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..