Thursday, 28 February 2013

Tough Decisions To Make . .

Recently I've said I only see your consultant when it's bad news Harvey and once again that was the case. After talking to him today he's made us have to think about things that no parent would ever want to. I'm your mummy Harvey, I'm here to protect love and guide you, not think about loosing you. I must admit Harvey, I had to try really hard not to break down today. I need to remain strong for you and your sisters through this tough time. It's been over a year now that your condition started to deteriorate and what an emotional time that has been but you have remained strong and fought through it all. You are a fighter baby, and you make me so proud. You have touched a lot of hearts Harvey and have so many people wanting to help you and give you the best life possible. A few weeks back you were so poorly, you scared the life out of me. I felt helpless that I couldn't cure what was making you so weak. Your still recovering from that and it's left your immunity low which is a worry. In time doctors are hoping it will improve, I am too! It's always a risk that you could get that ill again which is what your consultant was saying. He wants us to put a plan in place for if you ever took really ill, how far we want to go with treatment. A transplant has been mentioned again too. I'm so scared for you Harvey but I will do right by you. I will never let you suffer nor will I push you too far. No one knows what time we have with you, weeks, months, years but whatever time we have will we make great memories. Life limited condition!! I wish I knew what this condition was that is causing so much heartache. It's times like these that I'm glad your oblivious to what is happening. I prefer it that way because I wouldn't want you to be upset. Your smiles make a bad day good again. As long as your happy Harvey and smiling, we can tackle an hurdle along the way.

You've been doing well recently, stably unstable is what they've called it and because of that they said we could manage you at home. We've been putting things in place for a while now, it all takes time. Home life could do you good, we can only wait and see. Being a family again though, that's what will help you the most. Having the love and care around you from your whole family. Make a wish foundation come today, they loved you instantly. You have an infectious smile and the best personality. You couldn't tell them a wish so me and your daddy did. They are going to make that wish come true and make it so special for you and your sisters. I can't wait. To see all 3 of you together again and enjoying yourselves will make this past year better.

I think I'm going to have to stop here, it's hard writing through tears and I don't want to cry tears of sadness, not yet. Right now you are here, safe in my arms and I'm thankful of that. You've come a long way Harvey, conquered a lot and been through more than most do in a life time and can still smile at the end of it. Your an inspirational boy and I am proud to call you my son. I love you dearly Harvey and whilst your still fighting, I will too.
Forever by your side,
All my love

Wednesday, 27 February 2013

Possibly Starting To Show What's Been Brewing . .

For about a week now things haven't been quite right. At times I'd get really upset or agitated. My oxygen requirements have also gone up especially over night. We've been trying the days without oxygen but by tea time I'd be breathing faster and my heart rate would be up so had to be put back in a small amount of oxygen to settle things down. The past 2 days despite being on oxygen my breathing rate has still be raised though. Over the days I've been weak and struggled to pull myself up to sitting position from laying down, I've needed help most of the time to do it. My nights have been restless and I have been really clammy. The blood results from Monday were pretty much the same as the previous week, the neutrophil levels are still low and don't seem to be improving like expected. My HB has dropped again which explains my paleness and possibly being weak. My weight is all over the place, I gained 350 grams in fluid yesterday. Until I decide to show whatever's going on properly its difficult for doctors to treat me for anything even though they know something is going on. Up to now all I have wanted to do is lie down with my quilt and play with mummy's cards out her purse. The doctor said we're just to wait and see how things go.
My friend Archie is back in and I can't even see him. I've not seen him since December. Mummy said he's looking good though.

Monday, 25 February 2013

Frisking One Of My Ladies . .

So as you all know I like to frisk my ladies, and here I am in action. What you won't see is the part where I got her down on the floor haha

Another Eventful Weekend . .

Mummy went home for a few hours to see my sisters so I had, in turn, a few different ladies in my room sitting with me until mummy got back. Taylor ended up in hospital Wednesday because she was really ill and they were concerned about her so wanted to keep an eye on her. Luckily she started to improve Thursday so they let her home. She's feeling much better now.
I still haven't been quite myself recently, wasn't happy at all and was getting angry and hitting. I had the dentist come to see me Thursday, I have wobbly teeth!! My new teeth have already started to come through so at least I won't have big gaps when they fall out.

