5 More Days

I can't believe that in 5 days Rani will be 1. It is lovely that some of the Nurses that aren't working on Friday are coming in to see Rani on her birthday. I think it is really special of them.

Well Buddah is now a HUGE!! 10.18kg can you believe it. We are over the 10kilo mark and at the rate she is gaining weight she will be 11kilo in about a week. They are looking at ways to cut back her weight gain, as she is not growing...just getting fat!

Well she is still in a pretty good mood, very sore in the stomach, grimacing everytime we have to change her nappy or move her. So not really many cuddles to give her as it just hurts her to much. I think she is getting very frustrated as her belly is so big and bloated and sore she can't move very much and can't get at toys in her cot and she gives out a frustrated yell so we can grab what she is trying to get.

Her latest thing she has learnt is shaking her head no. Everything is no...you will be talking to a nurse and she shakes her head no..it is very cute. Although I asked her if she loved mummy and she grunted...mmm..so at least she didn't say no...lol.

We are still on one on one Nursing during the day...'just in case' with the horible scary cart as I call it...it holds everything that is needed if she has another bleed...and touch wood it won't be needed again.

Well we have been madly packing up the house as we move in a week...but I keep getting distracted as I am packing up my scrapping stuff, finding things I forgot I had...so of course I have been scrapping..hey I need a break every now and then...lol.

Well I better be off to bed as both Josh and Teagan are competing in a Basketball Comp tomorrow and have to be at school at 8.30am.

Night all.

Thank you Marilyn

Well I went to the PO Box today and was handed a huge parcel. Thought it was a present for Rani but when I opened the card it was addressed to John and I.

Thank you Marilyn for all the presents . Not only is there a beautiful blanket, healing angel and the cutest froggie slippers and toy she also put magazines in for Josh and Teagan.

So thank you, thank you, thank you...it is truly appreciated. The blanket will look fantastic in Rani's cot when she comes home.

If someone has Marilyns email addy could they email it to me, as I don't have it :)

Also while I am on the Thank you's I don't think I thanked the lovely girls from both Aussies and Memories and More who have each sent me a mini album with beautiful and touching pages in them. THANK YOU. I am sure Rani will treasure them when she is old enough to understand.

Not much to update on Rani. She is doing a lot better no more blood vomits and she is still fat and happy, so awaiting that liver and counting the days until her birthday. Can you believe that in a week my baby will be ONE!!!!

A Bit Better Today

Today started a bit scary with Rani vomiting a huge blood clot up, but thankfully that was it, nothing else came up. She wasn't very happy this morning. Crying in pain and it is so hard to know what is wrong as she can't tell you. She is not a sooky child, for her age and what she has gone through I am in awe of her strength. So when she cries you know there is something wrong.

But by the afternoon she had had a semi decent sleep and had perked up. She is still into kissing and was grabbing some of her toys and kissing their faces.

I still can't believe that in 9 (well almost 8) days my little girl will be one and unfortunately have to spend it in the Hospital. We really had hoped that she would be home and healthy before she turned one. None of us had any idea that it would drag on for so long and because she is connected to so many different things we can't even take her out on a day pass. :( I guess she will be having two parties one in Hospital and a big one when she is home.

AGAIN I missed Rose and her Dad...but John got to meet them. Rose had a liver transplant in 2004 and had the same condition Rani has and a lot of the same problems. The Hospital actually gave us there phone number and email addy and they have been a great support. Lynne (Rose's Mum) leaves messages on the Blog regularily. I got to speak to both Rose and Shane on the phone...one day I will meet them.

So basically we are still waiting, waiting, waiting for a liver. Hoping that Rani stays 'stable' - a word that I am beginning to hate hearing. Stable but going down hill as this is all part of Biliary Atresia - HA!. It is frustrating to hear everyday and added that they can not do a lot more to help her until a liver comes. I guess the most annoying / frustrating part is constantly being told / reminded how seriously ill Rani is - like we are going to forget!..I mean everyone holidays at the Hospital don't they?

Well last night I scrapped...as I said it is a great way to escape into another world almost - a welcome distraction from waiting for the phone to ring. As John said to me this morning we need a liver to come in so we can sleep a full night, instead of worrying that the phone will ring for either a liver or that she has to go to ICU again.

Here is the LO of Rani and Daddy.

We are back!!!

At 3.15pm this afternoon we were taken back to 5W. Rani missed all the excitement as she was in a deep sleep not waking at all though the banging of the cot from ICU up to 5W. But it was great to see her sleeping so soundly, as she has been really restless lately and not going into a full sleep so being cranky and tired.

Her Nurse noticed that her stats had dropped a bit from ICU she was breathing hard eve though she was sleeping and her oxygen levels were sitting at 90%..so she put the oxygen mask near her face and they picked up but she called the Gastro team to come and see her.

They came down and when they pulled the oxygen away from her face her stats went down again, so they ordered an x-ray to make sure there was no fluid on her lungs. She struggles to breathe already due to the pressure of her hardened liver and enlarged spleen pushing on her lungs. By the time we left tonight we hadn't heard anything about the results. Here is happy Rani back up at 5W and loving all the attention from all the Nurses welcoming her back

But on the bright side when she woke up she was so happy. Her latest thing is making the kiss noise. She loves doing it at pictures of herself (such a vein girl..lol) and Rebecca and I were getting heaps of them tonight. She was laughing and moving and squirming. None of us have seen her move so much in ages, she was twisting around and turning herself almost sideways in the cot..it is so good to see her active. :)

Her weight is now a massive 9.904kg..lol...she is so chunky..lol..but her belly is up to 57.5cm so that is not good...but as I keep saying hse is happy and that atm is all I care about...of course healthy would be great but I am happy to have happy until the liver arrives.

Then John bought in Krispy Kremes for all the Nurses tonight. He went up to Sydney today, so he knew he had to stop off and get some KK at the airport or be killed...lol...the Nurses loved them...the one box her bought in was gone in seconds...lol

OK so here is a LO I did the other day. i am so glad that I found this hobby...it is great to scrap and get taken away with what I am doing. A most welcome distraction from reality...plus it is like keeping a really pretty diary...lol.

This LO is of Rani she always tries to grab the camera like she wants to take the photos not be in all o them. :)

Quick Update

OK I am about to walk out the door to go to the Hospital so for all you serial checkers I thought I would let you now what has happened since last night.

