Like Minestrone Soup! . .

Well, the best my consultant could describe me today is like minestrone soup! He was explaining about my blood and that's how it got described, like the noodles in the soup. It was funny. Mummy and Clair had a good giggle about it whilst taking some noodles (blood) from me earlier. It's a good job I like my consultant. He's got a soft spot for me too, he lets me raid his pockets and has even given me loose change once because I like to play with coins.
It's been decided not to transfuse me as of yet because my bloods are up and down all of the time. The results from the bone marrow aspirated are being chased up to see how things look. My line is leaking again so I had to go for a lineography today, it looks ok. There's no holes in my line anywhere so just got to keep an eye on this. My consultant said it could be because my neutrophil count is low which is slowing the healing process down which could be why my other line fell out?! Who knows.. One of the consultants is meeting up with my consultant from Birmingham today or tomorrow to discuss things and my consultant here has emailed him to find out what plans are too. My stoma is doing my head in today, it keeps itching me. Mummy's not happy because I've pulled my bag off twice already!! Oops! She said I have to sit and think about my actions. Haha .. She tried to act like she was serious but burst out laughing at me.
We started watching grease earlier, mummy starting singing to me which was making me laugh, she soon stopped when the surgeon walked in. Need to thank him for shutting her up really! Hehe. Respiratory doctors haven't got the results from the sleep test yet so they said it'll be Monday now. I'm still now sleeping great so we've had one of my sleeping medicines increases to see if it helps. There's room for it to be increased again if needs be.
I've not been too bad today, bits of pain but nothing major. I've been playing with polystyrene with my teacher which was fun, I've been nicking people's badges, playing with my Lego and now I've got stickle bricks whilst watching Mr Maker.

Waiting For Results . .

Yesterday I had a day to rest after going to theatre on Monday. I was a bit uncomfortable with having all the fluid on board but was ok. I had a sleep in the afternoon which helped me to feel a bit better. I have to have a gut decontamination every 2 weeks now rather than monthly because they want to try reduce the risk of infections that come from my bowel pooling fluid and then leaking around my body. The decontamination is 3 different antibiotics going ideally into my stomach but I can't so it has to go into my pej (tube that goes into my bowel). One of them is every 4 hours for 3 days, one is 3 times a day and the other is twice daily both for 5 days.
Today I'm ok but keep getting bits of pain and upset at times. My sleep isn't very good, I am restless and wake up a few times which is effecting me in the day now. Last night the sleep unit had a cancellation for the more in depth sleep study so they came and set me up for it. I had stickers all over me, a probe on my toe, another around my foot, a strap around my chest and a carbon monoxide reader attached to some nasal canulas. We don't find out the results of that test straight away, it'll be a few days. My cough is starting up again now that my antibiotics stopped on Monday. I've been re fluxing a bit past few days too but that should hopefully settle down now that I'm back on my medication. It had to be stopped for 5 days before the impedance test but because they couldn't pass the probe they've decided to put me back on the medication. This morning I had my bloods done, they needed to check my haemoglobin because its been dropping. If its dropped further today then I have to have another blood transfusion. Hopefully it won't be bad blood that makes me naughty again ;). Mummy and a few nurses said it was Phil's (one of my nurses) blood and thats why i was rebelling! I'm not allowed his blood again! Pain team have just come to review me and have increased one of my pain medications to see if it helps with the discomfort. As for everything else we've just got to wait on all the results from the tests I've had done from the past 2 days and see if anything shows.
Had my Becky yesterday, I didn't get to see her much though because she was really busy but she made sure she came to see me for 10 minutes at the end of her shift. She's off now until Tuesday so I think she's going to miss me frisking her. I've got Jo today, she's really busy too though. I've just done a bid of playing with pasta and wooden blocks with the teacher for half an hour. She gone now because I was getting tired so now I'm going to watch me too! And then maybe have a lie down with my quilt in a bit if mummy will come snuggle with me.

Busy watching me too!

Extremely Puffy. .

I didn't have the best nights sleep last night. I woke up at 4.30 then again at 5.30 and was tossing and turning all night. Since waking up my whole body is really puffy but my face is getting puffier and puffier as the morning goes on. My eyes are looking bruised and my skin is really tight. Ive put on a kilo of fluid in less than 24 hours! I'm ok though, I'm sat in bed watching handy manny, playing with my cards and Lego. I'm getting clots of blood coming out my belly which keep blocking my button up, we think its the trauma from trying to pass the impedance probe. Doctors haven't been yet, it's my consultant going round today. I've got my Becky again today, and as soon as she came on shift I got my kiss and cuddle.

Settled Comfortably In His Bed. .

Harvey went to theatre at 4.30, he was a little trooper. He fell to sleep, I gave him a kiss on his head and left him in safe hands. Harvey got brought back to the ward at 7.45. I carried him from the trolley to his bed, he was a bit sore and stiff bless him. In theatre they managed to get a line in on second attempt, he has little cuts both sides of his neck where they have tried. He has a dressing on the bottom of his back where they did the bone marrow aspirate, and whilst there they took blood for all the blood tests they needed. They tried several times to pass the impedance test but couldn't which has caused trauma to his nose and down his throat. Since coming back he's been very settled and has just slept. Harvey's doing well from theatre and now has got his TPN back up and running. Hopefully his bloods haven't been affected too much from not having his TPN for 12 hours today. Thank you to all who have been asking about him and sending your love. Hopefully after a good nights sleep he'll be a bit better tomorrow

They Tell Me Theatre Tomorrow . . I Say Theatre Today!! . .