Woke up but again wasn't quite right, my face was puffy and I just wanted mummy all the time. Spent most of the morning having cuddles. Mummy then had to leave me to go pick my sisters up so I had Fiona, Clair and Lauren sit with me in turn. When they all got back I had more cuddles with mummy before Dee Dee got here. Not long after Daddy turned up too. We went and did a bit of late night shopping at Meadowhall to get some presents for mummy's birthday. It was a bit of a late night for me, I didn't get to sleep until gone 9! It was fun though.
I needed oxygen all day Saturday because I have gone a bit chesty. My breathing was a bit faster and harder so I have just needed a little oxygen just to keep me settled.

Didn't wake up too good again today, was a bit upset and just wanted mummy with me. Today hasn't been my best day of the weekend, at times I have been unsettled and very upset. Still been in the small amount of oxygen to help keep me settled. This morning we put my bed down so I could get out and have a play for a few hours. Daddy, Dee Dee, Ellie and Taylor turned up just before dinner. It's mummy's birthday tomorrow so we were celebrating it today. Mummy opened her presents and cards with my sisters. We had planned to go out for a meal late afternoon so before that I had a splash in the bath. What fun I had in there! the best part was soaking Dee Dee's socks! I love my baths. Once I was dressed it was time to go, we met daddy, Gaz and Holly there. I had a good time out, I robbed mummy's purse of all her cards, had Dee Dees, Daddy's and Gaz's car keys and then decided something was missing so had a route through Gaz's pocket and pulled out his bank card too! Dee Dee, Ellie and Taylor had made mummy a cake so after our meal the Tgi staff brought out her cake and sang their traditional song. It was time to head back because I needed my medicines and new TPN bag. I had a play in my bed for a while whilst my IV's were getting sorted and watched a bit of dancing on ice too! It turned out to be another late night for me. It takes it out of me even just going out for a few hours, I get really tired. Hopefully that might improve in time though, if not though at least I'll get to lay down and have snuggles.

Sunday, 24 February 2013

Branded . .

Dee Dee got a tattoo yesterday. It's a cartoon of me dressed as a soldier with a superman badge on his uniform with the letter HMJ. So, the soldier uniform is because ever since I was a baby and have had a constant fight to be where I am today mummy has always called me her soldier, the superman badge is because I am the real super mini man! And the letters HMJ are for my blog, Harvey Marshall's Journey.

This is the tattoo of me making Dee Dee's ankle look good!!

Wednesday, 20 February 2013

Today Is The Day . .

The day has come that we start to use my home TPN pump. I've had this pump since October but because the nurses weren't trained to use these pumps we had to wait before we can use it, and now we can. I have a bodyguard 2channel infusion pump which allows me to have my TPN and my replacement fluids through one very small pump. The battery life is 16 hours off charge which gives me more freedom because the ones I'm using now only have 1hour off charge and I have to carry 2 pumps which are quite big and bulky. Once the backpack for my new pump arrives, getting out and about will be quicker and easier because the pump and fluid bags will be secured into the backpack.. They'll be no stopping me then!!
Had visitors last night. Daddy, Gaz and Holly came to see me and boy did I have fun.. Between them I ended up with a bed full of pocket and handbag contents. I had that much stuff in my bed I couldn't decide what to play with or kept loosing what I wanted at times. It was really nice to see them, haven't met Holly before but she was lovely.. And I got to frisk her! Hehe. Gaz and Holly bought me a puffer fish teddy from Nemo (a few nurses have eyed it up), a Cars puzzle and some Cars cards. The puzzle was Gaz's way of buttering me up so I went easy on him for not visiting me, but it was the bank card, car key and phone that let him off! Haha. They all stayed for a few hours, but had to leave because it was getting late. Wasn't happy when they left but they said they'll come again soon so I'll look forward to that =)
Bloods yesterday were just the same really, few numbers have dropped and others remained the same so basically I'm still neutropenic and my HB is still up and down. There's no changes being made, just got to carry on and hope that in time things will improve. Yesterday I spend some time in the snoozalin with Lizzy and Gill, hopefully I'll get chance to go in there today, I like my time in there with my ladies. I slept better last night, think it was all the excitement from having visitors. I needed oxygen at the beginning of the night but early hours this morning I decided wearing my nasal canula's on top of my nose was so much cooler and the oxygen blasting my eyelids felt better! So I remained in air for the rest of my sleep. We haven't got any plans for today so I'm going to get mummy to see if there's any good films on we could watch later.

A picture of my new pump that does the same job as the two blue ones I carry with my now..

Monday, 18 February 2013

Fun Weekend For Papas Birthday . .