Mum has called me from the Hospital as she did mornng shift...Rani is still in ICU but being moved back to 5W this afternoon.

She has had a couple more blood vomits but is being giving transfusions of plasma, blood and Vitamin K and other things I can't think of atm to help with her clotting and try and stop the bleed. Thankfully again she hasn't had another vomit since 11am.

So that is all i know for the moment...so I will update when I get home tonight when I do shift change with my sister...lol

OMG!!! & THANK YOU

Well what a start to the day. We thought we were in for a sleep in this morning as Josh and Teagan had a curriculum day off school. Well that was not to be!

Mum rang me this morning at 9.30 (i was awake just not out of bed...lol) to tell me that she had walked into find Rani vomiting blood. Something that we have been warned about for months but never thought it would happen. She pressed the Emergency Button on the wall and then the Nurses called a MET call. Another thing that we never wanted to hear for her room.

Poor Mum was left to deal with all the Nurses, Doctors etc, plus of course seeing her Granddaughter vomiting blood. We were on our way - but it takes 30 minutes to get to the Hospital.

When we got tot the Hospital we found Mum sitting in the Foyer of 5W with the Chaplain Keith, so we left the kids with them and went to the room. There were so many Nurses but when they saw John and I they made room so we could get to her bed. She didn't look to bad, although through tears I could see her legs kicking - so I felt a bit better.

Eventually once they had settled things down a bit she was taken to ICU. Thankfully she stopped vomiting blood at 11am and didn't have another episode for the rest of the day. She had wto blood transfusions and lots of other medication to clot her blood, but she remained pretty much stable most of the day.

We took Josh and Teagan into ICU to see Rani once they had cleaned her up and they said there good byes as did Mum and then she took them home with her.

We were happier when she grabbed for a wet face washer, knowing that she was starting to feel better. They are keeping her in ICU for the night...we would have been back up at 5W but an overnighter is staying in her room. So both John and I were happy to come home when my brother came in at 7pm tonight.

A HUGE THANK YOU to everyone that has SMS'ed, left emails and comments on my Blog...it is truly appreciated that you care so much about all of us. So THANK YOU THANK YOU THANK YOU

Well...

not a lot to say today...Rani is still in the Hospital and still classed as 'stable' and of course still waiting for a liver...lol...but STILL happy so that is a bonus.

So here are some boring statistics I was thinking of last night.

On Monday Rani will have been on the Transplant list for 12 weeks.
On Wednesday Rani will have been in the Hospital (this stay) for 17 weeks
In 13 days Rani turns 1
In 14 days we move...argh!!!
In the 4 months Rani has been in Hospital she has gained 4.32kg
In the 4 months Rani has been in Hospital her stomach girth has ranged between 47cm to 56.5cm

So I thought I would share some LO's that I have done lately. I have really enjoyed scrapping this week :)

TFL

Well...

it is amazing what some Albumin and Blood can do for a girl...lol...Miss Rani is almost completely back to her happy self again. At least we are getting smiles..she is still very tired but smiling and that is what is important to us.

She had an Albumin tranfusion Wednesday, a Blood transfusion Thursday and another Albumin transfusion today. So obviously lacking these essential things really throws her system out and makes her grumpy...lol

Well she is now a massive 9.82kg and has had the calories taken down in her TPN as everyone agrees that she is now putting on the weight way to quickly...so she has kind of been put on a diet..lol. I still can't believe that in the 4 months we have been in the Hospital she has practically doubled in weight.

Well the countdown continues a tiny 14 days until Rani is 1...our wish is still that she gets a liver before her 1st birthday.

Did you see 7 News on Thursday..they had a report about the upcoming Transplant Games in Geelong this year and also a push for Organ Donation as only 80 people have donated their organs this year. So if you are not a registered donor make sure you register.

My little baby broke my heart tonight. My sister came in and when I said 'bye bye' she burst into this really heartfelt cry with tears and all. For anyone that knows Rani usually when she cries there are no tears and to hear the cry and see the tears broke my heart. I felt so bad I had to sneak out of the room while my sister played with her.

Well Josh has just come home from the school disco..Teagan went earlier and when hers finished Joshua's started. So off to see how his night was.

WOW!!!

OK so I haven't updated for a couple of day...but NO still no Liver...lol.

Sorry I had to change the settings to only registered members leaving comments due to stupid spammers having nothing better to do with their lives than leave junk comments on my blog.

Lets seeI came home from the Hospital on Monday night to find a parcel sitting on my bed. It was from the beautiful Robyn. Inside was a beautiful top and some socks for Princess Rani. Thank You they are gorgeous.

Well Rani just doesn't seem as happy anymore. She is very restless and won't sleep, she tosses and turns and just can't find a comfortable spot to sleep. So this is what she does most of the day trying to sleep and not smiling at anyone. Mum and Dad went in on Monday morning..this is the way Dad now spends his RDO's...lol and not even a smile for Grandpa. I eventually got a little smile at 8pm but that was it.

Her extra does of Lasix helped a bit and she lost 110grams but had put it back on by the following day (Tuesday). So on Tuesday she had another Albumin transfusion and Lasix in the middle so again it should clear some of the excess fluid. But her belly is going up by about .5cm each day and it is so hard. If you put your eyes at stomach level on Rani you can clearly make out her liver and spleen they are huge and just so hard...it must be so uncomfortable for her. It is so hard to watch her in this pain and not be able to do anything to get rid of it :(

Well Census night has come and gone and it was a bit sad to fill in the part about Rani not being home, but last night I got a call from my sister saying that Rani had her own form to fill out and that if it was alright for her to sign it...lol

Can you believe it last night I actually scrapped...this is my first LO for August and first one for weeks. I love and hate this photo, it is great to see her happy as it was taken not long after we got out of ICU and it had been a long time since we had seen smiles...but hate it as it shows up her yello eyes, her scratch face and yellow skin....all things from the disease that I can't wait to see disappear when she gets a new liver.