Well what a morning, I woke up at 4.30 and needed to have some more sleeping medicine to help me have a few more bourse sleep. I then woke up at 7.30, mummy was sorting me out when she noticed blood on my stoma belt. We soon then realised it was coming from my line! It was leaking quite a lot. Tracey came in with some of my medicine and saw it, she said we had to strip it down and see where it's leaking, only problem is though, when we took the dressing off, the line came out from the pressure of the fluids going in. Phil and Tracy steri - stripped the wound site and dressed it whilst mummy and a doctor were trying to canulate me because my blood sugars were already dropping. After 3 attempts I was the proud owner of a canula in my right hand. I had to have another canula at half 11 in case the first one tissues so after another 3 attempts I owned a canula in my left hand too! I'll be honest with you though, I didn't mind because I've had nurse after nurse hugging and kissing me. I didn't need numbing cream or cold spray for my canula's because I'm a brave boy.
After this mornings events, I am now going to theatre today, it's not clear exactly what I'm having done because it was planned for me to go tomorrow. Due to me being on the emergency list it's difficult to get all the people from the different teams to be available to do their tests so until I come back we're not sure although the line is priority so that will definitely be happening today.
The surgeons aren't sure why my line fell out like it did, it's not been pulled or caught. The disc that was supposed to be under my skin to hold my line in place had slipped out. My line is very important to me, without a line I won't live. Mummy is very protective of my line, she was very shocked this morning and had to go sit down for a bit in the parents room. Recently it's been nothing but problems with my line, this will be my 4th line in 7 months. Broviac lines can last up to 3 years before it needs changing, not mine!!
Besides all this happening this morning, I'm not too bad. Getting restless and times and don't really want to be touched. I'm getting a bit sleepy now, I might not be up to updating my blog to let all you lovely people know how I am after theatre so if I can't I'll ask mummy to do it for me.

Me and my lovely boxing gloves

Sunday is never the day of rest for me!!

I didn't sleep too well last night I woke up a few times because the room was boiling!! I've not really done a great deal today I've just been having cuddles with daddy Leigh and he gave me a bath as well. I enjoyed having a nice soak in my bubble bath and after I had to have my dressing changed on my broviac line. I wasn't very happy about it tho and it took three of them to hold me down and do it! Here's a picture of me chilling out in the bath after a long morning of sitting on daddy Leigh, pinching nurses badges and turning the telly over

Confirmed . .

We've been told this morning that I will be going to theatre Thursday on the emergency list. I'll be having scopes, impedance test and bone marrow aspiration. Been spiking a few temperatures since yesterday so I'm back on antibiotics and my line has been cultured.. Again!! My line is a risk for infection because its a foreign body and a bigger risk now that my immunity is low. This morning I've not been up to much really, not been myself. Bit sleepy and quiet today. My weight is up again and my face is puffy as a result of that. It never stopped me from frisking Becky when she came in to me this morning though. I also robbed respiratory Robs badge and bleep!! Rob said we're just to continue and leave me with oxygen as and when I need it until the sleep study and hopefully we'll get some answers then. I did FaceTime with my daddy Leigh earlier, I'm getting the hang of this FaceTime stuff now.. Kind of.. Watched honey 2 with mummy this morning and played with my Lego, money, bank card and Becky's torch. Just doing my school work now so best go and then I might just need a rest . .

More Tests And More Waiting Continued . .

So the Gastro reg has just come to talk to us. He's emailed my neurological consultant to ask him if with my neutrophils being low if it could indicate any kind of diagnosis neurologically wise. He's also spoke to the haematology team about starting on a medication to help prevent infections and get kick start my bone marrow to produce more cells to fight infection, they don't want to start him on it yet without possibly doing a lumber puncher. We are waiting for a phone call back to give us their decision. My Gastro consultant David is also keen to do some scopes and just have a look and make sure there's nothing new going on inside that could be causing problems. He doesn't want to take me to theatre just for that though so if its decided I need a lumber puncher too then I'll be going on Thursday to theatre for scopes, impedance probe passed, and a lumber puncher. If they decide not to do a lumber puncher then I will just have a very mild anaesthetic to knock me out whilst the pass the probe as its thicker than a NG tube that I used to have. My bloods from today have shown a drop in my haemoglobin again and a drop in my neutrophils. We was hoping that these problems were because of me being so poorly with a rare infection but as my numbers aren't improving they want to look into it to make sure there's nothing wrong with my bone marrow with it not producing enough cells to fight infections. I'm still at high risk of catching infections off people so will remain in my little room until its safe for me to come out.

Doing School Work . .

A Few More Tests And Lots More Waiting . .