Despite not being 100% myself I have had a very busy and fun weekend and yes, I finally got to go out in my new wheels! Saturday morning I had snuggles with mummy whilst waiting for my visitors to arrive. Daddy got here first followed by Dee Dee and Ellie. Taylor couldn't come see me because she was very poorly. Love you Taylor xx.
Saturday afternoon it was just me and daddy for a few hours whilst the women went shopping for presents. After a bit of pump training with Clare I was able to go out for fresh air just us boys. We told mummy we were going for a walk in the park.. Well technically we did, we walked through the park to get to the pub! Haha. After a drink and bag of crisps we headed back to meet the women from the car who were none of the wiser.. Dee Dee got me a massive balloon from Meadowhall, i love it! Went for a ride in the car after that because mummy wanted to go see how Taylor was, I couldn't go see her because of my immunity so I went for a drive with daddy to go see big Kev. Haven't seen him in a while. Then it was just me and mummy again so after getting sorted back in my room we had and watched tv for a hour before bed.
Sunday was just as busy. It was daddy's birthday. Had morning cuddles with mummy before the clang arrived. Despite it being daddy birthday I enjoyed opening all of the presents and the wrappers to his chocolate!! It was great fun. At one point I had his new shoes, 4 cans of gin and tonic, deodorant, chocolate, socks, mummy and dee dee all in my bed!! Whilst they all went for a drink in the canteen I went down to the snoozalin room with Sarah and Gill where I made a birthday card for daddy. I had so much fun in there. Then it was time for TGI's! I love that place. I can't eat the food but loved played with the salt and pepper pots. They all came to sing to daddy, couldn't make my mind up about that. Sat and stared at them for a few seconds, and then with daddy's help joined in with the clapping to the song. When I got back to my bed it took me a while to decide what to watch on tv so was messing with that for a while. I was shattered and fell asleep at 7!
Had another bad nights sleep, worse than the night before. We're not sure what's causing me to be so restless and jumpy so I'm having a one of blood test to check my steroid levels. There's been no real changes with anything really, just continue as we are and wait to see if anything starts to show (infection) with the way I've been over the past week. I'm still neutropenic, and my HB, platelets and white cell count is still up and down, again we don't know why. Doctors are hoping that in time things will improve but we'll just have to wait and see.

Friday, 15 February 2013

Unsettled And Upset . .

So the past couple of days haven't been my best. I've been very unsettled and have cried quite a lot. Yesterday I fell to sleep twice which isn't like me at all unless I'm unwell! Mummy thinks I'm brewing something because of how I've been. Today I've been more unsettled than yesterday, fell to sleep again as well. I had a restless nights sleep, just tossing and turning hopefully tonight will be better. I've been going down to the snoozlin room everyday, yesterday with Sarah and Fiona, today with dizzy Lizzy. I had a bath this afternoon which was fun, stayed in an hour playing with the shower head and came out all shrivelled up!!
There's nothing new happening from the doctors side of things. Plan is to carry on over the weekend and if I spike a temperature I have to have my line cultured and start on antibiotics as usual. My blood pressure was really low last night, don't know why but do we ever know why I do these things?!
Got my sisters coming this weekend, oh and daddy Leigh and Dee Dee. Another busy weekend for me. I might actually get to try out my new wheels..
I'm just having a bit of a chill out in my bed watching tv and having a cuddle with Mickey in between playing with my Lego..

Wednesday, 13 February 2013

My Crazy Sisters Making Us Laugh The Other Day . .

Catch Up Of Past Few Days . .

Hi all, sorry its been a few days. Nothing has really changed with me. I'm still in a cubicle because i'm neutropenic, my haemoglobin is up and down all the time, my albumin levels (what prevents puffiness) are lower than should be but stable. My weight is up but that's the excessive amount of fluid I have!! My pain is up at the minute but we can only try manage it with the usual pain relief which isn't quite hitting it completely. Been quieter than usual and laying down a lot, hopefully its just a little blip and nothing more. The past couple of days I haven't been out anywhere, yesterday I had dizzy Lizzy sit with me for the day which was fun. She's a crazy one!! Today I've been down to the snoozalin room with dizzy Lizzy and Jodie, I had a great time in there emptying every box I could find. I've also played with Clair for a little bit and Becky popped her head round for a quick kiss and cuddle. This afternoon I was out my bed playing for a little while with my Lego and getting really tanged up in my bags and wires! Now I'm just sat in my bed watching tv with my Lego.
Got a new set of wheels yesterday, my old ones were broken! Can't wait to sit in it and test it out. Mummy had to go back to our house yesterday to swap the old wheels for the new so whilst she was there she did some cleaning and threw out old bits of feeding supplies I no longer need at present to make room for the x amount of supplies we'll be receiving. We've been told that we'll be surprised as to how much will be needed!! Floor to ceiling of boxes!! Mummy said she's going to get some storage draws to make it easier to access and store away properly. We've also got to allow room for another fridge for my TPN as it has to be stored alone, then there's things like dressings, giving set, syringes, sharps bin, needles, gauze, spare pump, saline fluids, glucose.. The list goes on!!! I had my scales delivered last week because I have to be weighed daily, just waiting for some weighing scales to weigh my urine output and losses. I'm on a strict fluid balance so everything that goes in and comes out has to be recorded hourly. Mummy will be doing all this at home for me. I'll be coming back to the hospital twice a week for appointments and blood tests and I also have to pick my IV medications weekly.
Dee Dees had a banner made to advertise the fundraiser night, I'm famous!! Sounds like the event could be a success and lots of people have donated raffle prizes which is amazing. Thanks everybody. It's not long until the event, it'll be a good night hope your all looking forward to it those that are attending.

