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we flitted between derriford hospital in plymouth and Bristol Childrens Hospital, depending on the level of care he needed.
he's a 28 weeker so we spent a while in NICU, we did come home for 5 days when he was 3 months old but i dont really count that lol, he was rushed into hospital after that 5 days immediately ventillated and that was the beginning of our nightmare. he would stop breathing at least once an hour and couldn't self resolve, he had all the test under the sun which clearly showed his apnoea was reflux related, started reflux therapy and he was able to be extubated but continued to have regular apnoea, unfortunately eventually one of these episodes caused brain damage leaving him with Spastic Quadraplegia, luckily he's the 3-5% of spastic quads with no mental retardation. we struggled with his weight until at 6 months old we were transferred back to bristol where his weight was a shocking 7lbs, he was rushed to theatre and put on TPN made nil by mouth to give his digestive system a break...for the first time ever he was pain free and able to grow, he struggled with infection and had 4 central lines in 3 months lol but eventually he was strong enough to have a fundoplication and gastrostomy, this stopped the apnoea but was replaced with extreme bradycardia, whilst asleep his Heart Rate would (and still does) sit between 40 and 60 causing huge amounts of panic to everyone, he was taken to PICU repeatedly but always sent back as he miraculously manages to maintain his SATs. his heart is structurally normal so there is no physical reason for him to do it. he struggled on with his weight for months and months, never tolerating his feeds, never having prolonged periods of growth and was at 14 months old, developmentally around 3-4 months of age. less than 6 months after his surgery his Fundo came undone and his Gastrostomy needed removing due to chronic infection. that was a year ago, we spent the next 6 months or so waiting for the old peg site to heal rigourously trating the infection but to no avail, eventually i lost faith in the hospital and the care he was getting and arranged for him to be discharged. this meant moving house and eventualy resulted in us living in temp accomodation (where we still are currently) jacob still wont grow at 2.5 he's hovering between 8.5 and 9kg on NG feeds still with a hole in his stomach where his old peg was. the old site leaks badly the skin surrounding it is broken down blistered and bleeding and yet i still cant get a surgery date for him to have it fixed, regular coedine seems to be doing the trick at the moment and luckily he still sleeps 20ish hours a day but.........he is the happiest most amazing little thing ive ever met.
everyone is sure he has some sort of odd genetic condition, im not convince, personally i feel he has been hugely let down by the NHS and many of his current problems could have been prevented but there is no denying that he probably has too many issues to put down purely to his prematurity after all 28 weeks although early is by no means extremely prem (he was actually 28+6 so almost 29 weeks). sorry that was a bit of a waffle, even what ive written doesnt really cover it all but i could probably go on all night.
carrie x
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What caused the infection in the gastromony?
We were warned of this when we had Euans fitted but they said it was very rare!
Why have they not closed the whole yet are they waiting for him to become more stronger or is that what they do?
Couldnt imagine having to move home like that so really your world was turned upside down and shaken around for that whole period and without having a partner was it any harder for you?

Wow you really do have a story to tell and its so nice to see even after all that time you are home at last.
Did you sleep at the hospital or was it a case of at first and then you had to let go and leave him at night?
When Euans in we always stop but i can imagine after all that time you would have to leave him at night.

Such a story and so many questions Blush
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he has autoimmune issues which is the reason the infection got out of hand, but the actual infection is only Staphlecoccus (Sp??) its a bacteria which lives on everyones skin and can infect wounds, usually a simple course or oral antibiotics should cure it but not in jacobs case. it was left so long because we were transferred back to plymouth fairly quickly following the surgery and the surgeons in plymouth wont touch him and the surgeons in Bristol very much have an out of sight out of mind mentality, usually these stoma sites should be surgically repaired within 6 weeks but they cant be repaired whilst infection is present so because surgery wasnt a short term option the only communication with bristol was via telephone and email and although i dont know exactly what was said i assume the severity of the situation was never understood. we recently had a outpatients appointment with our surgeon (the first since his op in Jul 08) who seemingly had a bit of a shock when he saw the stoma but it is now so infected that he will need to have the hole area cored out to ensure the infection is gone, packed and left to heal from the inside and then jacob will need some pretty extensive plastic surgery to cover what is left, only then will they be able to even think about inserting a new gastrostomy and performing another fundoplication (spread of infection risks etc). anyway, that appointment was january, i called the surgeons secretary last week and he called me back with many excuses equating to the fact that he'd forgotten to put jacob on a list for surgery and his absolutely absurd suggestion was to try inserting another tube into the old stoma site (which has had nothing in it for 49 weeks now) to try and stop the leak, but because he didnt have time to do it soon, it should be done in plymouth without jacob having a general anesthetic.... i actually had to LOL at him, needless to say it wont be happening, jacobs consultant was off all week (as the all usually are over the holidays) but on monday i will be requesting that jacobs surgical care be transferred to another surgeon at another hospital.

as for hospital stays i stayed for the first 12 months overnight until the behaviour of my other son began to get progressively worse at which time i realised that i had to try and divide my attention differently so i would spend all day at the hospital and evenings at home with logan, unless we were in bristol which is 2hrs away and they wont accomodate siblings (i once went 4 months only seeing him twice). there was ronald macdonald accomodation but generally when jacob is sick enough to be in bristol it is not the environment for logan to be in.

life was very difficult being on my own not from a support point of view but had i had a partner i would have had someone to care for logan, as it was i would have to plan every week where he would go and who he would stay with, my family arent the most supportive but between quite a few of them i managed, logan has certainly suffered emotionally more than anyone else in all of this but since we've all been home together he has improved dramatically, he has a brilliant relationship with jacob and im sure for the first time in his life he feels secure.
carrie x

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