Another restless night. Woke up at midnight and had to have more sleeping medicine to help me settle back to sleep. My oxygen requirements went up last night but have come down this morning. This morning I've not been too happy, not quite sure what I want. Mummy has settled me in my bed now though so I'm playing with my money and bank card. The Gastro team have been to see me, they want to do an impedance test to be certain as to whether I'm bringing things back up and aspirating, they are also going to contact haematology and see if I need to be on medication to help with my neutrophil count being low which puts me at risk of infection, they are going to contact Birmingham to see what the plan is with them with regards to transplantation, and they are also going to give me some medicine to coat my stomach to try stop the bleeding.
Teacher has just come to see me so best stop writing and playing with my coins and do some school work.
Respiratory came whilst I was doing school work. Didn't really know what to say/do so now I have to do another sleep test but a more detailed one. They don't know why I'm needing oxygen because when they did scopes my lungs looked good. Oxygen is one of the things that holds me back from getting out and about. It's very frustrating. There is a waiting list for the sleep test so I could be waiting 2-3weeks unless they get a cancellation which they said happens regularly sometimes and because I'm here it'll be day to come set the equipment up to do it last minute.

Bleeding Again . .

Started bleeding again today from my stomach. Doctor wanted to stop my diclofenac because that can cause bleeding although I started bleeding before I had that medicine. It's just another thing we have no answers for. I've been sleepier today, I've had moments of play but then got tired and had to lie down. I've needed oxygen all day because my breathing hasn't been too good. When mummy tried to turn it off this morning, my breathing went faster so went back on it.
My weight is up today which effects my breathing because its fluid that i put on and it pools in my tummy which then restricts my breathing. It's gastro and respiratory ward rounds tomorrow so maybe we'll know a bit more then and a plan.
My sisters and auntie face timed me earlier. Was nice to see them although the only view they got of me was the top of my head. I kept going close up to the screen. Taylor-Mae started crying, she said she wants me home now and wants to see me. I miss them all too. Ellie told me I have to start behaving and then I can go home to them. Hopefully after a good sleep I'll have a bit of a better day tomorrow. Sorry it's a short update but I'm falling to sleep. Night all x

Out Of Bed Playing With Toast . .

Surely today can't go much slower!! What a long day it's turning out to be, probably because I've been up since 6. Mummy opened the windows in the room last night because the silly works people have turned the heating on, I think they're trying to cook us!! These cubicles are either really cold or boiling hot, and now, because they've turned the heating on we are all moaning because its really sickly hot and everybody has headache! We woke up freezing this morning though because at some point the heating went off and with both windows open it was a bit arctic. I'd much prefer that though to how it is now!
So how am I? . . Well last night I was in oxygen again, I've managed the day without it today. Respiratory just want to wait and see how things go and if I'm still needing it by Thursday then i'll need to do another overnight trace and see how that one goes. If it turns out on the days I've had traces done I didn't require oxygen but need it intermittently I between they'll discuss seeing if its worth betting it put in at home for those times because they know there's some days/nights when I need it. Each day is different with me, it's another thing I like to do my way!!
My bloods today show that I'm not dry like I was yesterday so the extra fluid I had helped with that. The immunity markers in my bloods have fallen today and also my cell count so I'm either brewing another infection or its another problem we need to look into. Because its me though and I like to keep people guessing, they won't know just yet!
Been playing with my Lego today, also my wooden jigsaw, and doctors badges I can get hold of and I was sat at a table earlier playing with toast.
I've got Becky again today, she keeps coming in for cuddles and Salina is back too. Salina came in first thing this morning to see me, she's another one with a soft spot for me. She makes me smile. I've got a good bunch of ladies so can't really complain :).
I'm still getting pain today, been laying down a lot with mummy. We watched hop earlier. Now I'm going to go lay down for a little while because I'm a bit tired.

'Wait And See'

Another night needing oxygen! Respiratory doctors came too see me this morning and said they will wait and see I got with needing oxygen at the beginning if the week and if I do then they will do an overnight trace again. Nothing much happening with me at the minute apart from 'wait and see' what I do.
Auntie Dee Dee, Ellie and Taylor surprised us earlier, they came on the train to see us. It was a nice surprise. They all went out to play in the snow and I stayed with Becky for a bit. She came to hide out in my room and do her 'writing' for a while. Mummy said she's going to try get me out soon for the day as  I've not been out for 7 weeks. There's just a lot of stuff that needs to be sorted out, oxygen is one of them. My bloods aren't too bad today, my infection marker is slightly raised and I'm a bit dehydrated but my immunity ones have come up from what they were. It's not clear yet as to whether my immunity will be a problem now or if it was because I was so poorly. Time will tell. Pain is still a problem, it's not been nice today but I'm having all the pain relief I can as regular as I can. The consultant today said that soon they may want to do some more scopes to see if there's any changes or anything they can see that could be causing the pain. He said the time isn't right at the minute though with me needing oxygen and still recovering from my mystery illness. A speech and language therapist came to see me earlier, she was trying to find out if I was aspirating on saliva or gastric losses. She said its difficult because I'm one of my own and she doesn't quite understand or know what's happening. Oops! Another one confused by me!!
I'm still angry and nasty at times from one of the medications I had to take, mummy's hoping that after a couple of days I'll be back to me. Think it's the bruised eye I gave her! Sorry mummy.

I got my Duffy teddy. Mummy got me one and so did Dee Dee and nannie. I like them. They went to Trafford centre especially for them just for me :).