Monday, 11 February 2013

A Weekend With My Family . .

Weekend has been lovely. Spent the whole weekend with my family. Saturday was baking with my sisters and yesterday Auntie Dee Dee, Ellie and Taylor came to the hospital for a little while. They was coming for the day but because of the weather mummy didn't want them to get stuck so we all headed back and went out for a Sunday roast, daddy Leigh met us there too. It was a lovely afternoon. Leigh brought me and mummy back, we went Castleton way which was covered in snow! Dee Dees car is rubbish in the snow and almost got us stuck!
Seen the doctors this morning, no new changes or nothing really being done, just carry on as we are. Had my bloods taken so just waiting on results of those. Teacher came to see me but I wasn't really up to much and didn't want to play so she rubbed my back for a while an then left me to watch tv. I've got my wooden shapes out at the minute and also watching jake and the Netherlands pirates.
Mummy got a phone call earlier, got my new wheels coming tomorrow!! Can't wait to sit in it. My chair has been broken for a while now so it'll be nice to sit in a chair that doesn't rock me backwards and forwards. Mummy said she just needs to sort out getting the rain cover and cosy toes now and it'll be sorted. The backpack for my home pump should hopefully be coming on Thursday which will then allow us to start using the bodyguard pump which is a lot smaller than what we cart around with us now. It'll allow me to be a lot more mobile and get out and about easier. Everything's being sorted to get all home supplies in place, it jus takes a bit of time. Soon though I'll be able to spend nights at home. Mummy has been pricing up new beds for me too. She said they're really expensive but the one I have at home just won't be suitable with me getting bigger now. Ideally we need an electric one with high sides so I can't escape and also that is padded. Mummy's seen one that's just what I need and showed me the picture. I don't know why because I wasn't really interested!! Any way, going to see what films are on now.

Saturday, 9 February 2013

Out Again Today But With A Few Problems . .

Been out for the afternoon again today. Auntie Dee Dee came to help mummy get all my bits sorted to get me out. I don't travel light these days you know!
The car journey wasn't too bad although I keep having absences where I stare into nothing and don't respond for a few seconds to anything or anybody. When we got to Dee Dees house I played with my Lego for a little while, and routed through the kitchen cupboards. Auntie Mandy came over to visit which was nice. She was playing with me in the cupboards. Daddy Leigh came over too, I was playing with bank cards and Dee Dees car key with him. Leigh and Ellie went to pick a few bits up from the shop so whilst we waited for them I washed up with Dee Dee.. Well she washed the pots.. I washed her bank card, put a plastic bowl on her head and then climbed into the sink!! It was great fun. After that we did some baking. Phil (nurse) likes our cupcakes so we made some for him and the rest of the night staff. Uncle Simon came back from golfing not long after, I was on the floor playing with jars of spices so he joined in along with Taylor. Had such a good time playing with those. Was nice to see Mandy and Simon, I don't get to see them very often. It was time to head back, it was getting late so mummy and Dee Dee loaded the car up before saying our goodbyes and strapping me in to go.
Whilst out today, my blood sugars were playing up. They dropped quite low about an hour after arriving at Dee Dee's so mummy had to phone Clair (my nurse today) to let her know what was happening. Because it was low I had to have my sugars done every half an hour to make sure it didn't drop any lower. Luckily it came back up though so I was able to stay out a little longer. Usually my sugars run ok whilst I'm on my TPN but the past few days it has been quite a bit lower, we don't know why. It's another thing that will need to be discussed with my team on Monday mummy said. For a while things were ok but not for long, my temperature went up! We was already getting sorted to head back at that point though so didn't need to leave any earlier. When I got back I had to have a few blood tests done because of my temperature, blood sugar and these absences and also get checked by a doctor. Mummy also noticed that I am covered in bruises down my legs and on my feet so I've had my clotting checked too! My clotting was low on Thursday and now I'm covered in all these bruises which is what happens. It's ok though, it'll probably just be a bit if vitamin k I need. I had blood taken from line so whilst it was being accessed enough blood was taken to do a full MOT of the usual things as well.
Mummy has told the doctors that she isn't happy taking me out again until things are better. She thinks its too much for me and with all these problems that happened today it's obvious I'm not coping with it well. She's hoping my consultant may come see us on Monday so all issues can be talked about and maybe have a backup plan in place in case things like this keep happening.

