A Run Down

i was thinking that not everyone would undersand why my brother is running on behalf of our Daughter Rani...so i thought I would give a brief run down.

I took this from our blog....

Rani was born 25 August 2005 and at about 3 days old I noticed that she was jaundice (I wasn't concerned as my son was also jaundice at that age), well the hospital did some blood tests to check her levels and I got a phone call from the Peditrician at 11pm, saying that he was concerned about her Billirubin levels and if we could do another blood test in the morning....fine

When she was 5 days old and after another blood test we went home to adjust to a new baby in the house again (as it had been 7 years since I had my last bub...lol) being told to see the Peditrician later in the week for the test results.

Well her bilirubin was still high and other levels were getting higher, so this menat more blood tests...it is so horrible to watch the nurses trying to get blood out of her heal and listening to your baby scream.

Well each week we had blood tests to be told by the Peditrician that he wasn't sure what she had, finally he came up with something "Biliary Atresia" and we were referred to the Royal Childrens Hospital Gastroenterolgy Dept.

On 22nd September 2005 (just before Rani was 1 month old) we were at RCH, of course they ran more blood test, urine tests, ultrasounds...all up we were in the hospital for 8 hours. The Specialist suspected 'Biliary Atresia' which is basically the bile ducts are blocked in the liver and can not drain the bile, which in turn causes the jaundice and at the same time is scarring the liver.

Now at this appointment we were told that she would need to come into hospital and stay 1 night to have a liver biopsy to confirn that she had "Biliary Atresia".

Rani was admitted into hospital on Monday 10th October 2005, she had a heart scan on Tuesday, the Liver Biopsy on Thursday and discharged on Friday. It was what they suspected and they wanted to do the "Kasai Procedure" ASAP as she was so young they thought she was a higher percentage to have the operation be a success.

So 4 days later on Tuesday 18th October 2005 we were back in hospital for the 'big' operation. By this stage my baby girl is only 55 days old. First thing Wednesday morning she went into surgery, the longest, most agonising 6 hours of my/our life. When I saw the surgeon had a smile on his face when he came to the parents waiting room I think I finally took a breathe. Seeing my baby connected up to tubes and drips and so small in the big cot was to much to bare....we sat with her as they bought her around, but they kept her on morphine, more to stop her from moving. She had a huge 14cm scar right across her belly, but we were all suprised at how neat it already looked.

9 days later we took Rani home, hoping and praying that the operation had worked and this would be the end of it. It took 6 weeks before they could confirm whether the operation had been a success. Everything seemed to be pointing the way that the operation was working, as we were going into the hospital for weekly blood test and then at the end on November, just shy of 6 weeks it all started going pair shaped.

Firstly we got a call at 11.30pm one night telling us that we had to rush Rani to Emergency as she was dangerously low of Vitamin K and she needed a shot now!!! Since the liver biopsy she has been on Vitamin K, A, E and D, plus lots of other meds and supplements as she can not absorb these Vitamins.

Then her belly became swallon and she was having difficulty breathing and drinking...John had taken her in for one of her routine check-ups and she didn't come home, they admitted her there and then. The biggest indication that the operation was failing. Her little belly was bloated to 45cm. They put her on 2 different diaretic (which she is still on today) to drain her belly and 15 days later, just before Christmas she came home.

January 2006 was a good month for us, our weekly appointments got changed to fortnightly and Rani seemed to be doing fine, that of course was until we went for her check up in February to find that in 3 weeks she had lost weight instead of gained.

We were issued a special formula and more protein powder etc to try and fatten her up. In the 4 days of the new formula she put on 5 grams. The Docs gave us another week, this time she put on 115grams, the Docs weren't overly happy and increased her intake and gave us another week and said if she didn't put on weight they were going to admit her. Well she only put on 80 grams, so we were told that she was going to be admitted and all we could do was wait for the phone call as to when a bed was available.

That call came on Saturday 1st April and she was admitted. On Sunday she was given a naso-gastric tube to amke sure she got the amount of fluid she required daily and then on Wednesday we were able to go home.


We are back to weekly visits as she really needs to gain weight as she is almost 8 months old and only weighs 5.5kg and has no fat, no muscle, so no energy. She also needs to gain weight at least over 8.5kg so she can have a liver transplant.

