We did it !!

The four of us completed the run along with Sarah &Tims dog Ash! It was harder than i thought but well worth every step. To have Ernie there with us happy and all smiles, made us see what we was doing was such a worthy cause to be raising money to thank the staff at cicu for everythng they did to make Ernie better!

We had a lovely day together along with grandparents, aunties & uncles. We want to thankyou all for everything you have all done for us during the time Ernie was in hospital, after and now for donating. We have got the best family and friends in the world!

On friday the 9th Of april Ernie had a normal day we had been to the cinema and then to watch ronnie at football training he went to bed at 8pm fine and happy. Jamie and i went to bed about 11pm Ernie woke not long after very unsettled and upset after a long night of him being this way he eventually went to sleep about 9am! A few hours later he woke again very upset and asthough he was in pain I picked him up to try and console him as I did so he had a febrille convulsion Jamie then rang 999 for an ambulance they took us into the leicester royal infirmary. Ernie was very unwell and blood test shown he had an infection the problem was to find where the infection was? They did a lumbapuncture to see if it was menegitus this is a horrible and painfull test where they place a long needle into the spine and take fluid out.  Thankfully these results came back clear so we didnt think he was seriously ill.

They moved Ernie to ward 9. Ernie slept well and woke up sunday seeming a little better he was very tired and slept most of the day. At 9pm Ernie started being very unsettled again and inpain he spent the whole night like this he also developed a rash on his foot, all he wanted to do was sleep but just couldnt. At 7am three doctors and two nurses came into the room and told me that ernie was very ill,his heart was beating faster than usual and that he had to be moved to the high dependancy ward i was in total shock and couldnt believe he had got so sick. By the time Jamie had arrived Ernie was being moved to the intensive care unit this is where the nightmare began. He was put in his own room as again they suspected it was menegitus. He was attached to lots of machines and had so many drugs being pumped into him. 

 All day monday and tuesday Ernie carried on being very sleepy with a high temperature the rash had developed all over his body and every now and then he cried an unusual  awful sounding cry. Some of the test results came back and it showed he had got a very yukky blood infection called GROUP A STREP SEPSIS. On wednesday doctors were concerned and unsure as Ernie was less awake his rash looked more angry and his feet and legs had got puffy with lots of blisters. The doctors explained infections this strong can take a long time to get better from even with antibiotics they but they wanted to do a CT SCAN of his brain just to check there was no other problem hiding as well as the blood infection. This showed that Ernie had a blood clot on his brain. This explained why Ernie had been so very poorly, sleepy and irritable. He had an ultrasound on his chest to which showed he had fluid around his lung. With all the different things he had wrong with him this showed us why he was getting better so slowly.

Friday morning Ernie was a little louder with his grumbling when he was moved he opened his eyes a little more. The doctors decided he needed an MRI SCAN of his brain to show if there had been any bleeds on the brain or any damage done. He dealt with everything so well and came straight off the breathing support. Thankfully this showed it hadnt blead we just had to wait to see how Ernie was in himself neurology wise.

On saturday Ernie was very sleepy Ronnie came to see him. Jamie and I both had cuddles with Ernie his rash looked alot calmer on his feet and in mouth. On sunday Ernie seemed a little better that evening he was well enough to be moved to the high dependancy unit. The mri scan showed he had gases and fluid behind his ears they think this is where the infection came from they decided to do a small operation to fit gromits, test also showed he had the flu and adnoids virus no woner he had been so ill. Ernie coped with the operation very well he showed some interest in food and ate a little he hed lots of cuddles with Jamie and I he seemed so relieved to have someone touching him without somebody putting a needle in him or messing with him he gave me a half smile which was the first time id seen him smile since friday 9th april when he first began being ill.

On tuesday Ernie seemed a little better so they moved him to ward 14 we thought great hes doing really well he spent one night there until the doctor came round and didnt like how he was breathing. He had an ultrasound and chest Xray this showed alot of fluid around his left lung it was making his lung collapse and pushing his heart to the right he had to go straight down to theartre and have a chest drain this is a tube that drains all of the fluid away this had to be in for six days.

Over the next few days Ernie got better and better on wednesday 28th april they discharged Ernie. He has to have two blood thining injections a day which i have learnt to do, two lots of antibiotics for the next fourteen days and lots of pain relief. It was so nice to have Ernie back home he was still very weak and not his happy self but he was home where he belongs. The hospital wanted to keep a close eye on him so we had to go back every other day for tests those visits got less and less as the weeks passed. We go twice a week now and a nurse comes out twice a week to see Ernie and put a new canula in his leg he is continuing to have two injections a day this will hopefully make the blood clot disperse.

Ernie is doing really well now he proved medics wrong and shocked all of his family and friends at what a little fighter he is and how much he has gone through and got through. Hes always been very special now hes our little miracle!

Thankyou for taking the time to read Ernies story we are doing this run to raise money for the childrens intensive care ward at the leicester royal infirmary. We cannot thank them enough for everything they did for Ernie and us whilst he was there. They worked miracles and saved his life.

The money raised will go towards the funding of improving parents facillities-

* Overnight accomodation rooms ~ as all parents only want to be a dressing gown distance away from their poorly child.

* Parents facilities ~ where parents can make a cup of tea and support each other away from the intensity of the ward.

* Private rooms ~ in the very worst case scenario, mums and dads can say goodbye with dignity, in a room designed to help them cope with the impending loss.

As we have had the unfortunate experiance of the intensive care ward it is very claustrophobic, crowded and noisy. Theres nowhere to rest,relax and have some privacy. We hope our money raised can make a difference towards improving this.

Thanks again

Laura, Jamie and Ernie xx xx xx

www.lemierresyndrome.com

http://www.wikipedia.org/wiki/groupastrep  

Wednesday 14th july

Hi all, Ernie had another mri scan on his brain two weeks ago I have spoken to Ernies consultant today and we are dissapointed to be told that the clot is stiil the same as it was three months ago. This means he has got to continue to have two injections a day for at least another six months. They have also said he has got to have physio as he is still unable to walk.

Friday 16th july

Hi all, something i'd forgot to include was that Ernie had  two blood transfusions whilst in hospital and platelets since this happend it has opened our eyes and made us realise not enough people give blood we have since started to give blood and are urging anyone that can to do so.

www.blood.co.uk

Wednesday 1st september

Hi everyone we just wanted to thank you all so much for your generous donations and lovely messages you have all writen. They have touched our hearts and made us see how much Ernie is loved by everyone! We hope the money raised can improve the parents facilities. Just four days to go and counting. I will update you all with how it went and photographic evidence we completed the run!

Thanks again love us xx xx xx

 

 

 

 

 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.