Thursday 6th November 2008 - I was in a happy, smiley mood when mummy and daddy came this morning. My nurse told them how I'd slept all night apart from when he took my blood pressure (I don't like that because it's like someone's squeezing my leg very tightly!) and temperature. Mummy and daddy said I didn't like being restricted so they weren't too surprised I'd woken up while he was doing my obs. He also told them that I fidget a lot and would soon be doing forward rolls!
I wasn't very hungry this morning so didn't have much breakfast. Instead I played with mummy and daddy and had some cuddles. Mummy made me laugh lots by playing peek-a-boo and daddy made me laugh by blowing raspberries on my feet and pretending they smelled yukky. I started getting a bit hungry after a while so mummy got my milk ready while daddy cuddled me. I couldn't wait to get hold of my bottle and took 50mls! But I think I drank it a bit too quickly because I then burped and some milk came out with my wind... all over daddy's clean top! Luckily he had another clean one in the cupboard in my room so he quickly got changed while mummy sorted me out. Although I was sick it wasn't the same sort of sick, where I go into a kind of trance, so mummy and daddy weren't too worried. It didn't bother me at all and I smiled and giggled at mummy while she changed me.
When I'd been all cleaned up my doctors came in to see me again. Even though I know most of them now I still don't smile at them and give them 'eyes' when they come near me. It's very funny sometimes because they try to make me smile but I know their game now so I just frown and give them even more 'eyes'. Then comes the inevitable prodding and poking and they still insist on putting a cold round thing on my chest! I like trying to pull it out of their ears and have mastered the art of pulling the tube really hard and fast... You'd think they'd have given up trying it on every morning now but they're a determined bunch.
They told mummy and daddy that I was still looking well and they were waiting for my INR levels before they could decide whether or not I could go to theatre They had a big debate about my weight too as I'm still not getting any bigger and am the same as I was yesterday. Mummy and daddy said they wanted to wait for me to have my hickman line out before they start messing about with my feeds again as I'd not been sick with my trance for a couple of days now and was definitely keeping more milk in my tummy. My doctors agreed to keep me as I am for now but said they still don't know why I'm not growing and would monitor it closely. They told mummy and daddy they would scan my heart again just to make sure it was still working properly.
When they left daddy said he was feeling very sleepy (daddy does like his sleep) so he laid down on his bed for a little bit. While daddy was asleep, me and mummy played some fun games but I kept laughing! So mummy kept saying "Shhhhhh! Daddy's asleep!" but that just made me laugh even more. Daddy didn't wake up though even though I was giggling lots!
When daddy woke up it was time for lunch so daddy went to find out if I could have anything to eat as I can't eat anything for a few hours before I have to go to theatre. My nurse told daddy my INR levels had actually gone up since yesterday so I couldn't have my hickman line out today. Daddy told mummy it was ok for her to give me some lunch and I ate nearly half a jar and really enjoyed it.
Mummy and daddy were very concerned because my warfarin dose had been reduced yesterday so they couldn't work out why my INR had gone up. They asked to speak to my doctor again and she explained in more detail what the problem was. She told them my INR range was between 2.5 - 3.5 but today it was 4.6. Daddy asked if that was dangerous and my doctor said it could be if I cut myself as I would bleed a lot and that's why I couldn't have my operation. She told mummy and daddy that my INR level has to be around 2.5 for it to be safe for me to go to theatre. She said the reason they were still having problems was probably due to my antibiotics which could still be present in my system. Daddy asked if my local hospital could take my hickman line out and my doctor said she couldn't see why not and would speak to my other doctors to see what they thought and would let us know tomorrow.
When my doctor had gone me and daddy watched In the Night Garden and I started to get sleepy. I fell asleep and had my milk through my tube in my nose while mummy and daddy went out for their lunch. When they got back I was wide awake and ready to play some more. I played peek-a-boo and bashed daddy a bit. Mummy and daddy wanted to take me out to get Dylan a special present ready for when we go home but, because I was waiting for a scan to be done of my heart, we couldn't go out today. My scan didn't happen in the end so maybe it will be done tomorrow.
For tea I had a little bit of food and then auntie Cassie came to see us all. She gave me my bottle and I had 40mls before I'd had enough. I wasn't sick again so auntie Cassie was pleased! Mummy and daddy went to have their dinner and me and auntie Cassie played some games and she sang some songs to me while my milk went through my tube in my nose. When mummy and daddy came back I was still awake and had a cuddle with daddy for a little while. Then mummy had a cuddle with me and, because I don't like favouring one parent over another, I was a bit sick all over mummy's top - oops! Luckily daddy had another clean top in the cupboard in my room so mummy had to change into that while daddy changed me. I smiled lots just to let daddy know I'd done good and got mummy too.
Auntie Cassie had to go so daddy tried settling me down to sleep but I just wanted to play. I was tired but I love playing so I try my hardest not to fall asleep. Eventually I just couldn't keep my eyes open anymore so I had a cuddle with mummy and then daddy put me in my cot and I fell asleep.
Mummy has asked daddy to tell people that she has entered my story into a competition on a website called Facebook. My story is currently winning and she wondered if you could vote for me by clicking here and clicking on the thumbs up image on the right of the page. Daddy will let you know if I win next month. Thank you! xx
