Harvey is now HOME!!!. .

Again, apologies for the overdue update. The past week has been a manic rush to get the house sorted because on Friday, Harvey came home. We have been waiting so long for that day to come and finally, it was our turn. We kept it quiet, we didn't want to tempt fate when really all I wanted to do was shout it from the roof top. A special thank you, (although thank you doesn't seem enough) to the amazing nurses at Sheffield Children's and especially on our ward/home M2 who made the day possible to bring Harvey home. In our eyes you will never be nurses to us but our friends and we love you all dearly. You have really helped us through the bad times and have enjoyed the good times with us. We miss not seeing you all daily and not being part of our lives like you have been but we will be visiting often and can't wait to see you all. 

Since Harvey's return home he has been happy and very smiley. We have fallen into routine with IVs, bag changes and general cares. I think the key is to not let an illness run your life, make it adjust to you!! And then show it the door and prove medicine wrong, which is what Harvey will do, just you wait and see. I kept telling the staff 'you watch, one day, he'll attend an appointment then come to visit, walking, talking and chewing on a chicken drumstick!!' Thing is, I say that but would probably freak if I saw Harvey walk towards me having a conversation.. Would be very strange :/  .. 

So, we are to visit hospital twice a week and have the community nurse (our Michelle) visit every 2 weeks. We have deliveries coming from all angles and mounts of supplies but hay, he's home and its all worth it. Here's a couple of snaps of the real supermini man who at present is doing good.. 

A Long Awaited Update! . .

Since its been a few weeks since either myself or Harvey have updated I thought we best had!! 

So, Harvey had his Gall Bladder out a couple of weeks ago and we hoped that the Gall Bladder was the cause of Harvey's pain. Unfortunately his pain is still an issue. Ive spoken to people who have had the same surgery and it took them a good 3 months to recover and feel normal again so I'm hoping this is the case for Harvey. On Monday I took Harvey off the fentanyl. It isn't an option to come home on it nor is it a good drug to be on long term as he would get dependant on it and I don't want that! Thursday was a very bad day and night for Harvey, his pain was really bad and because of that he only had minimal sleep due to the pain. Now that Harvey is off the fentanyl NCA we can start taking him out again, well when he's up to it, so yesterday we headed out into town with Sam and his mum Tracey. We had a lovely few hours walking round town, eating cake and also having a bit of time at the peace gardens watching all the children splashing around in the water fountains. Harvey really enjoyed the fountains and even got wet through. I'm hoping to get him out tomorrow but if he's a lazy bum and stays in bed late again like he did today then he won't be able to come out. We planned a trip to Blackpool today but Harvey didn't make it as he'd had a bad night and was still snoring when it was time to go. 

Health wise, there's been no changes with Harvey. He's just finishing his course of gut decontamination, he's also had to start on a couple more meds, one for carnitine deficiency and the other is because his losses are so acid so it's something to try help with that. In himself he's remained well, he's had no temperatures or infections. The only thing letting him down is the pain he's experiencing. 

Had a meeting with Harvey's consultant the other day and he's wants me to do Harvey's end of life plan. It's a very difficult thing to do let alone even think about. Who knows what the right answer is when it comes to something like that.. 

A couple of photos from peace gardens..

 

A few shots from today.. 

Update On Theatre And Recovery So Far . .

Harvey's mum here.. Firstly I'd like to apologise for not updating Harvey's blog after theatre. As you can imagine, things slip your mind easily when your mind is elsewhere. I have done a few little updates on his Facebook page though which is harvey'sjourney - let's get his story seen.