Oh yeah on the scratching side we worked out that it was her wrist band that was cutting her face. She has no fingernails as they are cut every 2nd day, but we were watching her on the weekend and when she scratched at her face she rubbed her wristband on it as well and when her nose started to heal we noticed that they were long scratches. So her band is now on her ankle and no more scratches have appeared on her face. :)

Well last night when I was going through photos to scrap I found some early ones of Rani when she was first admitted. Check out the difference now...to think we struggled so long for her to put on weight and now she is gaining to qiuckly...lol. So in the 4 months...yes today is officially 16 weeks in Hospital, she has practically doubled in weight.

19 Days

I can't believe that in 19 days my little baby will be 1 year old. It is sad that she will definately be spending it in Hospital and fingers crossed that before it she gets a liver and is feeling alright to open some presents.

Well the kids and I had a pretty productive day of packing. Finally one thing has gone our way and we are having a hard rubbish collection next week so we can throw out a heap of stuff that we were going to have to get a skip for...so that should save us some money. We are pretty much getting rid of everything in Josh's bedroom as he is almost 10 and tells us that his bedroom is to babyish and that he shouldn't be sleeping in a racing car bed anymore...lol. So just before we move out of Mum and Dad's we will buy him a new bed and furniture as they will be sleeping in my sisters beds at Mum and Dad's. Although Teagan doesn't miss out, she scored a beautiful wooden tallboy that I bought of my sister when she moved to London...so she is happy as it is already in her room at Mum and Dad's...lol

So we went late to the Hospital this afternoon. John took the kids home at 6.30 and I stayed until Rani settled. Well she fell asleep briefly but I thought I would stay for her 8.00pm meds as she sometimes throws them up we feel more comfortable giving them to her slowly and then being there just in case she does bring them up. Not that the Nurses don't do a fantastic job...but hey we are there anyway. So she woke at 7.45pm and decided it was play time until 9.30pm when she finally decided to fall asleep - so I made my escape.

Rani loves her own reflection, photos etc and I took photos of her latest game. She has a large fish mirror in her cot and instead of facing you to look at you she rolls on her side and watches you through the mirror, every know and then turning to make sure you are really there...she thinks it is the funniest thing ever...lol Here is a pic.

Again Rani is gaining to much weight to quickly. Jumping from 9.4kg yesterday to 9.6kg today. So she is having extra Lasix to try and get rid of the excess fluid, so will find out tomorrow if it has helped.

Thank you everyone that has left comments here and on their blogs wishing our little Rani the best, it is truly appreciated that there are that many people out there that care so much and have never met our little Princess Rani. :) THANK YOU!!! :)

Lastely a pic of Rani and Teagan, they were having a lovely conversation :)

Tagged!!!!

Okay I have been tagged by the lovely Sal

1. How old are you? 32

2. How many kids do you have if any? 3 Josh 9, Teagan 8 and Princess Rani 11 months

3. Are you married, single, divorced, widow? Married to John

4. What is your occupation? SAHM who feels like she works for the Hospital...lol

5. What are your passions? family, friends and of course scrapping

6. Are you a dreamer or a dream seeker? I think a bit of both

7. Are you happy with the way you life has turned out? I certainly am, even with all the bumps in the road - i don't think I would change much! Perhaps just a liver for Rani now!

8. Are you a scrapper and if so how many hours a week do you scrap? Most certainly am - when I have the time I try to scrap at least an hour a day

9. What do you want to do before you die? Travel and see Grandchildren

10. What are is your favorite food? Seafood - although at the Hospital I am known for my Fanta and Chicken Chips...lol

11. What is the food you hate the most? Brussel Spouts

12. What is the most embarrassing thing that has ever happened to you? Can't think of anything at the moment

13. What is the happiest day of your life thus far? Having my munchins and my wedding day

14. Are you a neat freak? Or a dirty house cleaner? Not a neat freak - 3 kids make that impossible....but like a clean house :) when it is possible


OK the kids had Jeans for Genes day at school today (a gold coin donation to wear casual clothes and the money goes to research) so I decided that after picking them up from school as they were already in casual clothes we would go straight to the Hospital before my Sister came in.

Rani is still classed as stable and was pretty happy again tonight. She reminds me of a Sumo Wrestler with her chubby face. Again she has scratched her face in a different place and it wasn't clotting to well. Also it must have been in a lot of pain as everytime she knocked it she gave out the biggest heartfelt cry.

Last night she must have lost her dummy as when Mum went in this morning she had a different dummy and Mum found her original under the cords for her TPN. Well she has to have them both now. Often having one in her mouth and the other in her eye. Of course being a scrapper I always have the camera handy although still trying to get used to the DSLR.

So here is Sumo Rani with her sore nose and 2 Dummies...lol and of course Rach her favourite Taggie :)

Today

Another great day with Princess Rani...Mum and a friend of hers came in this morning and then when I came in this afternoon...after being caught in the rain...I felt better with the big beautiful smile I got from Rani.

She is still 'stable' although she is bring up speckles of old blood in her vomit and this horrible green gunk (yep..thats a technical term) probably the stuff that has been sitting in her lungs, as she is not coughing anywhere as much as she was.

Yesterday Mum got a delivery of a toy an thought that perhaps I had ordered it...when I told her it wasn't me, after an internet search and a phone call she found out it was ordered by my sister Danielle in London. It is an adorable big horse. Here is a pic


Also another pic.. Rani loves Hi-5 and she loves holding the television remote/speaker to her ear and bopping to the music.

Although on a downer again we missed out on another liver again the wrong blood type. Rani has the most common blood type and no suitable liver has come up. Hopefully soon, as she is in the best condition she can be in to accept a liver now!

HAPPY, HAPPY, HAPPY!!!!

Well I went in a saw my bubba today, she is so happy. Bopping about, giggling, playing and just so happy. It is so good to see, as she has been so miserable for weeks.

She had another Albumin transfusion yesterday and the Lasix has managed to get rid of some of the excess fluid in her belly as her weight has come down a little bit.

On a good note her kidneys are getting much better as the days go by, so the problem must have been caused with her UTI.

OK so here as some pics of 'Rocky'. Thankfully today there was no need for the gloves and she hasn't managed to scratch the gauze off.

Sorry for the gross pics...but if you look at the one with the gloves on..there is a little drop of blood on her nose between her eyes...that is the tiny cut and all the blood is coming from that one tiny cut...so you can see why they are concerned about her clotting.

