Fun With Visitors . .

Still not sleeping well despite my medicine being increased. The weight I lost yesterday went back on today but that's usually the case recently. There's been no changes today, doctors wouldn't make changes on a weekend anyway unless its absolutely necessary. My bloods yesterday had dropped again, they really don't know what's going on. The results from my bone marrow still haven't come back so it'll be Monday now. Been out my bed playing again, didn't get back in until 3 ish. I've Had a few visitors, Nannie, Dee Dee and my sisters came first followed by Auntie Rachel. I completely emptied Nannie and Auntie Rachel's handbags which was fun, kept me busy for a few hours anyway. Charlotte (play specialist) came to play with my for a hour earlier until Leigh got here. Mummy's gone home for the night to spend some time with my sisters.

Playing Doctors With Shelia . .

Out My Bed Playing. .

First time out my bed playing in 2 months. Things seems to be going the right way for me at the minute. My weight is coming down, I'm getting my energy back, I'm playing more and alot happier. I've not needed oxygen all week now. Hopefully things will continue this way and then I can start getting out and about again.

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