Tag Archives: hospital stay

The Mystery of the Missing Bed

Courtesy of http://www.enidblytonsociety.co.uk

It sounds like one of the Enid Blyton stories that my children have been listening to at bedtime recently. M and G have been loving the adventures of Fatty, Buster and the rest of the Five Find-outers gang, but this was a mystery set to challenge even the hardiest of intrepid adventurers.

Having received our summons to GOSH less than 24 hours earlier, and laden down with suitcase, backpacks, Lego advent calendar and the ever-present Cat, M and I found our way across London, through those infamous front doors and up to the long-term gastro ward. We approached the nurses station and were greeted by a bemused looking senior staff nurse, who seemed uncertain as to who we were and why we were there. I gave her M’s name and that’s when a look of complete panic swept across her face. His name wasn’t on her master list, she hadn’t been expecting him and at that precise moment of time, there was no empty bed ready and waiting for him.

With profuse apologies and a promise to get hold of the ward administrator, the nurse in charge and the bed manager, M and I were left, with our bags, in the somewhat small and cramped playroom, whilst the mystery of M’s missing bed was investigated. After the early start to our day and an emotional goodbye to G, I barely held it together as I called Mike with a slight hysterical edge to my voice. The play co-ordinator found a circuit board kit to entertain M and I got chatting to another patient and her Mum, who had just been turfed out their room and were waiting to hear where they were being moved to. We all sat there for nearly 2 hours, whilst those in charge negotiated, discussed and settled the bed situation for all involved.

Courtesy of en.wikipedia.org

I might never know why the mystery of the missing bed happened or how it was resolved to everybody’s satisfaction, but I’m delighted that, thanks to the hard work of the nurses and the obviously determined look on my face that meant I wasn’t going to take no for an answer, M’s bed miraculously appeared in the “bay” and we could finally get ourselves settled in for the duration.

In Mummy’s arms

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Courtesy of susanstark.net

I lay awake in the early hours of this morning, watching my beautiful babies peacefully slumbering alongside me in the bed. I know that this morning, more than any other morning in recent days, both children needed the comfort of being in Mummy’s arms and resting with me. After weeks of (im)patient waiting, yesterday afternoon the phone-call finally came and at the remarkably short notice that I had been anticipating. I had less than 24 hours to book train tickets, pack a case, prepare crib notes for Mike and contact everyone who has anything to do with M to let them know about his hospital stay over the next 3 weeks, as well as the everyday tasks of cooking dinner, making packed lunches and sorting school clothes for the next day.

Whilst I whirled around the house in a haze of slightly panicked chaos, the children spent their last evening together for a while in typical fashion – hurtling from cuddling up to each other to threatening to scratch the other’s eyes out in a matter of minutes. M was particularly hyper and could barely sit still in his seat. Instead, he bounced, jigged and ran around the house like a mad thing, the clearest sign that his stress levels were high and gradually rising even higher.

We had a “last supper”, together as a family. One chosen by M. His consultant had suggested that he could relax his diet just a little before coming off food altogether and so Mike and I had expected him to choose something like fish and chips or Chinese. Instead, he requested the item that had been at the top of his Christmas list this year – an egg. So, the four of us enjoyed a poached egg on toast as well as a “dippy” egg with toast soldiers. It was a simple meal, but one that he heartily enjoyed and devoured with gusto.

Finally bathed and in their pyjamas, Mike read them a bedtime story, whilst I ran through my mental checklist and gathered up the last few bits to accompany us to London. G settled to sleep as quickly as ever, whilst M was awake until 11pm. He finally slept, snuggled into my side, with my hand tightly gripped in his much smaller one. Mike carried him back to his own bed and then we tried to sleep ourselves, knowing that, for me in particular, sleep would be a precious commodity over the next 3 weeks on a hospital ward.

I’m not to sure what time G crept in to our room, but I was suddenly aware of her presence on my side of the bed and she was quick to climb in for a cuddle as soon as I invited her in. My big girl doesn’t need my comfort so much these days, especially at night, but tonight she needed to feel Mummy near and I loved having that opportunity for an extended cuddle. Less than an hour later, just as I was drifting back to sleep, I heard the sound of footsteps running across the landing and in climbed M, snuggling down in his preferred position between Mike and me.