Poor Bubba

Well Rani is doing much better. She is so much more active and talkative...well making noises anyway. Even doing her first drawing for Uncle Stevie last night...lol

Unfortunately her blood clotting is 'stuffed'. Part of this disease is itchy skin and Rani loves to scratch at her face until it bleeds - this is because usually this is the only part of the skin showing. Well she has scratched on her nose and it has bled all day. It just wouldn't scab and the poor girl looked like she had been in a boxing match. One of the Nurse started to call her Rocky...lol...
We are still waiting to hear back if there is any medication that can help her clot, as it is a concern to everyone. To add to her Rocky name...lol..the bandaged her hands up to see if that would stop her scratching and she looked like she was wearing boxing gloves, but she would just rub her hands over the scratch and end up with blood on her gloves. So now there is gauze and a clear plastic cover over the scratch to see if she can't get it off, as she was just pushing the gauze off. My camera was left at the Hospital so I will have to upload 'rocky' tomorrow night.

The other concern is her dramatic weight gain...it i so funny we waited so long for her to gain weight and now she is putting it on to quickly. She went from 9.2kg yesterday to 9.4kg today. They think alot of it is fluid but it is to much to put on in one day.

But her cold seems to be clearing and she is breathing much better and the Transplant Co-ordinator told me today that they would be happy to transplant her if a liver came up now, as they were concerned that she would have suffered if they had have had one come in last week. As she will be immunosuppressed the flu would have taken over her body and she would have nothing to fight it with.

A Bit Sad

Well another Club Day has been and gone for Teagan...no awards but Teagan said she had a great day, so that is all that is important.

Again I was sick today, so Mum took Teagan to her Competition and John took Josh into the Hospital. After a quick talk to both Rani and her Nurse, I was saddened later in the day when John rang home. One of Rani's (well everyone's) lovely Nurses was leaving and today. She hadn't let any of us know. So I wished her luck in her new job over the phone, its a shame I didn't get to see her before she left. Sneaky lady...it will be very strange going to the Hospital and not seeing her there.

That is 3 Nurses that we really liked that have left so far...do we smell??l...lol

Of course it had to be the day after John had taken my camera into the Hospital. So he went and asked another Mother (a mother of a liver transplant child) to borrow hers, which she kindly did) and he got some photos for Rani's Hospital album.

So I was doing some calculations last night and as of tomorrow Rani will have been on the Transplant List for 10 weeks. Also on Wednesday it will be 15 weeks since Rani was admitted back into Hospital. I really hope that a liver comes up soon.

Hair, Hair, Hair...lol

Well the Princess is still doing ok..they have put the oxygen back on blowing directly on her as her levels were dropping to the low 90's but she is certainly more alert and playful and much more vocal.

Josh and Teagan came into the Hospital and saw Rani for the first time in a couple of weeks. Of course Nana and Grandpa had exhausted her...lol...and she slept deeply for the first hour and a half they were there but eventually woke up and played with them.

Then after dinner it was off to do the exciting curlers in Teagans hair. She has Competition Day for her dancing tomorrow and they all have to have curly hair. I was a bit concerned about the length of her hair, as she had it cut short after their end of year concert in December, but it was so much easier and quicker. So I think we will keep it at this length from now on. Although I do miss her lovely long hair. I guess it is up to her, as she was the one who decided she wanted the short hair...bugging me the day after the concert...lol

Her are some pics of the pretty curlers...i will share some more pics of club day tomorrow.

She's Back

Princess Rani is back in 5W in her own room where she belongs...well she belongs at home but her second home is 5W.

She is much better in spirits today...Mum even got a smile and a giggle from her and she spoke to me on the phone which of course had me in tears. Well maybe not spoke...lol. She loves the phone and reaches out for it when you are using it...we put it to her ear and she is so cute the way she holds it...she gets so excited and does her pelvic thrusts and smiles at who ever is in the room but only breathes down the line...pretty boring when you are on the other end...but today she actually made a couple of sounds in relation to what I was saying...it was, well to me very exciting...lol

The Nurses at ICU said see you soon as she was leaving, saying that we would probably get the call in the next couple of days...believe me we wouldn't mind...then I could handle her being in ICU.

UPDATE

Lets see since my last post it has been one all mighty roller coaster road with our Princess.

FORGOT TO MENTION - Buddah is now a whopping 9.1kg...not all her weight and as you can see from this pic, her poor face looks likes it is going to explode. Plus here is Mum who is in every day and in this pic you can see all the different tubes pumping different meds into her.I have taught John well he took this pic :)



The good news is that she will be moved out of ICU hopefully tomorrow..it would have been today but there are no beds.

I am guessing this will be short but sweet.

OK lets see Tuesday.

Rani is 11 months old today...I can't believe that in one month my little girl will be 1!

Rani was still pretty much slept all day. They became concerned with her platelet count as it is low and she is not clotting well at all. She was given another Albumin tranfusion. Also it was confirmed that she had a UTI which could explain the spikes in her temperature. She had another chest x-ray and heart scan. They were still concerned about her breathing and she still had the oxygen blowing on her.

Wednesday

Rani seems to be getting better. She was more alert and even enjoyed a bath. They are still very concerned about her breathing as she is panting and taking in to much Carbon Dioxide...they are going to watch her and if it doesn't improve the will have to put her on a ventilator. She is also given more antibiotics and a blood transfusion and platelet's transfusion.

Thursday

Well no need for a ventilator still not 100% but much better than she was. Her spleen is getting huge and ot only pushing into her pelvis but now up her ribs making it even more difficult for her to breathe. But they have taken the oxygen away and seeing how she goes without it. As I said earlier that would have returned her to 5W but there are no beds available. She was given yet another albumin transfusion and a gammaglobulin transfusion to try and help her with her clotting and platelet count. Today we also got a confirmation that she does indeed have a chest infection but unfortunately the bug she has there isn't anything that can be given that magically makes it go away. One of the antibiotics is helping break the phlem off her chest and she is bringing a lot of it up...so hopefully it will continue to clear and she will be finally rid of this dreaded long dragging bug.

So fingers crossed tomorrow she will be back upstairs.

Mum also got to meet a family that have been lovely to us with emails and speaking on the phone to John for hours. They had a little girl that went through the same dramas as Rani and has had her transplant and is healthy and running around. Mum thought it was great seeing them and seeing the outcome of a great transplant.