So that is Rani's story so far, hopefully there won't be many more complications and she will gain weight, get a transplant and never remember her rough statr to life. I have been doing a hospital album for her, so when she gets older she can understand exactly what happened.

this is what we thought back in april 2005

here is the rest that can be found throughout the blog

On 19th April Rani's Specialist came back from 5 months overseas - well he took one look at Rani and admitted her into the Hospital...he was not happy at all with her weight gain and wanted to do a couple of test and play with her formula to try to fatten her up.

Well we were told that we may be in the Hospital for around 10 days - mind you during all the Hospital stays my Mum and Dad have our other 2 children living with them.

Rani was placed on pump feeding as she wasn't keeping the other way of feeding down, her formula was played with, but it was coming out either top or bottom and she wasn't gaining any weight. Before we knew it 10 days had turned into 3 weeks.

The Specialist decided to give Rani a bowel biopsy to make sure all was working as she constantly had the runs...well it involved putting a camera down her throat...the biopsy came back fine but the findings of the camera scared all of us. It found that all the way down her throat she had large varices (veins) that if irritated could bleed and if not stopped could be fatal....well we were then given the horrible news that she wasn't going home until she had a transplant and that the work up would begin for her to be on the transplant list.

Also it was decided that to help her gain weight - as the state that she was in she wouldn't have made it through the operation was to feed her through a vein in her neck, which also could be used for drawing bloods - so no more horrible blood tests. so she went in for that operation as well.

We knew we were long termers when we were given our own room. My whole family helped out. Mum and Dad had the kids everyday and we had them on weekend...Mum came in every morning after dropping the kids at school except for Wednesday...i went in the afternoon, so Mum could be back to pick the kids up in the afternoon, John came in every night after work and my brother came in on Monday and Wednesday nights and my sister on Friday nights and some Saturday night...and Mum and Dad came in on the weekends and Dads RDO's...which beleive me took a lot of stress of John and I.

Anyway we had a lot of ups and down in our own little room. Rani finally began to gain weight but because of her varices she wasn't allowed to eat or drink anything...her biggest happiness sucking water from a wet facewasher. Sadly when Rani got sick, she got really sick...she was rushed onto the transplant list when she had blood in her stools as this was not a good sign...she managed to get a cold and couldn't fight it which turned into a lung infection and spent 4 days in ICU...then she threw up blood and was back in ICU for another couple of days.

By July we were being told that Rani was the right weight and really needed to get a transplant ASAP, unfortunately that perfect one just never turned up.

i need to tell you that while all of this was going on...i mean rani was the toughest girl out...she broke her arms and didn't even whinge...she always smiled and made everyones day, she touched everyone heart and even the Nurses fought over who was going to look after her.

Well we knew things were getting worse for Rani, as her belly was so swollen she couldn't even stand to be picked up...she was so uncomfortable but not whingy...always laughing and smiling at us...

We began to focus on her 1st birthday and hoped that the biggest birthday present would be a liver. Her birthday was great for us...Rani was very uncomfortable and not very happy, she actually spiked 3 tempretures that night.

The following day was the beginning of the worst week of our lives. On Saturday 26th August 2006 I had come in with the kids to let John take them home as he had been there in the morning. Rani was whingy...so not like her...a Nurse that had left had come into to see Rani to give her a birthday present and she cried the whole time...again not our Rani...well she left and things went crazy....rani's blood oxygen levels dropped and she was put on oxygen...but she was also bleeding constantly from the mouth. the Docs were called and while checking her, she stopped breathing and a MET call was made and ICU rushed up to Rani's cot...they put a breathing tube in and took her down to ICU.

The next morning we got a call to say her Kidneys were failing and did we give our permission for her to go on dialysis...we again rushed in and later in the afternoon were told by her Specialist that the outlook didn't look good. I'm sorry i can't type the rest as i said it is own our blog.

The end of the story is that 1st September 2006 Rani was taken off life support and quickly and peacefully passed away...i guess the saddest part of the story is that if more people donated organs, i wouldn't be typing this, as a liver would have saved her...

so this not so short run down was our babies short life...most of which was spent in a Hospital bed as that is where she spent the last 5 months of her life...and this is why my brother is running for Rani as she was a fighter and fought for as long as she could and Steven although he has never run 15km's is doing it because of Rani's fighting spirit...so i thank each and everyone of you that donates and helps to put money towards finding a cure for this heartbreaking illness.