Courtesy of paediatricsconsultant360.com

Our bed isn’t really big enough to fit 4 these days, but tonight, of all nights, I relished the quiet opportunity to have our whole family together, in peaceful harmony; something that won’t happen again until M and I return from our adventures at GOSH,

Waiting

A Parent’s Survival Guide to staying in hospital

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I have lots of experience of extended stays in hospital, but the proposed week ahead with M felt more daunting than normal. It might have had something to do with his very obvious nerves and reluctance to go, but I worried about how I was going to keep him entertained and comfortable for a week filled with heavy-duty bowel prep, anaesthetic and scopes. I turned once again to the support of FABED, where I knew a number of parents had experience of, not only an extended stay at GOSH, but on Kingfisher ward too, and asked them for their suggestions of essential things to take with us.

So, it is with many, many heartfelt thanks to those wonderful individuals, we survived the week and I’ve put together a list of the “must-haves” for a hospital stay:

A supply of easy-to-store snacks and squash for both parents and child – remember that your child might be on a restricted diet in preparation for their procedure, so be flexible and prepared to nip out to a local supermarket to add to your stock if needs be

I-pad/tablet/DS plus games AND chargers – these were invaluable as M was confined to bed for a lot of the week. I loaded a number of his favourite audio books on to my tablet, which gave M something to listen to at bedtime. A crucial part of his regular night-time routine

Favourite books – a mix of something your child can look at on their own as well as old favourites that you both can share

Favourite toy/comforter – M’s cat travelled with us as always and went almost everywhere with M. It’s not so much that M struggles to sleep without him, but he’s a source of comfort when uncomfortable medical procedures have to be endured
Cat ready in his scrubs for the week ahead
Colouring In/Stickers/Craft activities – anything that can keep them occupied whilst they’re in bed. A friend suggested we could start on our Christmas cards whilst there – I just wish I’d had time to sort that one out as it would have been something we could have begun with no pressure of having to complete it when M had had enough

School-work – ask if your child’s school is prepared to send some work for them to do during their stay. Needless to say, M was extremely reluctant to do any during the week, but we persevered and read some books as well as practised some spellings ready for a test on his return
A little reading and some spellings to learn

Headphones/ear-plugs – if you find it difficult to sleep in a quietly busy location, then these will be invaluable to making sure you get some rest. We bought a set of headphones for M, which were a real life-saver during the week. He was able to listen to the TV and audio books without disturbing anyone else and that really helped him to settle to sleep each night

Mini lego sets/action figures – M has recently enjoyed playing with some plastic soldiers that he “won” when we were last on holiday in Canada. For this stay, I bought a pack of them which included tanks, planes, helicopters and bunkers – hours of fun that constantly changed and that could be put away quickly too
M and Daddy putting together some new Star Wars Lego
Top trumps or travel games – they’re small, easy to pack and entertaining for at least 5 minutes! We could play a game and then pack it away as soon as M wanted

Courtesy of waitrose.com

Clothes – Enough clothes and sets of pyjamas to see you through the week. As M was having bowel prep, I packed masses of underwear as well as pairs of pjs – it still wasn’t enough, but got me through 24hours without too much stress

Warm jumper – for both the child and the parent for when the nights get chilly

Washing powder/gel – we went through M’s clothes far quicker than I had anticipated. Fortunately GOSH has a Patients laundry room with 2 washing machines and 2 tumble dryers. I was able to run a load through both every evening at a cost of no more than the washing powder to clean the clothes

Slippers – I really, really wish I’d thought of taking slippers with us for both me and M. I didn’t want to wear my shoes all the time, but wasn’t always comfortable to walk around in nothing more than my socks

Blanket/pillow – it’s nice to have that extra bit of comfort that reminds you and your child of home. M had 2 blankets with him, which he curled up with every night whilst giving Cat a much needed cuddle

Treats for Mum (or Dad!) – hand cream, lip balm, comfy socks, soft loo roll were among the suggestions and all were invaluable to me for the week

And then. my 3 favourite suggestions, that brought a smile to my face and were in much demand during our week at GOSH:

Gin in a tin
A sense of humour
and a LOT of patience!

Courtesy of tesco.com

7 years to diagnosis

Searching for an answer