ARGH!!!!

Rani is being moved to ICU.

Thankfully it is not for a bleed....but they are concerned about her breathing and think that it is safer for her to be in ICU rather than on the ward.

It may be for only 24 hours but her Specialist has clinic today so we are waiting to hear more from him this afternoon. ICU is better for Rani as the Nurses are able to do things straight away as there is always a Doctor in ICU whereas the Ward Nurses have to page a Doctor and wait for them to respond to be told what to do or get authority to do what they had sugested.

So I will update when I know more.

**UPDATE**

We do not know how long she will be staying in ICU but things seem to have settled a little. It may be temporary as she had a blood transfussion today. But her temp which was sitting at 38.6 has come down to 37.1...she doesn't seem to be labouring as much to breathe...but the Specialist from the Austin Hospital also looked at her today and said that if she gets much worse she won't be able to have any of my liver.

She is as explained to us 'sitting on a fine line' and she can go any way...good or bad. But her liver is failing more and more everyday so the only answer to getting her better is a new liver.

I have a meeting with the Transplant Co-ordinator tomorrow to discuss the good, the bad and the ugly about being a live donor and then next Monday I start all my tests.

So I have spoken to my sister in London forgot the time difference and spoke to her at 7am her time...I guess it could have been worse.

Had the lovely Chris pop in this morning with some flowers to cheer me up for a quick visit...lol...only a couple more hours than she thought...lol

and now my brother is visiting Rani..so we will see what tomorrow brings.

BABY STEPS

Well they have decided to continue Rani's dosages of Antibiotics to every 12 hours for the next week as it seems to be having some small success.

John said for the first time in days she smiled at him and actually opened her eyes completely and sucked water from a face washer. Her mouth is so dry and sucking a face washer is one of her favourite things to do...she shakes with excitement when she see you wetting it at the tap and is very particular in turning it around and sucking it dry..lol...She has also been playing with her taggie (made by the lovely Rachael) which she absolutely loves.

Her respitory and oxygen levels still aren't fantastic but they are higher levels than they were yesterday but she still has the oxygen blowing directly on her face. They can not put it directly up her nose or it may dry all the snot in her nose and she wouldn't be able to breathe, so she is still getting suctioned regulariy to try and relive some of the pressure.

Thankfully there have been no more bloody nappies, so the meds must be doing there job.

Unfortunately her Kidneys are getting worse. The Renal Specialist came in this morning and said that if this continue this way she will probably be on Dialysis by the end of the week. They are again giving her a big dosage of Lasix, one to get the excess fluid out and two to make her kidneys work. There is another option but to do this should would be put into ICU until she had the transplant...so they are going to see wht happen with the Lasix as her belly is responding as it was down to 52cm this morning but her weight is up to 8.8kg.

She is still sleeping lots but at this time it is the best thing for her. Sleep herself better. So I guess we will have to wait and see what tomorrows bloods tell us.

Still Worse

Well our Princess is now on one on one care. Which is basically one Nurse that is in charge of Rani and no one else...and we have been given only Senior Nurses.

She was put on one on one care on Friday when she decided to scare Mum. We have been told that we need to press the Emergency button if there is any blood in her vomit. Well one of the times that she threw up there was some dark old speckles of blood. Mum didn't push the Emergency button but the Nurses button (something we never do) and 2 Nurses came charging into the room. They assured Mum because it was black it was old blood that was probably sitting in her belly from her leak. They would be more concerned if it was red and fresh and that if that happened we definately have to press the Emergency button.

We were woken this morning with a call from her Nurse to say that she had an ooze bloody poop. They are all sure she has a slow leaking varice but they thought it best to let us know that it had happened. John was on in his way to the Hospital. There have been a few more bloody poops and she has been put on a medication to stop the bleeding. The same med she was given last time this happened.

She is also having a huge dosage of antibiotics today and John said that it seems to be working. She is not really awake as often but she did acknowledge him and kick her leg (something she hasn't done in days)...when she is awake she seems to be in a daze and not really awake and then she just falls back asleep again. Most of her Meds are now going through her Central Line or into her TPN to try and stop her vomiting plus she is not awake enough to swallow them.

Her oxygen levels did drop to the low 80's but they acted it on it straight away and she is back up to 100% again.

So sleeping is the best thing for her...hopefully her body is fighting her flu..although all tests keep coming back negative for an infection even though when they suction her nose it is green. I am hoping that this round of antibiotics works better than the last lot. It seemed great for a day and then all the symptons that she had returned.

She has heaps of leads coming out of her Central Line. They have taken her off the Lasix dosage while the antibiotics go through so she has bloated again, but should be back on her Lasix again tomorrow as the antibiotics are given over a 24 hour period.

Getting Worse

Well things have gone even further downhill for our Princess.

I was put into a conference call meeting yesterday afternoon confirming that I was willing to be a live liver donor for Rani and that testing has to start ASAP as her liver is failing extremely fast. So hopefully by Monday all flu symptoms will be gone and I can start the work up...which I must say scares me a bit. But in the mean time we just hope that a liver comes in, as if I am the one that does donate I will be in a completely different Hospital to Rani and not able to see her.

She is still full of the flu and sleeping most of the day away. She just isn't herself looking dazed and not moving much at all.

Mum was quite excited today that during one of her brief awake times she actually kicked her legs while Mum read her a book...she didn't move yesterday.

Yesterday she had another Albumin transfusion the second in as many days and today she is having a blood transfusion.

She is bloating up with fluid again and her weight has jumped to a massive 8.6kg but her belly that usually sits at 51.5cm is up to 55cm puting even more pressure on her liver, spleen and stomach, lungs and heart.

She is not actually on oxygen but has a mask around her neck that is on, as she is so blocked with snot she pants while she is sleeping and at least this way she is taking in breathes of good oxygen.

She is throwing up constantly and there is always that fear that there will be blood in the vomit and then we are in big trouble as she will have to be put in ICU and placed on a ventalator.

The worst is hearing all this over the phone as I am still unable to go in and see her.

The Kidney Specialist came in today and doesn't seem to be as concerned about her function as everyone else but none the less wants an eye kept on the kidneys.

So we wait, hope and pray that a liver will come in soon and my baby can be out off this painful ride and on to a fun and exciting ride.

GRRR!!!!