I See You :)

Boys Night . .

I had to do a overnight sleep trace on Thursday night to see how my oxygen levels are through the night. Mummy wasn't happy. That night I stayed in air all night but then last night I had to be in oxygen all night. We've told the doctors each night is different but because of the results from the study they aren't going to put home oxygen in at home now. It's ok though because my Michelle is going to sort it all out for me she's got a soft spot for me you see.
My blood results from Friday weren't as good as others, some of my levels had dropped, others had raised. The doctors aren't quite sure what's going on and have done further bloods to investigate it. I've also been having blood come out of my stomach into my bag, again they don't know why. Mummy said on Monday she is going to discuss everything with my team of doctors.
I finish my antibiotic tomorrow, mummy can't wait! It's made me be nasty at times, a bit like how steroids made me but not as bad! My other antibiotic got stopped yesterday too so we'll just have to wait and see how things go.
Got my daddy Leigh here with me. He's come to spend the time with me until tomorrow. Since he got here I've done nothing but bully him. He tried to sleep for a bit but I wouldn't let him. Like I'd let him sleep, just cos he's not slept since yesterday doesn't mean he can sleep whilst with me. He came in his big hat that mummy doesn't like, I like it though. I've been wearing it whilst in my bed. Mummy's gone home for the night to spend time with my auntie and sisters. Thank god, she was doing my head in! She best bring me something nice back though!! ;).
Best get to bed now, getting a bit late. Night night

The Song That Brings Back Memories..

East 17 - Stay Another Day, was playing on the radio on Christmas Day 2007 when Harvey was very poorly and being transferred to a different hospital to see if they knew what was wrong by ambulance whilst myself and Harvey's grandparents followed by car. Something about this song told me something was wrong and to hurry up. Glad we did because when we got to Harvey he was surrounded by the crash team, he had deteriorated during the journey. Some of the words, well almost all the words still relate to what Harvey is going through now.

Baby if you've got to go away
I don't think
I can take the pain
Won't you stay another day
Oh, don't leave me alone like this
Don't say it's the final kiss
Won't you stay another day

Don't you know
We've come too far now
Just to go
And try to throw it all away
Thought I heard you say
You love me
That your love was gonna be here to stay
I've only just begun
To know you
All I can say is
Won't you stay just one more day

Baby if you've got to go away
I don't think
I can take the pain
Won't you stay another day
Oh, don't leave me alone like this
Don't say it's the final kiss
Won't you stay another day

I touch your face while you are sleeping
And hold your hand
Don't understend what's going on
Good times we had return
To haunt me
Though it's for you
All that I do seem to be wrong

Baby if you've got to go away
I don't think
I can take the pain
Won't you stay another day
Oh, don't leave me alone like this
Don't say it's the final kiss
Won't you stay another day

Memories . .

Playing pool
On the harbour whilst on our holiday in Weymouth
Looking out the window on a boat trip in Poole
Sledging January 2011

With Olympic Torch . .

Party At My Bed . .

Ellie, Taylor-Mae, Trafford and myself x

Posing With My Sisters . .

Wishing We Knew What Was Happening . .

All your life it has been impossible to get a diagnosis because no body knows. Blood tests, biopsies, scopes, genetic testing, all showed nothing, yet we know there's something. Being one of a kind was something we used to laugh about, not having a diagnosis didn't effect anything, You was making your own milestones, doing things your way and doing well with only minor blips. Now, a diagnosis would mean the world. To know what is causing so many problems to my beautiful boy and why you are suffering. What would be even better though is a cure. To look at you playing with your lego, laughing smiling just so happy, it breaks my heart knowing what the future holds. Thinking this can't be true, youre so happy and look really good. But then when you show your ill, well, my heart breaks all over again, seeing that yes this is really happening. Why? Why my beautiful boy? They say things happen for a reason, I wish I knew why you deserve to suffer the way you do. Everything that has been thrown at you, you have coped so well and fought your way through smiling. Things have got a bit more serious now, you are having to fight a bit harder and sweetheart you are doing it so well. In the past year alone you have tackled a lot of hurdles and I am so so proud of you. Doctors don't know what's going on, if only you could tell me baby. If I could take away your pain I wouldn't wait a second, I would do anything to keep you smiling.
From the first second I laid my eyes on you and finally got to hold you all those 6 years ago, my heart melted. A mothers love is there with you whilst carrying you, protecting you whilst you grow in your mummy's tummy. That love is stronger in those first seconds of meeting you, it is then a mummy's duty to protect you and keep you safe. I always blamed myself for you being poorly, still crosses my mind from time to time. I think back, trying to see what I did wrong when you was in my tummy. I think all mummy's blame themselves if any harm comes to there precious child. I sit for hours now thinking, staring into nothing trying to see how things have got like they are now, so serious. It scares the life out of me but I am trying my best to be strong for you. To be by your side, giving you the love, and care you need to help you fight. I'm praying that one day soon you will not have to fight and can enjoy what so many take for granted.
The past couple of months haven't been your best. Pain, infections, blood transfusions, tests, scans, xrays, problems with your line, scopes, and over a dozen courses of antibiotics. It has really hit you hard, and made you very weak. You have come along way this past week and I can't tell you how relieved I am. You were so so poorly, you had me and everybody else who loves you very worried. Wish we had some answers though, your body still isn't behaving and we don't know why. I will get answers though sweetheart, one way or another.
I am trying to get things organised to get you home. You will be safer at home. You will get to be with your sisters again, they miss you terribly. Jo and Michelle are going to get everything we need to have you back in our living room playing with your lego and climbing up on the sofa to watch tv. We will get you there little man. I'm sure there's plenty of people that will be wanting to see you too. Your a big inspiration baby, you make a lot of people look at things in a new way.
I promise you Harvey, I will never let you down. I will be with you every step of the way through this nasty time you are having. Everyday we will make memories and when you get home there will be bigger memories to make. You are inspirational sweetheart, you keep smiling and flirting your way through and we will get there soon. I am so proud of you soldier.
All my love
Mummy
Xxxxx