 So, Wednesday afternoon Harvey went to theatre to have his Gall Bladder removed. He went down at 1.30pm and came out at 6.30pm. The surgery itself went well. His surgeon managed to do the procedure key hole which is great. Harvey's Gall Bladder was too much bigger than they once thought. His surgeon had to drain his Gall Bladder a bit first as it was too big to grab. It was describes as very big, yellow and bad! Some of the bile leaked when it was drained so Harvey had to be washed out and also 3 doses of antibiotics post op to prevent any infection happening. Following surgery Harvey went to ICU for observation and also because he had an epidural for pain relief. The type of epidural Harvey had cant be managed on the wards, only ICU or HDU. He was very settled and comfortable once we got him in his room on ICU. Wednesday night he slept really well. Thursday the pain team came to see him, she couldn't believe how settled he was and pain free, she said she's not seen him like that for a long time. It was decided to keep the epidural in for another day, not to rush things and to leave him comfortable and settled. Harvey being Harvey was sitting up and playing all Thursday, because of this one of his incisions opened up so we had to squeeze it back together and put steri-strips on it. Harvey had a few little jiggles of pain Thursday but they soon passed and he was very chilled out again. On Friday after a review from pain team it was decided that it was time for the epidural to come out. They can only stay in for a maximum of 72 hours but because Harvey is vulnerable to infection his consultant wanted it out after 48 hours. Within half an hour of the epidural being stopped Harvey's pain was back! He had to have a background of fentanyl put on his pump as well as the bonus button he already had and the patch he wears. Once the epidural was out, Harvey got moved back to M2. Over the weekend his pain has been getting worse and now today it is back to where it was post op. I don't know what we're going to do about it really as Harvey is on an awful lot of pain relief which doesn't seem to make him completely comfortable or pain free for any great length of time. That's something that I'm going to have to discuss with the pain consultant and Harvey's  consultant tomorrow. It not fair on him to be in this much pain but at the same time I know there's not much more to offer now. I'm hoping the pain Harvey is experiencing now is post operative pain and not the intestinal failure. Only time will tell that really. His belly is distended and bruised so maybe has internal bruising too which is causing pain. Today 2 more of Harvey incisions have come open and are weeping. More risk of infection!! 

Tomorrow I think I need to have a chat with a few people and see where we go from here really. Obviously I want my boy well and comfortable and at the minute he's not. We need to have a plan of action, a way to move forward and let Harvey start to enjoy life again rather than make the most of what he can because of this stupid pain he's having. Once we have a plan, myself or Harvey will update his page.. I promise and won't let things get in the way this time.. 

My Nannie Kicking The Trans Pennine Walks But! . .

On Saturday 22nd June my Nannie did the Trans Pennine walk 50km (which actually turned out to be 55km). After no training and numerous people telling her she wouldn't do it or that she'd struggle.. Guess what, she did it!! She was dancing over the finish line and looked amazing. You did us all proud Nannie and more importantly, you did yourself proud. You set your mind to it and look at what you achieved from it. My Nannie did the walk to raise money for Sheffield Children's Hospital. I'm not sure in the total she raised yet but shed is great. Well done Nannie, extremely proud of you xxx

 

Theatre Day . .

Today is theatre day for the removal of my Gall Bladder. The afternoon has been made just for my operation because they don't know what they will find or how long it will take. Mummy got told that I'll probably be down all afternoon though. Hopefully this will be the source of my pain and the operation will have been for something rather than nothing. Past few days I have been ok, pain has been under control which has left me happy and smiley, even chuckling at times. I'm going to get mummy to update you all later as to how it all went because I'll be feeling groggy and sleepy. My pain consultant has requested for me to have an epidural for pain relief after surgery. This may not happen but he feels it'll be a good pain relief for me if it works and its one I've not had before. For the first night I will be going to HDU and if I'm good I will be moved back to the ward afterwards. I'm all set for theatre now so its just a waiting game to be called. Wish me luck, and I'll speak soon. 

Parted From My Neighbour, Back To My Cubicle . .

Dated 21/06/13 - wrote but didn't publish! 

After another early morning party with my mate Sam at 4am we both went back to sleep and slept until gone half 10 whilst our old dears we up and packing after a disturbed nights sleep!! Oops! They got told at about 10 that we were being moved back to M2 in about 2 hours time so they got on gathering everything up. Me and Sam woke once it was all sorted, cos we're good like that! The porter came for us at 12, Sam went first then 2 porters came back down for me and my stuff as there was quite a lot!! They got me back in my old room, I swiped the badges from the porters, checked them out then gave them back.. They said I'm like the security, checking everything's
legit! Haha. 

