Wednesday 29th October 2008 – I don’t think my nurses read my updates… I was woken up at 6am again to be weighed and was good and didn’t wake daddy up. When daddy did wake up I was playing nicely in my cot with my toys and got excited when daddy came and gave me a cuddle. My nurse told daddy that my heparin had been stopped and the doctors would talk to him later.
I had porridge for breakfast and then had my milk through my tube. I was good and wasn’t sick and after I’d finished me and daddy watched some tv together. While we were having a cuddle my doctors came and asked daddy how I was. Daddy told them I was fine and seemed very happy. My doctors did their usual prodding and poking and said my liver was fine and my heart sounded good but they were still puzzled as to why I wasn’t gaining weight. They told daddy that my INR levels were up to 2.1 (nearly 2.5 which is the target!) and that they were waiting for my blood results to see if they could stop my heparin. They also said they might be able to take my hickman line out today or tomorrow so daddy got excited because he said we might be home for the weekend after all!
My nurse told daddy it would be highly unlikely my hickman line would be taken out today as they’d not prepared for it. She said it would most likely be Thursday or Friday. Daddy played with me and we had some more cuddles and then I had a sleep. After I woke up my nurse came in and put my heparin back on. She said my blood results had come back and I still needed heparin for the time being. Daddy looked disappointed but he knows I need it and will have it taken off once my INR levels are right.
For lunch I had some Sunday roast again and really enjoyed it. But when I started having my milk through my tube in my nose I started to get bad tummy pains and started crying. Daddy stopped my pump and called my nurse who said maybe I’d had enough and should wait longer from having something to eat to having my milk. Daddy said that was a good idea and he’d give me my food at least an hour before my milk in future.
Daddy wanted to take me out again today but my doctors had said they wanted to do another scan of my heart to make sure everything was still ok. Because of this we had to stay in my room until I either went downstairs or they brought the big laptop up to my room. Eventually they came to see me and did a very long scan. I don’t like doctors touching me because I get scared in case they stab me with a needle so daddy tried keeping me calm until the scan had finished. It took so long I even had a little sleep when daddy sang In the Night Garden. When the doctor finally finished he told daddy that my valve was working well, there was no regurgitation and my left ventricle (whatever that is!) was no longer enlarged and swollen. He also said there were no thrombosis’ and said he was very happy with me.
Daddy said that mummy had told him I’d been very brave and I deserved another balloon that falls up for being so good as my other one is getting flat. Daddy said that mummy was right (she usually is…) so he brought me back a nice balloon that falls up with a kitten on it. I was very impressed and played with it for a long time with daddy.
When I had my tea daddy left me to go and have his dinner. While he was gone my nurse gave me my milk through my tube. She left me in my chair as daddy had put me in it to watch tv. My tummy really started hurting again but daddy wasn’t here to switch the pump off so I was sick a lot all over my bed and seat. When daddy came back from his dinner I cried really loudly when I saw him to tell him I’d been unwell again. Daddy quickly cleaned the sick from my seat and asked the nurse to change my bed while he gave me a bath. I was very upset because I was all on my own when I was sick and wanted mummy or daddy to be there to make sure I was ok. Daddy said he won’t leave me until an hour after I’ve had my milk in future so hopefully it won’t happen again.
Daddy gave me a long snuggle cuddle after my bath and I fell asleep. Then my uncle Dom came to see me and I woke up to say hello. Daddy went downstairs to talk to uncle Dom and when he came back my nurse told him that they were going to put a new canular in my foot as the one in my hand has been a little temperamental over the past couple of days. I was not impressed and knew something was happening as 2 nurses appeared and switched the lights on. I started crying before they even grabbed my foot and daddy tried hard to calm me down. When it was over I had some milk from my bottle and surprised everyone by drinking 50mls! Daddy said that was the most I’ve had from my bottle since August! It made me very sleepy though so I fell asleep and daddy said he’d do my update once I was settled.