Elliot's 1st Birthday!
2nd September we had an awesome day Elliot turned 1 and had no idea what the day would entail, so as all his favourite people started arriving at our house I think he began to realise that it was a special day, it was great to have both sides of our family under the same roof again, the last time that happened was Matt's surprise 30th birthday.
The fun unravelled with Elliot's Great Aunt, Gran, Grandpa, Great Grandad, Great cousins, Nana and Grandad, aunt and uncle, Great Grandma and Great Granddad. So many gifts and the best birthday cake a boy could ask for which I stayed up baking till midnight the night before.
Elliot's 1st Holiday!
We packed up and drove down to St Ives on the 6th September for two weeks in the sun lots of good food and playing in the sand with Nana and Granddad. Meeting us there was an added bonus, Elliot had never seen the sea or sand before and he loved it. He wasn't a big fan when he ate some of it though. The sun did his bruises the world of good and he even started taking a few steps.
Factor 8 round 5 and 6
Despite all the care Elliot received from 4 grown ups, Elliot had a bleed. I noticed on the 15th September when we went to The Firehouse Restaurant and Elliot was uncomfortable and very sad throughout the meal, so I put him straight to bed. The next day I was picking Elliot up and he didn't want to bend his legs and cried if I put him down, so I changed his bum and noticed a large hot swelling on his right bum cheek it looked super sore, so I got a second opinion from my mum and we all decided to take him to A&E at Truro Hospital.
A long wait ensued and even though the medical professionals were told about Elliot's condition and given all the info we had to wait 3 hours. This was so stressful because we arrived at 5:30pm and didn't leave till after 9pm! It felt like the nurses were scared to treat him because the condition is so rare they kept putting it off, I got asked if the jab was to be delivered in to the muscle, NOOOoo it's a blood product and must go in his vein. Despite they wait he had his jab and we went back to the apartment for a good kip.
My Birthday 17th September
We had a lovely early morning I was spoilt and Elliot looked a lot more comfortable after his jab all the bumps on his head had healed over night (Factor 8 is magic), we had an appointment with the hospital for 10:30am to check his bleed and also give him more Factor if needed. Well I checked his bum before we left and the swelling looked a little bit bigger, so he needed another dose. We were met with confusion at the Haematology desk as they did not know we had an appointment, despite this, the head of Haemo saw us straight away even though he did not treat children, he was great but was disappointed that the hospital had not been informed about our holiday from Manchester Hospital and that we had to wait so long the night before as we should of been treated straight away. He said that Elliot needed more Factor and instead of a dose of 250 he was to be given 500.We took Elliot upstairs to the Paediatrics department, and even though the nurses were all lovely again they made us wait until past 2pm before they would attempt anything. We were asked if he would like numbing cream and we said yes he hasn't had it before but if it takes the sting out of it then great, in the end they didn't even use the sites they added the cream too!. We were also told once they had the cannula in they would take blood to check his inhibitor levels and give him the Factor in the same one........Well that did not happen either, they took the blood after stabbing him in the elbow wrist and feet and then they left us for another hour before trying to get another vein to deliver the factor 8. This was really frustrating Elliot was so upset, I even shed a tear in the end. We left the hospital after 3pm and tried to recover what was left of my birthday, good to know that Elliot had so much factor in his system.
It made me realise how amazing the Manchester Children's Haemo unit is, the Nurses are so great, they want to see you and get it done and dusted within 15mins tops because they understand that bleeds need to be sorted ASAP and that it causes less stress for Elliot.
I am thankful to Truro but I do feel like they need a bit more knowledge and training.
Elliot stopped trying to walk for about a week after that bleed but he is up and about now and nothing stops him, the holiday was great apart from that blip.
Haemo Friends
We met up with a lovely couple called Andy and Cathy through my dad paying respects for Andy's relatives who died in the war and are buried in Belgium, my dad spoke to Andy over social media and when he went on his motorbike trip laid a cross down for him. Andy has Severe Haemo A just like Elliot and is in his 60's his daughter is a carrier and his Grandson Rocco has Severe Haemo A they live at the Lizard peninsula. We met up for a meal and had a lovely time asked lots of questions and made some new friends!