More Energy But More Pain :(

Since being very poorly last week I am doing much better. Nobody knows what was wrong other than I had infection somewhere and the infection is still un-identified. Beginning of this week I was started on antibiotics again because I was showing signs of infection, they are thinking and hoping that its my chest and nowhere else. We got a couple of results back from my bronchoscopy, one for a serious illness common in children like me who are vulnerable was negative (phew, relief), another was to see if I'm aspirating. I am, still! They result was very high acidity levels so discussions are being held to see if more testing needs to be done or if they go ahead and do an operation to help this problem. My Gastro consultant wants to get things in place to get me home. They can't protect me very well here from getting poorly, my immunity is still very low. They put aprons and gloves on when they come into my room but he said its not going to keep me safe. There's a lot that needs to be sorted before I can go home and a lot of equipment is needed but we are going to get it all in place ready for when the window of opportunity comes. My respiratory team came earlier, I've got to do an overnight saturation trace tonight to see if my oxygen levels drop in the night, they know some days are worse than others and if my belly is distended with air or fluid this makes my breathing difficult and my oxygen requirements go up on those occasions. They know when I'm on oxygen I'm well and cope ok so they said we may have it plumed in at home anyway for when these things happen. Everything is all coming together, it all just takes time as there's so much involved.
The new antibiotic I started on Tuesday isn't agreeing with me very well, since being on it it's made me nasty and naughty. Steroids had the same effect on me but it was far much worse than it is now. This medicine is only for 5 days so I have to see how I am once I'm off it. The pharmacist said that mummy has to let her know because if it is the drug then they need to forward information on. They haven't used this drug much so any side effects need to be noted. Past few days my pain has gone up, struggle to get comfortable at times and I've been grinding my teeth and getting very frustrated. Hopefully it'll settle down again soon. My consultant said that pain is one of the many things we have to deal with the best we can and that I have to have whatever pain relief I need to keep me comfortable.
Mummy's hoping that soon I'll be able to get out and about a bit once my immunity comes up some more, then I might get to see some of this snow that's meant to be coming!

Chillin' watching lazy town

All In A days Work . .

I have touched up the doctor, pick pocketed my auntie, had the play worker in my bed, emptied her pockets, swiped my nurses glasses off, emptied her pockets, nicked badges off quite a few nurses (even ones that aren't looking after me), pulled the heater over and smoked my room out (twice), tried to climb out of bed, groped Becky, emptied her pockets, attempted to rip her handover sheet up, robbed her badge pens and everything else, and then sneaked a few kisses off her :). What a busy day I've had!
Mummy seems to think the blood I had on Friday was bad blood and making me a naughty monkey!! (Very funny though). Think it's fair to say that today I've been on top form. Started on a new antibiotics which can be a bad one so have to have my obs done 3 times whilst its going through. My immunity is still low so the antibiotic will help prevent contracting other virus's that could be unnoticed in most people but could make me quite poorly.
Anyway, time for bed, I'm pooped after my eventful day, it's been none stop!! Night everybody

Naughty Boy . .

Mummy said I'm naughty and that I've got to behave! I've spiked a temperature, got patchy changes on my chest, oxygen requirement has gone up and I've had to have my line cultured because I'm showing signs of infection somewhere. I'm back on antibiotics too. Tomorrow I've got to start on some more medication to treat this influenza that's been picked up on my chest secretions. Still waiting on other results from the tests, they can take up to 2 weeks. It's bed time now, time for my sleeps meds. Hopefully I'll get a quick minute with Becky though before I have to go sleep :)

Unstably Stable . .

So yesterday my energy levels were right up, today I'm not quite there. My pain is up today, I've needed quite a bit of pain relief and I'm still hurting. Blood has been draining into my bag from my belly and my blood pressure is high. Their not quite sure what is going on. One of my medications has been increased to try help with the bleeding, as for my blood pressure it's just a case of wait and see what happens. If it continues to rise Prof said it needs looking into. I've had bloods taken from my line for various things so just need to wait on results. Past couple of days my oxygen requirements have gone up, we're still waiting on the results to see if the secretions have shown anything. Prof mentioned home today, he said I'm stably unstable so home could still be an option. I'd need to come here twice a week to have a close eye kept on me. The team who look after me here haven't dealt with anybody as complex as me so struggle as to know what to do. They are learning from me. We've got to have another MDT meeting to discuss a few things with regards to home. Home oxygen might need to be considered and also pain relief. It's been mentioned about going back to theatre to have another look to see if anything else is happening that could be causing pain and bleeding. I'm going to rest a bit now so will update later if I get any results.

