line into a vein near his heart, thus totally bypassing his dysfunctional digestive system. Whilst fulfilling his complete nutritional needs intravenously, this method of nutrition (known as TPN) is also dangerous to other organs, and before long, Lucas was diagnosed with liver disease and several other complications.
And so it went on for 5 months at Birmingham Children’s Hospital before being transferred closer to our families to Great Ormond Street Hospital in London for another 3 months. Obviously, my degree was now a thing of the past – no longer either possible, or remotely important. During this time, Lucas’ health became more stable, and we were taught how to connect Lucas to his TPN machines at home. It was the most daunting, and wholly responsible thing I’ve ever had to learn, with life-threatening consequences for Lucas if either of us got it wrong, but by this stage, we just wanted to take him home, and I would have done anything! Living in a hospital for 8 months is a VERY long time! Luckily, our lovely neighbours in Wales had been looking after our cats, but I missed them terribly and was delighted to be reunited with them when we finally got out of hospital and moved back to Hampshire again.
When Lucas was a toddler, his dad and I parted ways, still the very best of friends, but the next several years coping, essentially as a single mum were very hard. Lucas and his health were the only priorities in my life and our lives pretty much revolved around Lucas’ healthcare regime, connecting him to his machines each night and traipsing to various different specialist hospitals during the day as well as more emergency situations than I could count. Lucas started school, but rarely made it through a week without missing days due to appointments or ill-health.
We were told by his consultants at Great Ormond Street that it was unlikely that the tiny scrap of small bowel that Lucas had left would ever adapt enough for him to absorb the nutrients from actual food enough to sustain him without the TPN. However, I wanted to try. I wanted Lucas to not give up and not limit the possibilities of his future without trying. So began a battle of wills for several years, with me encouraging Lucas to eat actual food, and Lucas resisting – not enjoying food – having missed out on that vital ‘critical period’ of learning to eat when he was a baby. It was a very slow burn, but Lucas eventually started to enjoy a very small selection of specific foods and we built on that, day-by-day, week-by-week and month-by-month until Lucas was able to eat enough food to enjoy the odd night TPN-free. It was this that spurred him on to keep trying to eat more and different foods. He loved the freedom of not being connected to a feeding pump at bedtime – being able to get up and go the loo without having to drag his rucksack containing his TPN and his pump behind him (it was too heavy for him to lift for years!) Not having to worry about whether his lines were going to get wrapped around his body or neck during the night when he turned over and risk pulling his line out of his heart.
You can read the rest of this post at the following link HERE.
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