I am full of the stupid flu again, this time I have it worse than I did the first time...I just can't seem to kick it and of course am not allowed into the Hospital to see rani. Both Josh and Teagan have had it...Josh a bit worse as I had him home from school on Monday.

Well lets see a bit of an update....

Princess Rani is still gaining weight.

Unfortunately her kidneys aren't coping very well (just to add to everything else), so they are now going to put her TPN back up to what it was and take out one of her diuretics for a week, as her belly isn't as full of fluid and being that she is on 2 different diuretics (one 3 times a day and one twice a day) they think that it could be adding to her kidney problems. So they are removing her from Lasix for a week (the 3 times a day one) and will test her kidney function again in a week and see where to go from there.

Of course everyone is hoping that a liver will come up soon and she is meant to be on top of the list for VIC and we know that she is the only child in-patient awaiting a liver transplant in VIC.

But her Specialist did come in the other day and say that she is the fattest pre-transplant baby (compared to others at the same age) that he had cared for and even he is amazed in her fat rolls...lol

My Sister had her blood test to confirm she is the same blood type as Rani on Monday. We now have to decide whether it will be Rebecca or me that go further with the testing for live donor liver transplant as they will only do work up on one of us. So we are trying to arrange a meeting with the transplant co-ordinator to find out the good, bad and ugly about the operation. Of course this was a last chance thing that we are doing. Both of us would prefer that a suitable liver comes up for Rani, but if we can help save her of course both of us want to help. It doesn't help that time does not seem to be on our sides and work up takes about 3 weeks. They have never had to do a live liver donor here before..they have come close a couple of times and a liver has come up in time...so hopefully the same will happen for us. As it will be horrible if I am the one that does give part of my liver as I would be in a different Hospital from Rani and unable to see her. So fingers crossed that neither of us have to go through it.

Rani also still has a horrible cough and she can't kick it either. Her nose is being suction a couple of times a day and she is having difficulty falling into a deep sleep as she finds it so hard to breathe but there is nothing they can give her to make the cough go away.

She seems to be drinking more orally and I am sure that if should could breathe out of her nose she would drink even more and is keeping most of it down. Her throwing up has lessened in frequency but unfortunately instead of vomiting a small amount a couple of times a day she is vomiting large volumes and they don't know what it causing it. John and I think it is probably due to the added pressure being put on her stomach by her swollen liver and spleen plus as she wasn't using her stomach it has probably shrunk and has to restretch and get used to milk again so can't hold everything in...well that is our theory.

The most upsetting thing I guess is that Rani just isn't as happy anymore. That she is really starting to feel the effects of her failing liver. She doesn't smile very often at all anymore. Everyone used to get big smiles when they walked into the room, Nurses loved it and even if they weren't looking after Rani would come in just to get a smile. But not anymore.....no smiles for Mummy or Daddy or Nana or Grandpa not even for Josh and Teagan. She just looks at you with sad eyes. She still has moments of happiness where she kicks her legs about and does her pelvic thrusts but they are getting less and less. It is just so hard when you know that there is nothing you can do to make her feel better. We can't even pick her up very often as the pressure in her belly just makes her cry and all she wants to do is lie on her back. I will be so happy when this is all over and done with and a distant memory.

Thank you everyone for all your lovely comments that you leave here they truly do make my day. :)

Feeling Robbed

After yet again another bleed scare...thankfully it was only in one nappy and there were no more...I was feeling very robbed.

Firstly I feel robbed that this is meant to be such an exciting time in our lives that we are meant to be enjoying this wonderful child that we created. That instead of being in a Hospital bed Rani is so robbed that she is almost1 year old and hasn't really had any major milestones. She didn't have the energy to do anything and now that she does she is in pain and bloated so can't do anything. She hasn't said her first word, hasn't crawled, doesn't even roll over anymore and just basically lies in her cot all day. Simple things that you take for granted or get frustrated when you feel that your child is behind in development that Rani has just not been able to experience. Josh and Teagan are robbed that they aren't getting a normal life as much as we try but spending every weekend traveling to and from the Hospital can't be any fun and when your parents get distracted with Rani dramas and you spend a lot of time living with your Nana and Grandpa they have got to feel that they are missing out.

It is amazing where you can draw strength from and believe it or not I draw mine from Rani, she is so happy (well most days) and takes most procedures like an old pro. I guess that is one agvantage to her being so young that she hasn't learnt to fear the Docs. She amazes me how she will lie there so still and quietly while they have to do what they need to and once it is finished she kicks about again. So to know that on most days I am going to see Rani chubby smiling face makes it orthwhile.

We can all see the frustration in Rani that she wants to do things and can't. I think the worst is waiting not only for a liver but being on edge everyday that something will go wrong...that a bleed will be worse, that at anytime she can end up in ICU...if I think about it to much I end up in tears. It just seems so unfair that this is happening to Rani if I could switch places I would do it in a heartbeat. It just seems that we are getting constant bad news...that things are failing and both John and I wake at ridiculous hours of the morning with horrible feelings...hence the reason that I am typing this at 1.30am.

We had the Parent/Teacher interview last week and obvioiusly this is effecting Teagan more than she lets on as everyday she tells her teacher that Rani is ok and still in Hospital or updates her with what she has heard us discussing. This is not something that a 9 and 8 year old need to be worrying about, they should just be enjoying being kids and nothing else.

We were admitted on Wednesday 19th April for 2 nights to maybe a week and Rani hasn't been allowed to come home. Believe me I know that this is the best place for her, that the TPN has been a life saver, that if anything does happen she is in the best care...but to not have your baby girl home for now 13 weeks and still not knowing when she will be home is hard on anyone to handle.

I mean it has turned everyones lives upside down including all of my family. I don't know how I would make it through this time without them. Mum and Dad have taken the kids most nights during the school week. Mum sits in the Hospital every morning (except for Wednesdays) so I can do things like pay bills, washing etc before I come into the Hospital in the afternoon. My brother comes in every Monday and Wednesday night and my sister comes in Friday nights and sometimes Tuesday and Saturday nights depending what she has on, just so John and I can spend sometime together. Then on a Sunday Mum and Dad come in for an hour or so visit.

Then to top it off Mum and Dad are letting us all move into their house for a little while as we don't have time to find another house to move to. So at least that is one stress of our minds and we can put our energy back into Rani, Josh and Teagan.

