Hi everyone, I don't post on here often but thought I would share my events of last summer with fellow fitters... At the end of an extremely frantic June I had one last job in our busiest month, communal staircase in two blocks for one of the national house builders. With flats being handed over the next day I had no choice but to work late having had all manor of trades climbing over us all day.I finally got home around midnight, I left a couple of hours work for me and the lad in the morning knowing we'd get done before the new homeowners arrived. When I got home my missus was up with my 13mth old daughter who'd been a little poorly, off her food and a bit of a cough before but was now being sick and not even keeping water down. In spite of the hour I was concerned enough to ring nhs direct and ask their advice, and as I thought they would, they suggested taking her to a&e. My gf took her in at 1am with us both thinking she had a chest infection and that the hospital would get some fluids in her and have her home in no time. I was happy enough to go to work in the morning to finish off thinking the little one would be home before me. Just as I was finishing up my gf phoned to tell me to hurry up as Willow was being moved into high dependency, when I got to the hospital an hour later there was a team of about 15 surrounding her. They were trying desperately to get an iv line into her but she was by now so dehydrated her veins were collapsing, another hour or so later they decided to shave her head in an attempt to get in the veins in her head, with no success. All through this Willow was conscious and understandably distressed, the simple chest infection was now suspected to be septicaemia and we could tell from how concerned the doctors were that she was in trouble. Around lunch time they managed to get a line in, but she was having problems breathing, the decision was made to put her on a ventilator. We were sent out to get a coffee as it isn't a pleasant thing to witness. Our coffee was interrupted by the consultant who came to tell us that Willow was on a ventilator but her heart had stopped when she was given anaesthetic! The assumption was that she was so poorly the anaesthetic had pushed her over a cliff so to speak. A consultant was blue lighted down to Northampton from Leicester, he initially stabilised Willow and got pain meds in, along with fluids by going into her bones, he told us in no uncertain terms that she needed to be moved to Leicester intensive care unit if she was going to survive, but if she wasn't strong enough she may not even last the journey. Again we were asked to leave the hdu to allow them to work, a much needed ciggie and caffeine top up and we thought all was in hand. When I popped my head back in to hdu I saw my baby being given cpr, her heart had stopped again and they were in the process of inserting drains into her lungs. The fluids they were giving her were collecting in her lungs and drowning her, after I had been literally picked up from the floor they got her heart started again. It was a case of now or never, she had to be moved to Leicester. The consultant decided she would be better off at Glenfield Hospital in Leicester as the cardiac arrests may have caused kidney problems, Glenfield have an excellent dialysis set-up so he made the arrangements for her to go. We travelled up to be with her, assuming the worst was over, and were so relieved to see her on Picu, in an induced coma but still fighting. The following morning a consultant came to see us and said she was running tests, although the diagnosis had been septicaemia she said there was no evidence of this in the blood tests so she wanted to give Willow an echocardiograph. We were called in with the consultant and a senior cardiologist, they had found that Willows heart was only functioning at 1/5 of what it should be, her heart also showed signs of a condition called dilated cardiomyopathy. We were knocked sideways, two days earlier she had been at nursery, her usual cheeky self and then this, completely out of the blue. The days events were far from over though. That evening Willow crashed again, we found out afterwards that her heart stopped for 4 1/2 minutes. The consultant told us that without intervention she wouldn't last the night. They put willow on a life support system called ECMO, Glenfield being one of the very few hospitals to offer this and considered to be one of the best ecmo centres in the world. Ecmo is essentially an artificial heart and lung. We were told GOSH and the Freemans hospital had been made aware of Willow and that she would be monitored on Ecmo and if there was no improvement she would be moved with a view having a heart transplant. A week later and echoes were showing no improvement. We were told that her condition was actually myocarditis; a viral infection causing inflammation of the heart. Her immune system had fought the infection and attacked her heart in the process. The three cardiac arrests had also caused muscle damage. At this point a heart transplant was looking like her only hope. GOSH were advising Glenfield on bed availability and mentioned a similar case they had dealt with where a child had recovered full heart function after two weeks of Ecmo, the system giving the heart enough time to rest and recover. Glenfield decided Willow should stay on Ecmo as GOSH would do the same, and she was still very poorly and moving her could be extremely detrimental. Those weeks at her beside were the hardest of my life, she was pumped full of opiates, antibiotics, wires all over and two big tubes pumping blood in and out of her neck through the Ecmo and dialysis machines. Eventually we had a glimmer of light, an echo showed a marginal improvement in her heart function, not enough to say definitively she would get better but something to cling on to. Her next echo showed improvement again, against the odds she was fighting with all she had. Finally we had the news we were waiting for, her heart had recovered enough to come off Ecmo, although it is an amazing machine it has risks and her doctors were aware the blood thinners needed while on it could cause hemorrhaging at any time. A 4hr surgery took her off the ecmo machine but she was still on a ventilator and dialysis. For the first time in three weeks we were able to give our little girl a cuddle. Subsequent echos showed further improvement and she was taken off the ventilator and was breathing unaided. Homeward bound, or so we thought. Willow was moved onto a general Ward, conscious, going through cold-turkey but alive. Just 45 minutes later we had the next blow, Willows eyes started rolling in her head, we called a doctor in who