10 And A Half Weeks From Discharge And Still Home . .

I think it's safe to say that we have really settled into home life again now. We have routine which consists of me sleeping until 6/7 then getting downstairs and falling back to sleep until midday, Once awake I then demand to go out!! 

Being home has been great, I don't like even going back to hospital for check ups now, I give mummy a hard time until she gets me back in the car, then I'm nice again! Since discharge I've not had any re-admissions (2 near misses though) and only have to go for fortnightly check ups. I still have weekly bloods just to make sure nothing is going wrong in between check ups. 

The past month I've been having problems with urine infections again. Klebsiella keeps growing which can be a nasty bug if left untreated. I'm now on my second course of IV antibiotics in 1 month for this infection which just won't go away. I'm awaiting a scan of my kidneys to see if I have any kind of damage and to look at whether my bladder is emptying properly and to also see if there's any kind of reflux or anything that could be causing all these urine infections. Other than UTI infections I've been free of any other infections. My consultant amongst others can't believe how well I'm doing at home and also how I've actually managed to stay at home since discharge. 

I get 2 hours off my TPN now which is a massive improvement. Earlier in the year, 3 minutes off TPN was long enough for my blood sugars to drop!! Time off my TPN will help my liver so its great i can manage the time off. At the minute though, I'm not managing to maintain my sugars, could be the infection, we don't know. Hopefully once I'm off antibiotics my sugars will be good again.

We've been up to al sorts since getting home, a break in Legoland, trips to Trafford centre, seeing family, shopping, meals, cinema,

days out.. List is endless (can't remember a lot of it because we've done that much).

Everyday I'm smiling, family life is great. Mummy says I'm cheeky naughty, she's probably right!! 

On Wednesday I'm starting back at school!! I'm going to be doing 1 afternoon a week up until Christmas, then we are going to reassess and see if this can be increased. I love school, it's been so long since I was there. We went to visit last week, all the teachers couldn't believe how much I've grown!! It's amazing what happens when your fed and finally getting nutrition.. Mummy isn't best pleased though as I've had to have a whole new wardrobe and shoes too!! 

I'm sorry it's been so long since I updated, it's just been great being home! I've put a few pics on, see what I've been upto and how happy I've been.. 

Harvey's Wish . .

Harvey got granted a wish from 'make a wish foundation' his wish, (which I had to make for him) was to go to Legoland in Windsor. So, last week was the time but the morning we were due to go, Harvey had to attend an appointment with his consultant. Although Harvey in himself was ok, his bloods were bad, that bad his consultant wanted him admitted immediately and started on 2 antibiotics and also to have treatment for his clotting  (in his blood) as it was out which put him at great risk of having a big bleed!! As you can imagine, we was gutted. We was all packed and set to go once his appointment was done. I tried so hard to convince his consultant I was able to look after Harvey and administer his antibiotics but it didn't work.. We was sent to the ward. Our appointment was at 10.30, it got to 3pm and I was still trying to get Harvey out. By 5pm I was talking to another consultant, he explained their concerns but I felt I could manage Harvey so I self discharged him with antibiotics.. Bet your now thinking I'm silly.. Well I know Harvey and i also know when he's ill before anybody else and before his bloods show it. There was nothing to suggest that I wasn't able to look after him at home, after all, the nurses wouldn't be doing anything different for Harvey than what I could at home. By 6.30 he was discharged and in the car on the way to Legoland. I did doubt myself briefly a few times about if my decision was the right one, deep down I knew it was. I'm so glad I got him out the hospital though, he had a great time at Legoland and was laughing and smiling all the time. Within 5 minutes of being in the hotel suite he trashed the place.. We had to rearrange everything and also move everything out of sight into the bathroom and shut the door so he couldn't get it all! We spent all of Friday in the park itself, Harvey loved going on rides and the atmosphere. Saturday we had to travel back but we spent the day in the park again before we left. We had to stop off at hospital on the way home for Harvey to been seen and have a dose of antibiotics before being able to go home for the night and then back to hospital on the Sunday, Tuesday, Wednesday and Thursday. Turned out, Harvey had Klebsiella in his urine again.. It's a nasty bug and can cause potential life threatening problems if untreated. Harvey showed no signs in himself that he was unwell, it was only his bloods that showed he was ill. He's a little monkey for that.. It's quite scary really. He's just finished his 7 days of antibiotics so we has to do a repeat urine test today to check the bug has gone. Fingers crossed.. I'm hopeful it has cleared up, Harvey's not been sleepy in the day and his pain has settled down again so my feeling is that he's recovering well. He was almost back in hospital Tuesday night, his potassium result came back that it was dangerously high. Doctors wanted it repeating before rushing him in to the nearest hospital. I wasn't clear as to why there was a big urgency to repeat the test so I asked.. Well, if potassium is high then it puts pressure on the heart and the muscle. it works too hard/faster or something and similar effects if potassium is low. The muscle doesn't work well enough. I now know and will not question that again!!  Luckily though, the second sample showed his potassium levels were perfect and needed no treatment. 

Harvey is able to enjoy the bank holiday weekend and not have to attend hospital until Thursday which he'll be happy about. 

Apologies for not updating as regular as what we should, things have been more manic at home than what they were in hospital. I'll make sure his blog is updated more regularly. 

A few pictures from Legoland and Harvey being Harvey!! 

A Month On . .

Well, it's been almost a month to the day when I was discharged and things have been good. Think a few people thought I'd of ended up back in hospital with minor blips but no, nothing. Even the prof was surprised at how well I am doing and on my first appointment was happy go 2 weeks until he wanted to see me again which will be this Thursday coming. A few of my blood results from last week were slipping but we've not had to make any changes to my cares or TPN so see what my bloods this week show. 

Since discharge I've been full of smiles, giggles and cheekiness. People only have to look at me or walk into the living room and I'm in full belly chuckle laughter! It's been great being back home, I think the time felt right for me. 

I've had a few off days, but hay, that's going to happen right?! Past couple of days my pain has been up, and on Saturday I was bleeding from my stomach. I've also got a nasty cough which Is causing me to retch. I've needed oxygen a couple of times intermittently in the day because my breathing rate when up and I was working a bit harder to breath. This settled after a few hours and I was able to have a few hours without oxygen. 

In the month I've been home it's been spent mainly taking it easy and resting but in between we've been to Trafford centre where I rode the carousel, Stockport for shopping and costa (quite a number of times), tesco's (far too much!!), the pub for tea and breakfast once too, Buxton park, cinema to watch monsters university, Sheffield twice weekly to take bloods and pick up medication, visited my M2 family and friends, and went for a ride to Krispy Kreme with my dad and sisters yesterday. I've probably done more but just can't remember it all! 

My sleep hasn't been too bad recently, the first week I was waking early hours but after more sleep meds I managed another few hours. I've needed it a couple of times since but not much. The first week of being home was spent sorting out, putting things in place and getting used to being home. It didn't take long because now it just feels like we've never been away. 

I do miss my extended family, quite alot actually and even mummy said its not the same not being around them but at least I still get to visit them and take them cakes :). I love them all loads and can't thank them enough for everything they did for me, and my mummy during our stay. They weren't just nurses, they became our friends and without them well, who knows what position we'd be in. Love you all millions xxxx

I guess it's time I got to bed before mummy starts telling me off!! I've added a few photos of home life - 1 month on . .

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