Saturday 15th November 2008 – Daddy came to see me very early this morning. I’m glad he did because my nurse had woken me up early and had tried getting me to eat my porridge but I didn’t want it so she left me in my chair but forgot to give me any toys or put my tv on! I was feeling sleepy so was trying to sleep but couldn’t. When daddy came in I was really pleased and held my arms out so he’d give me a cuddle which he did. Then he changed me and got me dressed and gave me a big snuggle cuddle.
After me and daddy had had a cuddle he put me back in my cot and started putting all my toys and clothes away. Then he got my pushchair ready and I started getting excited because I thought we were finally going home! Daddy said he had to wait to see my doctors and the blood nurse who needed to come and stab me again. I started getting hungry so started telling daddy I wanted my milk but he couldn’t find my nurse. He gave me some cuddles and played some games with me and then took me for a little walk around the ward. I found a new toy to play with and took my hunger frustrations out on it by bashing it a little bit. Then my nurse came in and daddy asked her for my milk. She said she would get it and then told daddy that my doctors were on their way round to see me but the blood nurse would be late because she had other people to stab. It looked like we were going to have to wait quite a while to leave…
I drank all my milk from my bottle and wasn’t sick at all! Then my doctors came in and just checked with daddy that he was happy with the arrangements that had been agreed yesterday. Daddy said he and mummy were looking forward to taking me home and that they had all my medicines and feeds all planned for the day. My doctor was pleased and said mummy and daddy could bring me back to hospital any time tonight. Then my blood nurse came in and daddy took my socks off. I knew what was coming and started crying but I was brave and luckily only had to be stabbed once today. My INR level was 4.6 so was a little high which means I’ll need to be stabbed again tomorrow. My doctor told daddy they’re planning to stab me twice a week from next week so that’s much better than up to 3 times a day like I’ve had to have this week.
Then my doctor told daddy that my weight was still very low and wasn’t increasing like they hoped it would. He said they were going to monitor it very closely over the next month and, if it didn’t improve, they would have to think about maybe putting a more permanent tube straight into my tummy. He called it a gastric tube and said it was a bit like my hickman line. This would mean I’d need another operation…
When my doctors left my nurse came in with all my medicines ready for daddy to take with us. She told daddy we could go and she would see us later. Daddy put me in my pushchair and took me to the car where he strapped me into my car-seat. I’ve not been in daddy’s car for a very long time and I fell asleep very quickly once daddy set off. When I woke up we were home and mummy was waiting at the front door for us!
Daddy took me indoors and I couldn’t stop smiling! Dylan came downstairs and made me laugh lots by falling over and doing his normal big brother silliness! When I looked around I recognised my comfy bouncy chair, my high chair, my playpen and all my toys! I was soooooooooooooooo happy to be home!
Mummy gave me a big cuddle and then I had my lunch. I ate half a jar and didn’t sick any of it back again. Then daddy gave me some medicine to help me stop being sick called domperidone and I took it in my mouth and mummy and daddy said I was a very good girl because I didn’t spit it out (I like that medicine though so why would I spit it out?!). Then I had my milk and drank all of it without being sick! Daddy said if I carried on like this then I wouldn’t need to have a gastric tube fitted as I’d be gaining weight every day. I’ll do my best not to be sick anymore, because I think 5 operations in 11 months is plenty for anyone let alone a little baby like me! Besides, i’ve had enough of hospitals now and just want to be at home with mummy, daddy and Dylan.
After I’d had my lunch and my milk granddad Mick came to see me and I had a cuddle with him. Then I started feeling tired so daddy took me upstairs to my own cot! I giggled at my musical aminals (Tiana means animals) going round above my head and then mummy and daddy gave me a kiss and left me to go to sleep. I didn’t like that plan too much so started crying. After I’d been crying for a couple of minutes daddy came and got me and I fell asleep while he cuddled me downstairs.
When I woke up me, mummy, daddy and Dylan all went out to see nanny Chris at her work. All her friends came to see me and I smiled a little bit to be polite. I didn’t know any of these people and I’m still a little bit worried when someone I don’t know smiles at me… just in case they’re about to stab me in my foot, arm, hand or leg (hey, it happens a lot to me!). Luckily none of them did stab me so I was happy when we all left and went to do some shopping and then went home again.
I ate over half a jar of dinner and was good again and wasn’t sick. When I had my milk I only had 60mls so daddy put the rest through the tube in my nose. When I’d finished me and daddy had a big cuddle and watched some tv. Then mummy had a cuddle with me and changed me into my pyjamas. I thought I was about to go to bed but instead daddy put my coat on me and mummy put me in daddy’s car. I fell asleep and, when I woke up, I was back at hospital again. My nurse came to see how today went and mummy and daddy told her how good I’d been and told her what I’d eaten and what medicines I’d had and when I’d had them. I fell asleep very quickly and will see daddy in the morning when he comes to collect me to take me home again tomorrow. Then I’ll only have one more night in hospital before I can go home properly… Not long now!