I am eternally grateful to my family and have no idea how we will every repay them for what they have already done and what they are doing...but Thank you just doesn't seem like enough.

Plus having friends and other family checking up on us to make sure we are ok and just knowing that you are thinking of us makes us feel very special.

Well

Friday
Miss Rani weighs an amazing 8.005kg....I can't believe that she has actually made it to 8kg...it sounded like such an unachievable weight as she struggled for so long just to get to 6kg..so it was amazing to hear that she had finally made it to the 8kg that the Surgeon wanted her to be at for the liver transplant.

But not to much celebrating because not long after the weigh in her specialist came in and told us that her bilirubin levels are raising due to the added pressure the TPN is putting on the liver. We knew this when she had the Central Line put in and the TPN was only meant to be a temporary fix to help her gain weight and put back all the necessary nutrients and vitamins that she was lacking.

To try and take some of the pressure off her liver they have tonight lowered the amount of TPN per hour and are wanting her to drink more from the bottle. Every 2 hours she has to have a blood sugar level test to make sure that they don't drop. The one after they lowered the TPN was better than the one they did before. But unfortunately as much as she wants to drink she is bringing it all back up again and her spleen is still hurting so we can't even sit her up while she is being sick.

So I have bought a bag full of dirty clothes home again tonight...I think I wash more of her clothes than I do of all of ours and she is in a bed all day.

Grandmas short visit ended and John and the kids took her back to the airport. Here is one of the pics taken at the Hospital before she left.














Saturday

Today Rani had another Albumin transfusion...they are now twice weekly. Although her belly isn't as large as it normally is and looking at the photo with Grandma, I can't believe how fat she is..lol

Although to top our day off we were told that now they are concerned about her kidney function...they are weighing all nappies, but also watching it from her blood. It amazes what information they can get out of blood. Her Specialist is trying to get her higher on the Transplant list because of her levels and that she is at final stages of liver failure. Although they have been waiting for the perfect liver to come in but we may have to get a good liver rather than a 'great' liver.

It sounds so blase' to say that we are waiting for the perfect liver when some family has to make the ultimate sacrifice and put their childs/family members organs up for donation at such a devesatating time in their lives. I am sure that the decision is not taken lightly and the day that we get the call to say that a liver has come in we will be forever in debt to the person who sacrifice made our daughter healthy. Of course John and I have always ticked on our licence to be Organ Donors but never really thought of the full effect that it has.

If you are not registered and are interested in registering, you can register online at: www.organdonation.org.au

SCARY!!!!

Well yesterday was my 'all day' day in the Hospital and it was like payback for not being in for a couple of days...lol...

Miss Rani was very happy in the morning when I got there, laughing and playing and then things went down hill.

She needed to get a culture taken from her nose to check on her cold. Basically they stick a small suction tube right up each nose and suction..they do it regularily to suction the gunk out of her nose so you can breathe. But when they did it this time straight away it started to bleed and lots. Everyone including me was concerned that they may have knocked a varice, one of the Nurses (not mine...lol) stayed with me for 40 minutes until her nose stopped bleeding. We took it as a good sign when she sneezed and we saw no bleed. Crisis overted.

THEN about an hour later I gave her her meds...the usually thing happened she threw up. But this time there was blood in the vomit. Logically I knew it was probably from her nose but as soon as I saw blood I burst into tears. The same lovely Nurse that had stayed with me again came in when she heard and gave me a big cuddle. We were all sure it was from the nose bleed and that she had just swallowed some of the blood. The Gastro team were called just in case and they thought the same thing and just to watch her.

Well the rest of the day went pretty uneventful. Managed to get Rani to drink 40ml in one go...she really isn't into drinking from the bottle. Plus saw that again one of the Mothers was back in with her daughter...then another was admitted and then I was told that another one from our old room was on the 7th floor...so the original room is all back in the Hospital!!!

THEN to cap my day when I changed Rani's backside I again saw blood in her nappy. Again the Gastro team were called, this time her specialist came down to see us. He was mildly concerned but because it was fresh blood he was sure it wasn't from a varice perhaps the poor thing is getting hemorrhoids. He still wanted her watched, so she was placed on hourly obs...but thankfully there has been no more bleeds.

So I was exhausted when my brother came in at 5.30 for his shift. Of course I was stuck in the middle of peak hour traffic so it take me an hour and half to get home. So when I got in I was so exhausted that I wasn't much entertainment for John's Mum who is staying with us until Friday, that I ate my pizza with them and went to bed. But she got to spend time with the other 2 kiddies when they finished school and is seeing Rani today...which should be exciting as she hasn't seen Rani since September last year.

Have to Brag!!!

Our girl is an amazing 7.91kg so close to that elusive 8kg that we would laugh about when the Docs would say that they wanted her to be at least 8kg for her transplant only a couple of months ago...we never in our wildest dreams thought that she would get to this weight. As the Surgeon said today at 8kg they have a 90% success rate, so we are happy that she is almost there.

Now to make things perfect we need the perfect liver to come in and for her to be home and healthy.

Update

Well the Docs have looked over Rani's X-rays and they can't find any fractures...so they like us are assuming it is the pressure that is being placed on her overly enlarged splein. It really is heartbreaking to see the tears and hear that agonising cry and know that there is nothing that can be done to make her feel better. Thankfully she is allowed Codine to try and relieve some of the pain, but because of the pressure she won't sit up as it hurts to much which makes cuddles harder.

We are very nervous tonight as we have a meeting with the Surgeon tomorrow morning that will preform Rani's transplant. We have been told by the Transplant Co-Ordinator the ins and outs of the operation but it is always different when you hear it from the Surgeon. Well perhaps not nervous but I guess meeting the man that we are puting the fate of our child into his hands is scary and making things even more real.

Although I was shocked tonight when our Nurse said that Rani will be 1 next month. I had to stop and think and yes next month it will be her first birthday. Most days I don't even know what day it is let alone what month...lol. So there is probably no way of avoiding her 1st birthday in the Hospital which is a shame...I am just hoping that she has had the transplant is well enough for a day pass.

Well here is a pic of John and the kids I took today at the Hospital.

Still Scrapping!!!!