suspected she was having a seizure. An emergency mri was done and we found out that Willow had had a massive stroke, presumably when her heart stopped for 4 minutes. That weekend she had over 25 seizures, the neurologists couldn't even tell us if she would have any brain damage and with her coming off of the opiates she was far from her normal self. Once the anti-epilepsy meds built up in her system the seizures stopped, a full week after she woke up we saw something we never thought we'd see again. A smile. Slight at first but with a little coaxing a full blown smile. Our little bubba was back! The last six months have seen us rebuilding our lives, back at work after a two month layoff, Willow eventually back in nursery, cheeky as ever and defying all of the doctors predictions to show almost no signs of her battle. We've been back and forth to hospital, only last week we were told that Willows heart was back to normal, her prognosis is good and we are now weaning her off some of the meds she's been on for six months. Without the ecmo machine I would've lost my little girl. Our story has made some of the national press, Google Willow Heart Attacks and something will come up, including our efforts to buy a new ecmo for Glenfield. In six months we've raised 9.5k of a 40k target for Heartlink Children's charity. They provide vial equipment to Glenfield as well as accommodation, tea, coffee, laundry facilities... I've jumped out of a plane, held a bootsale, made calendars and plainly begged. Not much I wouldn't do to try to repay Heartlink & y Glenfield hospital for giving me my little girl back. Www.Justgiving.com/willowsmountain Http://www.willowsmountain.org.uk feel free to chip in ;-) Iain
Debaser, No words mate can explain how I feel at this moment in time after reading your post.. Glad she made it and hope she continues to recover. Mario
Can't imagine what you've been through , that's my worst nightmare anything happening to the kids. Glad she's pulling through , she's one tough little' un.
wow really glad your little ones still with you and doing well and massive thumbs up for you raising money money for a new machine to help others, people dont realise how expensive but important these kind of areas of hospitals really are untill they been there, without people like yourself raising money for them ohters may not have the same ending to there story so again good on you and I wish you and your little one all the best for the future
Hi Iain so glad that your daughter has recovered from this, reading your story puts a lot of things into perspective. I have two sons, one not much older than Willow and the thought of going through something like that is unbearable. It's a great thing your doing and I would certainly like to chip in.
Happy for you buddy that your daughter managed to fight through the circumstances what she was under. I was highly touched by your story due to me having a baby girl on the way. Fair play to you and you wife, you stayed strong through the tough times. I wish you and your family the best mate, honestly!
Not nice seeing children poorly my eldest boy had leukaemia at 11 months old. He was doing well then in December 2012 on a routine check a lump was found on his testicle the cancer had come back he's had chemo again and also radiotherapy he's doing well now but not nice to see a child suffer like that.Hope all goes well Iain
One of the saddest stories I've heard in a long time , but glad things have turned out ok. My thoughts are with you . From a man that also has small children and another on the way I applaud your family's courage in what can only be described as a traumatic experience. Stay strong my friend.
Thanks for your replies guys, I must admit I read that back to myself last night and got choked up, surprisingly when it was all going on you become quite detached from it emotionally, people came to the hospital to support us and we ended up supporting them lol. Tom B, how's your lad now? I will stress that as painful as our story was we were very much the lucky ones; we saw other parents lose their children and one child in particular who had exactly the same condition as Willow at one week old is now urgently awaiting a heart transplant and is resident in GOSH. Truthfully, I think these things go on in the peripheral vision so to speak, we know it's happening to someone but until you're dropped into that situation you don't realise just how many people are going through similar things on a daily basis. Just to lighten the mood, I was scrolling through my FB newsfeed this morning and found the local paper had run a new story on our fundraising http://www.northamptonchron.co.uk/n...attacks-raise-10k-for-heart-machine-1-5846907 Thanks again for taking your time to read this, have a great weekend everyone Iain
Little lads alright Iain thanks going alder hey on Wednesday with him for his monthly check up but fingers crossed he's doing well thanks
wow debase - that's such an emotional & heroic story, amazing story of courage & sheer dogged inner fight by poor lil Willow. she sounds like she's going to be one incredible young woman one day. pretty amazing parents too! can't imagine what you must've been through, hell & back on too many occassions - "what doesnt kill you makes you sronger" Friedrich Nietzsche[FONT=Georgia, serif] [/FONT]
Hi guys, just thought I'd share a little update with you all, a couple of weeks ago my wife and I decided to have our first day out as a couple since Willow came out of hospital. It was the first time we've felt secure enough with her health to leave her with her nan for the whole day. Tickets were booked to see West Ham against Swansea and off we set... unbeknown to me my wife had managed to also get players lounge tickets from Kevin Nolan who very kindly met us after the game along with 9 of the teams match worn shirts, each signed by the player who wore them. We've since auctioned the shirts on a West Ham fan forum raising an incredible £4160!! The club also ran a feature on the auction and our fundraising in the programme for the Norwich game on tuesday night. Seeing our just giving total rise considerably today, knowing that this will help someone else have a positive outcome like us makes everything worth while. Have a great weekend all, and make sure you all give your little ones a big hug. regards iain
Well done mate £4160 for 9 West ham shirts is a miracle on its own seriously though we'll done on raising a good bit of money
You're not wrong mate, thankfully the auction coincided with a good run of form! Tbh, when we were given the shirts my mrs said "if we can get a grand I'd be chuffed" lesson there is don't let the wife dictate prices