Fun With Dee Dee . .

Wednesday, 6 February 2013

First Day Out In A While . .

We didn't get to go out yesterday as planned because of the snow so instead I played for a bit and went in the snoozalin for an hour, wasn't really up to much yesterday though. Mummy put my bed down for me to play out of my bed but I just wanted to lie down or have snuggles. Been quieter and looking a bit paler the past 2 days. I went back into oxygen Monday night too. Yesterday it was decided by my respiratory consultant that I'll be having oxygen at home. We met with Julie (home oxygen nurse) yesterday who discussed a few things with mummy about it all. They are coming to put the oxygen in at home tomorrow. Yesterday all things that would be needed at home for me was discussed and because I need so much medical equipment at home there's issues with who will fund it and where we will need to get things from. There's also a possibility that a couple of the machines may need to be bought. Hopefully Friday we might have a few answers about things.
Managed to get out today. Had to escape off the ward quickly because I'm still at risk but that wasn't a problem! Went to see my Nannie and Taylor for while before everybody else got back. I stayed with Nannie for a bit whilst mummy and Taylor went to pick Ellie up from school, mummy told her that my pump wouldn't alarm but it did!! She said it was saying downstream collision, it was actually downstream occlusion! Bless her, she's a bit daft like that!!
Dee Dee came back from work and I had a few cuddles with her and then nicked her car key and was playing with that for a while before daddy Leigh turned up. I didn't get to see grandad today though, he had to work late.
My sugars were running a bit low whilst I was at Nannie's, we had to wait a bit to see if they'd come up because mummy didn't want to risk travelling back in case something happened. In the end we had to because it was getting late. I'm ok though, got in my bed and sat playing with a few bits of Lego and my hospital card. My Becky came in to see me when she came on shift, had a quick cuddle and kiss. I've got Rachel tonight, she played Lego with me for a bit and a chat with me before going getting a bit of work done.
Well I'm going to get some sleep now because I'm am shattered. Night night x

Monday, 4 February 2013

Catch Up With A Mention Of Home . .

Hi everybody, thought I'd better drop a line because I didn't get round to it yesterday. Weekend was a quiet and stable one. I managed to behave myself for a whole weekend without doing anything naughty or any of the nurses or doctors breaking me!! Saturday as you know I had a few visitors which was lovely and i got 2 new pairs of pyjamas off Auntie Dee Dee, then Leigh stayed with me for the night. Sunday I had a bath and then spent the rest of the day playing with Charlotte (play specialist), Salina and Will (nurses). Mummy came back at tea time, we had lots of cuddles and played with the new Lego that my sisters bought for me. We did FaceTime with the Marshall household which was nice but Taylor got upset again.
My sleeping still isn't good, it's taking me a long time to be able to fall asleep and even then I'm not fully settling then waking early hours needing more medication to settle me back off. In myself I'm doing really good. My face isn't looking as puffy and my energy is coming back. Doctors seemed pretty pleased with me this morning. My bupa nurse phoned today and is coming in this week to get things sorted with mummy for home. Doctors said I'm as good as I'm going to get so they want to try get me home pretty soon. The bone marrow they took for testing came back today, it's all CLEAR yay! That means I don't have a problem with my bone marrow and there's no malignant cells.
Been quite busy this morning, Ive had my dressing changed, stoma bag changed, was out of bed playing with my new Lego and money. Salina let me play with her I.D card for a bit and an hour later came in with my very own badge with my name on. I haven't put it down since. I've been in the snoozalin room with Sarah and Gill and of course my I.D card had to come too. I'm now sat in my bed watch mr blooms nursery with my Lego, I.D card and mummy. Feeling a bit tired so not playing at the minute.
Things seem to be going the right way for me at the minute and I'm getting back to my usual self. I'm laughing playing and vocalising more now. Mummy said I look really well and I'm doing great.

A few photos from yesterday and some from today playing with my new badge . .