Travel Costs - Baby Sam - Crumlin

our little boy sam was diagnosed with a bowel obstruction when i was 31 weeks pregnant. due to crippling pain from kidney stones and a nephrostomy tube i went into natural labour at 36 weeks pregnant on 19th November 2013. he was in a high breech position so was delivered by emergency caesarean section. he was taken from me straight away to crumlin hospital where an xray confirmed he needed immediate emergency surgery, which was performed on him while he was only 8 hours old.

sam had multiple bowel atresias, his large bowel was under developed and blocked, his small bowel grossly swollen because of the blockage. he was unable to swallow amniotic fluid properly because of the blockage which in turn caused me to have polyhydramnios towards the end of pregnancy, a particularly uncomfortable condition whereby there was excessive amniotic fluid in the amniotic sac. Sam had to have a large portion of dead / under-developed bowel cut away / tapered and a stoma was placed very high up in his small bowel.

since this operation on 19th november 2013 he has been an in-patient in crumlin childrens' hospital in dublin. he receives nutrition via a tpn machine directly into his bloodstream via a broviac line in his chest wall, providing him with calories, fat, nutrients etc. he receives a tiny 10ml (2 teaspoons) of specialised formula once an hour through a tube in his nose, it took quite some time to even be able to give him this much, he started on only 1ml an hour!

the contents of his small bowel empty through the stoma on his abdomen into a bag. this bag is emptied and the contents measured regularly. these contents (his fecal matter/stools) are then fed in to his large bowel using an automated syringe which fills a tube into an entry in his lower abdomen called a mucus fistula. it is in this way that he is able to use his bowel and have dirty nappies. IF YOU WISH YOU CAN VIEW A SHORT VIDEO OF SAM WHERE I SHOW AND EXPLAIN THIS PROCESS, THE LINK IS IN THE UPDATES SECTION OF THIS PAGE.

his surgeons hope that "re-feeding" his stools in this way will help the large bowel develop and grow so that they can re-connect his bowels, which after his initital surgery were too disproportionate. we hope to find out if this reconnection surgery is possible in february. the surgeons will perform a contrast study using a dye and xray to see how much the large bowel has grown and if it is capable of functioning well.

if the surgeons can successfully re-connect his bowels we can start the process of trying to wean sam from the tpn machine and on to full feeds of formula. however as his bowel was already under developed at birth and had to be tapered and operated on he now has a short bowel, 65cm long, whereas a baby should have around 250cm of bowel. this is where the difficulty in weaning him from the tpn will arise, as he will not be able to absorb enough nutrients from formula/milk/food as a person should because the small bowel is shorter and can't absorb nutrients sufficiently. only time will tell if he can absorb enough nutrients through oral feeding alone to eventually come home without the need for a tpn machine.

we pray every day that he might be home by his 1st birthday, with the stoma reversed, no stool collection bag, his bowels reconnected and most importantly that he is able to thrive without continued medical intervention (tpn). he is putting on weight rapidly at the moment, thanks to the nutrients in the tpn machine, which by-pass the stomach and bowels.

the reason we have set up this gofundme account is to help with the travel expenses to and from the hospital to him every day. we live approximately 80 kilometres away in Portlaoise. Also when sam was born his little brother eli was only 11 months old (crazy i know!). we have tried several ways to cut the costs of travelling but every mode costs quite a lot. we tried driving in december which cost almost €700 for petrol and parking.

this month, january, i am travelling by train, tram and walking, which costs €410 for the month. as you can imagine these travel costs are crippling but completely necessary for me to see sam every day, help with his care, be there for doctors' rounds, establish and maintain a bond with sam, all while still needing to return home in the evenings to take care of sam's 13-month old brother Eli.

we tried staying in the ronald mcdonald house in crumlin (which is as expensive as travelling every day) but we were too far away from our families to have help looking after eli (a hospital room is not somewhere a 13-month-old can spend more than an hour without an inevitable tantrum!) so living at home and travelling so far every day actually strangely enough grants me more time with sam, as family members look after eli.

our typical week consists of me making my way up to Sam 6 mornings a week (Sunday - Friday) and returning home late in the evening to spend some time with Eli before bed. On Fridays I try to bring Eli with me so that he can get used to his brother and start to understand who he is, those are difficult days at the hospital, especially with Eli crawling (and trying his best to stand/walk) but it is definitely necessary for their relationship as brothers. My husband Shane stays overnight with Sam 2-3 nights a week after working in Dublin all day and he spends Saturday with him as well, so our weekends are pretty much spent apart.

as you can imagine our first Christmas & new year as a family of 4 was anything but ordinary, with myself and Shane taking it in turns to make sure that both Sam and Eli were with one of us during the "festive" period, we didn't have the heart to even put up a tree.

Sleeping on a mattress on the floor in Sam's room we spent Christmas as follows...

Christmas Eve evening until Christmas Day morning Shane was with Sam and I was at home in Portlaoise with Eli.

Christmas Day morning and afternoon I spent with Sam, and Shane stayed at home with Eli.

Shane stayed with Sam during the day of New Year's Eve.

I stayed with Sam New Year's Eve evening, until the clock struck midnight and through until New Year's Day morning.

The 4 of us spent some time as a family together in Sam's hospital room New year's day.

That was one of the most difficult few days as a family so far, being apart, literally one of us coming home from the hospital, handing over the car keys, and the other person heading straight up in their place. Hopefully next Christmas will be a family Christmas, all 4 of us together.

obviously we realise the financial situation that all families are faced with in the current economic climate, but any help we can get to lessen the financial cost of getting to sam every day would be a god send. we have created this gofundme account with an amount that reflects around 12 months travel costs, as we hope sam will be home by the end of the year, although we don't know when he will be able to come home.

if the donations exceed our needs (when sam comes home) any excess received we will in turn donate to crumlin hospital's charities. thank you to anyone who has taken the time to read our story, and god bless anyone who can make a donation...

from sam & eli's mum, theresa xxx
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Theresa Mulhall 
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