24 hours: Alice Johnston

Alice Johnston

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In October, Temuka's Alice Johnston became one of the smallest babies to undergo a liver transplant in New Zealand, in which she received part of her dad's liver. Her mum, Kate Manson, shares the details of an average day for the now seven-month-old baby.

Dad usually wakes me about 6:30am for my morning milk. I have to stop feeding at 7am because I'm nil by mouth every day from 7am to 9am and 7pm to 9pm. This is due to the anti-rejection medicine, Tacrolimus (Tac), that I take twice a day. I must take this medicine on an empty stomach and wait an hour after taking the medicine for it to be completely absorbed. Dad makes sure that I am well fed so that I am not hungry until after 9am.

I have to take many doses of medicine a day and Dad usually slips one or two into my morning milk. He does this because most of my medicines taste horrible and I spit them out if my parents try to syringe them into my mouth. I am very good at closing my mouth tight and making it very hard for Mum or Dad to give me medicine, so they have learnt to sneak it into my milk.

At 8am on the dot (if it is a Monday or Thursday) I get a blood test done at Starship Children's Hospital. Dad takes me to Micro-collect on level three where my heel or finger is pricked to make me bleed. I have had so many blood tests since I was born that they do not bother me anymore. Usually I just watch the person taking my blood closely and smile at them when they are finished.

The blood tests are done so the doctors can keep a close watch on my Tac levels. If my Tac level is too high it can mean I have an infection and if it is too low it puts me at risk of rejection. The doctors tell me it is a fine balance trying to work out the exact amount of Tac I'm to take each day. Often they will ring Mum and say, "change the Tac dose today please".

The blood tests also check that my new liver is happy and that all the medicines I'm taking are not hurting other parts of my body. Quite often my potassium level comes back high and Mum or Dad have to take me back to the hospital for another blood test.

One time they kept having trouble with the blood taken from me and I ended up having four blood tests in one day. I was sore from all the pricking of my fingers and heels.

If my potassium level gets too high it can cause problems for my heart, which of course is not good, so the doctors must be very thorough. There are several reasons why my potassium levels can be high from the blood tests. One reason is babies naturally have high potassium levels in their blood and when the blood is collected it can break the cells, spilling the potassium out therefore giving a higher than normal reading. Another reason is some of the drugs I am on can raise my potassium levels. Also, sometimes the blood collected can clot before it reaches the person testing it so it gives a false reading.

Most days Dad, Mum and I go for a walk. I am at high risk of infections due to the immuno-suppressive drugs I take, so when I'm in covered places like malls, shops and especially in the hospital where there are lots of bugs, I must have my rain cover on my pram. During our morning walks the cover doesn't have to be on – there's nothing better than being in my pram in the fresh air.

As I said earlier, I have lots of doses of medicine during the day – 16 to be exact. Mum has drawn up a tick box system in my daily record book to help them keep track of all the doses.

I was on more medicines but they are slowly dropping off as time goes by and soon I hope to be only on two medicines. Eventually I will just be on Tac, the main anti-rejection drug.

During the day I behave just like every other baby. I drink milk, play and sleep. At the moment my favourite toy is the big rag doll my aunty Tina sent me for Christmas – I love cuddling and talking to her. Anything that makes noise is also fun to play with.

I love it when my big sister Hazel is visiting, which is quite often, thanks to my grandparents who bring her up a lot. Hazel makes me smile and smile, she is so funny and is really nice to me.

Just the other day Hazel went to Butterfly Creek with Dad and his parents and she brought me back a cute pink headband.

Two of my bottom teeth are also almost through and I love putting things into my mouth to rub on my gums. I am almost sitting up by myself. Being in hospital has delayed my physical development and means I will be a bit slower than normal to reach milestones but I will catch up. Rolling over has been difficult due to my big tummy. The piece of Dad's liver I got was bigger than mine, making my tummy bigger than a normal baby's and also because of the bile drain that is still in my tummy. But I am getting there, I know I'll be doing it soon.

At night I have my tea time milk, finished before 7pm, a bath and then I go to bed. Mum does the night shift and Dad does the morning shift. At 10:45pm I usually wake pretty hungry and ready for my last feed for the day. Then it is off to sleep for the night until Dad wakes me at 6:30am – another day closer to going home.

- © Fairfax NZ News