Tuesday, April 11, 2006

Explaining....



OK for those that do not know about Rani, here is a rundown.

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, I was starting to get fed up by this stage, as it was costing us $85 each week to be told the Doc didn't know why her levels were getting higher and higher. 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".

My husband and I went home in shock and exhausted from all the tests and overload of information, to await the dreaded phone call as to when we had to take our baby into hospital.

The call came while I was shopping with my mum at Toys 'r Us...you could have knocked me down with a feather, what was meant to be one night had suddenly turned into 4 nights.

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.

First photo is a pic of the Meds Rani was on after her op..there are now even more :(

The second photo is Rani high on Codine after her liver biopsy...lol

3 comments:

Tania said...

Oh mel what a story Rani has to tell when she gets older, And how much turmoil has your life been in for the last couple of months! Take care of you!

Laurie said...

Hi! I found your blog doing a search on Biliary Atresia.

My son had Biliary Atresia and had a liver transplant a little more than two years ago (when he was three months old). He is now two and a half and you'd never know he had been so sick.

Rani is beautiful! I hope that she is doing well.

Anonymous said...

Hi Mel, Jo from Albany WA. I've been following Princess Rani's story & have tears running down my face. Sending so many wishes for you all.
Will ditto what Chilli has said "Take care of you"!!