Very vocal..

So mummy says I'm too noisy today and I need to calm down because its effecting my breathing, me I shake my head at her saying no way!! So now she's put Charlie and the chocolate factory on and got in bed with me with the iPad making me look on Facebook and checking her bank account!! I'm making it hard work though because I keep flicking through the screens!! Haha. We can't quite decide where this new blood has come from because not only has it given me colour its given me loads of energy and made me very very noisy too! It's just my breathing thats a problem now, need to wait and see what the respiratory doctors say tomorrow. Things are defiantly improving now, mummy said I had a lot of people worried. Sorry, I just like to keep people on their toes that's all!! When it comes to me, these doctors have to really work for their money and I like to keep them guessing.. Mummy says that's naughty but I say no way, I do things MY WAY!
If things keep improving then I might get parole for a few hours next weekend and see some of this snow they're all talking about...

Writing my blog..

Footprints In The Sand

A life of love is a life well lived,
and we are the lucky ones who got chance to share this.
You may be an outlaw but you made it into everyone's hearts and not one of us will be the same for it.
Everything with a smile, a kiss and a hug.
We cherish it all, for better or worse.
By chance we are family, by choice we are friends.
Hearts entwined we find strength to face all life's challenges.
Hand in hand we step forward knowing we leave footprints in the sand.

Post Op..

I slept quite well last night, didnt wake up until 9ish today. Blood transfusion went through fine with no complications. Today I managed to stay awake longer before getting really tired. I've been a bit better today and a bit more vocal. I had visitors for the afternoon, nannie, Dee Dee, Ellie and Taylor came. Dee Dee looked after me for an hour whilst mummy and nannie nipped to sort a few things out. I had fun beating her up, can still manage that well!! Had to have my bloods done this morning, they want to keep a close eye on me. My results were better today and have made slight improvements unlike my haemoglobin that's right back up to normal limits now thanks to my new blood. Hopefully things will continue to improve and I'll soon be back to feeling brighter.

Harvey, the real super mini man.

Harvey managed fantastic in theatre with no complications and is now fast asleep in his bed back with his ladies. I always knew he was a strong little man, but today he just showed me how strong he really is. Well done chunky bum, so proud of you. Xxxx
Harvey has his new line in and they also got the secretions from his chest that they needed. I've had no feedback from surgeons or respiratory consultant and in this situation that is good. Now it's time for recovery. Harvey's got his TPN back up and running and the blood transfusion is going through nicely so fingers crossed tomorrow he has a bit more energy than what he's had recently. Hopefully now with the new line, TPN, and blood, Harvey will pick up in himself and also his bloods will start to improve again. Past 3 days his bloods haven't shown any significant changes, good or bad, but they have been falling slightly the wrong way!!
Thank you for all the kind words, love, hugs and prayers you have all be sending for Harvey. Whatever we all did for him worked and he got through theatre complication free. Your support means a lot to us and its overwhelming the amount of it you are all showing for Harvey. We are deeply touched. Thank you xxx

In recovery xxx

Come on soldier xx

So Harvey's in theatre, and I'll admit, I'm very scared. He's not exactly in the best health at the minute and his haemoglobin being low and his chest being bad doesn't go in his favour. I keep begging him to get better, telling him I'm so so proud of him and how brave he is. He really has been through the mill and instead of crying and complaining he just laughs and smiles his way through it. From this blog being published and everybody talking about it and sending him love tells me it was the right thing to do. I had my reserves about it, I'm usually a very private person when it comes to Harvey's health. It was my way of protecting him. Harvey's been the topic of idle gossip, people's stares and ignorance. He's a human being too with feelings and to know people could be so cruel terrified me. Not now. Harvey has done nothing but fight from the day he was born just to be here now. He has been through more than most do in a lifetime and he has fought off some terrible infections, rare bugs and a blood disorder that is rare to get in the first place and even rarer to get again, Harvey did! Harvey has no diagnosis and is unique. He has taught many people that life does not follow a book! Doctors have learnt things from Harvey and have even thanked him for it. I am proud of Harvey so why should I keep quiet, he is fighting a nasty never ending battle and never ever gives anything less than 100%. For the past 6 weeks he has been ill, which started with terrible pain. As things have come to a stand still, your bloods not improving nor getting much worse the question being asked is whether its infection or deterioration. I'm praying its infection, at least we can cure that. I sit for hours thinking how things got so bad and as serious as they are. I wish I knew baby.
Harvey may have a lot of medical problems but he is full of life and brightens any day up for not only me. He has a contagious smile and a chuckle that is full of happiness. He is loving and can sense when people are sad. He knows what he wants and is determined to get it. Harvey has touched a lot of hearts, I'm not surprised, he's amazing and an inspiration to all. I know all mums say that about their children but he is the bravest boy I know and I am so lucky to be a mummy to a boy like Harvey.
Harvey, lil soldier, I love you dearly and no one is as proud of you as I am. I will always be by your side holding you hand through this terrible journey. Soon sweetheart, things will get easier and the fight will be easier.
All my love
Mummy
Xxxxxx