Mummy sorted the room out, it took around 2 hours but its done now. My pain is up today but that is because yesterday my pain was bad but I didn't have much of the fentanyl so until we can get on top of it again things will be a bit tougher. I'm sat in my bed playing with my blocks, and cards watching a bit of tv. Mummy's gone to get a press of my button because I'm very agitated and not happy. Saw the pain nurse this morning, she said I've got to have regular presses of my button to keep on top of the pain so hopefully things will get better soon. 

Not sure what we have planned for the weekend, we tend to just play it by ere now because we never know what kind of day I'll be having. 

It's strange not having Sam and his mummy around us now, kinda sad as I enjoyed seeing them and waving to them. She said she'll keep popping in to see me though :) 

Our Last Day Turned Out Not To Be Our Last . .

So, on my last update I said it was my last day on M3, it wasn't. M2 had to close for a week for cleaning but when it re-opened they got full up with patients from another ward that had to close for cleaning which is why i am still on M3. I don't mind though, they staff are lovely and very kind. They are getting wise to me though and know I either want their badges, glasses or to just raid their pockets! 

There hasn't been any changes to my cares or pain relief, we are waiting on my surgery now. Once I've had surgery then they will try and reduce and get rid of some of the pain reliefs, some of them have to be gradual and could takes weeks/months to be off completely. 

I've had a good couple of days where at times my pain has been ok and I've been a lot happier and smiley. Today though I've not been too good and since waking I've just been laying down and uncomfortable. Hopefully soon though, I will be a lot more comfortable. 

My Last Day On M3 . .

For the past week I have been on Ward M3 and I've really enjoyed it. The staff have been great, even the ones who haven't looked after me have been coming over to see me and play with either my Lego or Duplo with me. The nurse I have had the most is Maxine and I really like. Yesterday, mummy was showing her pictures of me doing different things (on the beach, dodgems, at TGI's) she liked looking at them. Mummy also showed her a picture and video of before this pain started, how happy and smily I was. Maxine started to get a bit teary, she said she's going to miss me and I'll miss them all on M3 too. I'm going to make sure mummy brings me down to see them again. Whilst I've been on here I've been in the bay because all the patients are neutropenic anyway so it is safe for me, it's been nice. I've had people around me, pick pocketed patients parents, had people come play with me and I also was able to  meet Sam (he's from M2 too but hadn't met him until now because I was in my room). Sam's nan has been playing with me all week, she was giving me cards and her comb to play with. All favourite things of mine. I also met his grandad yesterday, his pockets were empty!! 

Been using a heat pad to see if it helps with the pain I get, mummy thinks it might be but still trialling it to see. Yesterday I slept majority of the afternoon which worried mummy but she said she's hoping its just me catching up on sleep and not the usual thing it's means, I'm brewing something!! Mummy's not been taking photos recently because I've not been myself and doesn't want photos if me in pain but she did manage this one. I am wearing the heat pad in here which is why my belly looks square and it comes up to my arm pits!! 

Local People Holding Events To Help Me . .

A few weeks ago there was a football match that had been arranged by Chris Goodwin in New Mills, it was English V Dutch. They were sending buckets around at the event to raise money for me which I thought was lovely of them. They also had a bouncy castle and was doing food. Luckily on the day they had great weather too. The result of the match was 3-3 draw but the Dutch won on penalties. In total they raised £125 for me all to go towards a sensory garden. Thank you so much Chris for arranging the day and also to Neil and Sparky who played. You have never met me but put on an event to help and support me through my journey. I can never thank you enough for your kind gesture but could maybe thank you in person one day when I get home. Thank you once again xx

Sky Divers . .

Yesterday a group of 10 people, my Auntie Dee Dee being one of them did a 15000ft tandem skydive to raise money for Sheffield Children's Hospital and for myself towards a sensory garden. They all did amazing. I actually showed up at the event to support them and I'm so glad I did, the day with lovely, I was surrounded by great people, family and the sun was even shining. I really enjoyed being outside crawling around for the afternoon. 

People who did the jump were, Vikki Marshall aka Dee Dee, Katy Biggin, Shellie Hagan, Steph Goodwin, Shaun Bailey, Natalie Clark, Natalie Barber, Nicola Day, Shannon Bailey and Mark Baxter. You all did fantastic and to want to do something like that to help me is truly amazing so thank you so much. It was great to meet you all yesterday too and had a really nice day so thank you for that too.