Waiting for theatre

I didn't sleep as well last night as I have been doing I kept waking up because of my stupid pumps alarming!!! I'm currently on the waiting list for theatre so I'm not quiet sure when I'm going down. While I'm asleep they are going to take some samples from my chest to see why I'm coughing so much and why I'm not getting any better. I've only had a couple of crafty naps today when nobody is looking. I will keep you all updated when I've come out of theatre

Very sick

Got to go have a few test today, my consultant came to see us. My lungs have taken a hit and we need to check there's no bad infection there that is getting missed. I also need a scan on my kidneys. We're not fully sure as to what's going on although signs are there that I'm still sepsis. It's not clear as to whether its infection that's causing me to be unwell or deterioration. My breathing is fast and my chest is noisy, I'm working a bit harder with my breathing too. My consultant wants a line going in before weekend so that they have access that is guaranteed and I'm also having a blood transfusion today because I'm getting weak and exhausted. Hopefully the blood will pick me up a bit. Going to have to leave it there for now because I'm tired.
Thank you for all the support xx

Struggling....

Hi Harvey's auntie here, just  a quick update with Harvey..
Today he's really poorly, still undergoing investigation to figure out what's going on... Update on Harv will follow later today once Harvey's mummy has spoke to doctors/surgeons/consultants...

Just keep praying for him, both Harvey and Lian are strong but need your support guys xxxxx

Perked up

Wasn't feeling too great today, slept a bit and the rest of the time I was just laying down with my duvet. Doctors are struggling and still don't know what this nasty infection is. Consultant came earlier, he doesn't want to make too many changes at once so they've changed 1 antibiotic and keeping the other 2 as they are. He didn't want to do a blood transfusion as of yet, he just wants to keep a close eye on my hb and see how things go. There's been no improvements in my blood results today, things have stayed the same. Maybe tomorrow after this strong antibiotic I've started on we'll see improvement. I'm not well enough to go down to theatre for a broviac so another night with this silly line that keeps alarming my pumps every time I move!! Them pumps are going out window mummy said if they don't stop.
Mummy had words with me earlier, she said I've got to keep fighting and get through this. She said I'm very brave and she's extremely proud of me. She was upset so I put my arm around her and cuddled her. It made her more upset but she smiled.
Since 5 o'clock I've been sat up more and been more interactive. Becky tickled my feet for a bit and I even got her blowing raspberries on them! She wanted me to wave when she was leaving my room but I shock my head saying no so she came and tickled me and I got a kiss :). I know how to get what I want from these ladies :). Was sat playing with my Lego for about 45 mins laying down in between but now I'm tired so time for my duvet.

Too Exhausted.

Harvey isn't well today, fighting the infection is taking it out of him he's exhausted and is sleeping. Still no decisions as to a plan for line/or transfusion. Waiting for a consultant to review him.

Blood Results..

Despite my line coming out yesterday the doctors haven't seen the results they wanted from my bloods today. In the past when a patient has had a line infection and needed it removing because the antibiotics weren't clearing the infection completely, removing the line improved the bloods instantly. With me, this isn't what they are seeing which has confused them. My haemoglobin levels have dropped a lot today too so I'm being cross matched for a blood transfusion tomorrow. I've spiked another temperature today and my heart rate and breathing rate have increases too (due to temperature). This will change plans for theatre tomorrow if things don't improve. I've got to have more bloods taken soon to see what's going on because it seems the infection isn't quite clearing. A bug has come back again that's in my bloodstream so I'm changing to another antibiotic as of tomorrow. They know something isn't quite right because I've slept all afternoon and now spiked a temperature again. Doctor is here for blood so I get to have Becky in my bed :)

Thank You

I would like to take this time to thank you all for reading my page and for all the support you are giving myself and my family. We can't believe how much response we have received from my page already! My journey has touched the hearts of many, I have always been strong and pulled through whatever has been thrown my way, and now, having the support from you all will help that bit more.

Harvey xx

Struggling To Keep My Eyes Open

Extremely sleepy this morning, I've woken a few times but went back to sleep again not long after. Been woken up again to have my bloods done so thought I'd drop a quick line. 

Last night I had to have my blood sugars checked every 2 hours to make sure they are stable with my TPN. They went a bit high in the night but are ok again now. It's been a bit of a struggle so far with having my medicines because I only have 1 line for access. Doctor has just been and said that now my line is out they are hopeful that my bloods will return to normal and then get my new line tomorrow. Antibiotics will carry on for another 24 hours before stopping, lets just hope that the nasty bug has gone otherwise once the antibiotics finish it will be straight back. Feeling uncomfortable and tender, we're discussing some pain relief with the pharmacist so I'll be ok soon. 

Out Of Theatre And Recovering

Harvey's mummy here again, Harvey's a big groggy and uncomfortable from theatre to update you all. He came out of theatre at 6 and back to the ward for 6.30. He's now in bed resting. The removal of the line went well, he's now got a temporary line in his arm for a few days to see him through until he goes to theatre for a new broviac. Despite his chest being bad he managed the anaesthetic and is back on the ward rather than HDU as this was a possibility. He's needing a bit of oxygen and his breathing is a bit noisy but all in all he has done very well and I am extremely proud of him. I'm sure after a good nights sleep he will be doing better in morning.

In Theatre

Harvey's mummy here, Harvey went to theatre 10 mins ago. He was very brave and didn't cry at all. He went off to sleep straight away, no problems. Update when Harvey's is out of theatre and recovery and back up in his bed x

My Partner In Crime Archie

Still waiting..

Consent Form Signed..

A bit late updating today as its been quite a busy morning.. I was still fast asleep at 9.30 but was woken to find 6 people stood over me. It was the surgeons. They have made the decision that it is in my best interest for my line to come out because of the infection and that I'm still not quite right. Mummy's signed the consent, we've seen the anaesthetist, started the check list so now just waiting. They said it'll be around dinner time or just after. My line will be removed and the are going to canulate me as much as they can to give a good amount of access. I will be put on dextrose to maintain my sugar levels and will have to keep a real close eye on the levels, my sugar levels plummet really quickly. After 48 hours I will be going back down to theatre to have a new line put in.

In myself I'm quite sleepy this morning and chest is a bit noisy which is making me breathless. I've given quite a few smiles and I'm enjoying teasing my auntie dee dee with her car key!! Playing the waiting game now. Will update after theatre..

Another Canula Gone..

So after my Canula bothering me a bit towards end of the day, mummy pops out of my room and I get myself a little to ravelled up in my wires and out came my Canula! Oops.. Them things are a little too fragile for a boy like me!! Just waiting on the night doctor now to come do another one. Mummy's told them though, they can try twice and that's it. Been feeling better today, managed a bit of playing, smiles and even chuckles. Got a bit sleepy around 6, mummy said I've done too much today and that's why! (I laughed at her). There's very slight improvements in my blood results again today, something seems to be working. I've finished 3 of my 6 antibiotics so let's hope things carry on to go in the right direction.

Finding it funny after mummy called me a monkey for get wrapped up in my wires and pulling my Canula out..

Looking a little better today

Sorry I'm a bit late with the update today I decided to have a lie in and didn't wake up until 9 o'clock!! I'm feeling a little better today after I had 14 hours sleep and I'm hoping my blood has continued to improve. There is still no news as to when I'm having my line taken out it will probably be Monday now when all the doctors and surgeons are back at work. My cannula is still in because Becky did such a good job at wrapping me up so I haven't had chance to rip it out yet. I would also like to thank everyone who has viewed and shared my page. I can't believe I have so many views !! I already have 7,062 views as I write this coming from the uk where I am to as far as America, Australia, and India.

Broken Line.. Update

After long discussions the surgeons and medics have decided that taking my line out is for the best. If it wasnt for the infection they would have just repaired it but because the infection is serious its best to remove it. Initially it was said I'd go to theatre tonight, instead I have been canulated so I can have my pain relief and antibiotics and it'll be tomorrow or monday that I go when their's more staff around. I'm high risk for anesthetic because of my medical background and more so now because I'm unwell and have the infection in my chest too.   

Broken Line..

After mummy discovering a hole in my line earlier today, she later then found a hole in the other lumen of my line. A doctor tried 3 attempts of a canula today, she got one in, we set my paracetamol off and I decided to pull it out!
Tea time my temperature went up as well as my heart rate, breathing and blood pressure dropped. I haven't managed to have any of my antibiotics because I've had no access. Doctors are deciding whether removing my line would be for the best rather than to repair it as the infection I have is bad and resistant to many antibiotics. This infection is very serious. If my line comes out then for a few days I'll have a few canula's for access but won't be able to have my TPN which is another problem in itself. After just 5 minutes off TPN my blood sugars plummet which is dangerous, surgeons and medics are talking amongst one another to decide what percentage of glucose I will need via drip to maintain my hydration and blood sugars whilst I get well enough to go back to theatre for a new line. Its all still up in the air, just waiting on a final decision. If it goes ahead I'll be down in theatre in a few hours time..

Agitated and Distressed..

My morning started off with 3 of my lovely ladies coming in giving me morning kisses and cuddles before they finished their shift.. Since then I've been very agitated and getting spasms of pain. I can't seem to get comfortable, sitting up laying down tossing and turning. Keep getting tangled in all my wires, can't tell you how many times my mummy has had to un ravel them! Mummy was just about to give me my 12 o'clock medicines when she got squirted with water.. I've got a hole in my line! How? Who knows! Just waiting for these surgeons to come take a look and see what to do.
My breathing is quite fast today, my heart rate keeps going up too. Started retching last night, through the night and this morning. Seems to have settled a bit now. Had my bloods taken this morning, they want to monitor the levels daily until they improve and stay that way. Doctors came, didn't say a lot really, just to continue as we are. It wasn't my usual team of doctors so they never really know what to say or do with me being complicated. What can I say, I like to keep them guessing...

Before And After TPN

So this is me before I started on TPN when I wasn't absorbing my milk. I lost 3 kilos of weight in a matter of weeks and I wasn't growing in height at the rate expected..

Below is me several weeks after starting the TPN. Looking healthier and also taller!!

Happy Days..

Driving my car
On holiday last year August 2011
On the swing at Bakewell
Looking out the window for my taxi to school
With my Great Granny.. RIP granny, love and miss you millions xxxxxxx