Well I spent the afternoon with Rani until she fell asleep. We still haven't got the results of the X-ray...but they think the pain could be caused from the pressure on her spein as it is really enlarged plus her liver is also enlarged and as hard as a rock. When she is lying down you can see both organ sticking out from her belly.

She really is a trooper, always so happy...but we are concerned at how often she is throwing up...pretty much everything that goes down her throat comes back up and she is eager to take meds, a bottle and food we are not forcing anything into her. Her mouth is open and ready which makes it even more heartbreaking when it comes back up again. Her cold seems to have gotten worse but all the test show that it is not an infection cold and there is nothing that they can give her to get rid of it.....so we just have to listen to her bark.

Well before i went to the Hospital I scrapped and when I got home I did another page...I am addicted to BG atm...lol...4 of the 5 Lo's that I have done this weekend have been BG.

I SCRAPPED!!!

I joined in tonight with Memories and More Midnight Madness Online Crop and I got 3 LO's done.

I can't remember the last time that my MOJO was flowing like this..or that I did 3 LO's in 1 day.

So here is what I did tonight.

Good and Bad News

The good news is that they still haven't found a fracture in Rani's legs the bad news is that this afternoon she had an X-ray of the lower half of her legs to see if there is one there as she is still screaming when you lift her legs to change her nappy.

Also some bad news for John his blood is not compatable for Rani has is A+1 and needed to be A+2. So both my sister Bec and I know that we are O+ the same as Rani so we are going to start the work up. I wish that neither of us had to do this but hopefully a liver will come up and it won't be necessary for either of us to have the op. Not that we don't want to do it..it will be a killer to not be in the same Hospital as Rani and see her get better. So we will patiently wait.

John and I are off to see the Transplant Surgeon on Monday to discuss everything and actually meet the man that will be saving our daughter. We have seen him in the halls of the Hospital a couple of times but maybe for only 20 seconds. So we are excited but also nervous.

Well nothing much else to say Rani is not gaining a lot of weight compared to what she was. She put on 20 grams in 2 days. But she is 7.78kg...closer to the 8kg that they asked her to be which months ago just seemed like a fantasy.

Do you believe in Bad Luck!!!!

To add to all the drama that is going in in our life at the moment, we got a letter from the Real Estate Agent we rent from stating that the owners want to move back in and we have 60 days to vacate the property. Really we only wanted one more year, as we were getting ourselves together to build again. But it is just the worst timing in the world. And knowing our run of luck lately we will arrange to move and on that day we will get the call that the perfect liver has come in for Rani. They know our situation but are getting in now as our lease expires around the same time. I really don't have the time to run around and look at what is for rent...we are hardly home as it is....

Then I finally after getting better get to see my baby girl to be told that they think she may have broken her leg. She would scream in pain everytime we changed her nappy and wouldn't sit up, throwing herself back into a lying position. They did an x-ray of the top half of her legs but can't see any fractures. So they are (today) going to get a specialist to look at them and perhaps do more x-rays of the rest of her leg. The only thing that scares me the most is that she already has extremely weak bones and when she has the transplant she is put on steriods which makes the bone density even weaker...how many breaks will she end up with?

Well we found out that John is A+ - which he can use with Rani's blood of O+. We now have to wait and see if it is catergory 1 or 2 as only 2 can be used for the transplant. But then there are so many other tests that have to be done before we get to excited...so it looks like at least another 2 weeks or more of tests.. but 'IF" everything goes well it is elective surgury and could happen in around 3 weeks if the perfect liver doesn't come up first.

Well yesterday afternoon I picked up 2 very tired munchkins from camp. They both looked so exhausted, but just glowed when they told me everything they did. I told them they needed to go to bed early...they objected but within about 2 minutes I could hear snoring...lol

I scrapped

For the first day in ages I felt well enough to scrap and tomorrow am back to the Hospital to see my girl. It has almost been a week since I have seen her and it is killing me.

She is (as I am being told) doing really well. She is up to 7.7kg but still has the horrible runny nose.

John was having a blood test tonight to see what blood type he is to see if he is a match for person to person liver donation. I know for sure that Rani and I are the same blood type, but John thinks it is to risky an operation for me. This of course would only be a last resort if Rani absolutely needed a liver and there were none available.

So this is what I came up with today..not sure about it as it wasn't what I pictured but then again none of my pages turn out the wayI pictured them...lol...this is my little sister who is in the Hospital with Rani tonight.

Freedom...lol

Well a very excited Josh and Teagan left for camp this morning...so a quiet house until Wednesday. I think this is the first morning that I haven't had to wake them to go to school. They were ready and waiting at 8.15 this morning. But what a bad scrapping Mum I forgot to get them cameras.

Well I am still sick and unable to go the Hospital and see Rani. But from what Mum has told me she sounds like she has got the flu back. Her nose is completely snuffed up and she was put on oxygen last night and part of this morning as she was having some difficulty breathing..which they are sure is only because of her nose. Unfortunately she now has a barking cough, so they have taken some cultures to make sure it is not a viral infection but unfortuantely there is nothing they can give her to clear her nose.

The poor little girl just isn't having a good run of things. She has the worst nappy rash that they actually had to get pharmacy to make spme cream for her.

But she is obviously sleeping herself better, as I have been told that she has slept most of the day away. I wonder if she will stay awake for my brother tonight.

Speaking of my brother...lol...on Sunday I went to his tupperware party..yes his...lol...he got an certificate and knife from Tupperware Australia for being the first male to host a party...I was suprised at how many males turned up to the party...but it was nice to get out of the house for a little while and hopefully I will be able to see Rani soon.

Hope it was a Lovely Wedding

Well today Johns brother Mark is getting married. We were hoping to get up to Queensland for the wedding and to catch up with family but were unable to...

I hope you had a Beautiful Day today.

Best Wedding Wishes from all of us!!!

Depressed!!

Well I am feeling a bit down and depressed.

This flu that I have been fighting off for months has finally broken and I haven't been able to see Rani since Wednesday as I can not afford to risk giving her my cold...so it is killing me just getting updates from my family but thank goodness they are there for both Rani and I.

Plus there are other dramas with friends, family and other stuff that is making me one emotional mess...not in the least bit is all this helped with the impending transplant looming over our heads everyday...so I am not the happiest person to be around.

Rani is doing well. She is now 7.5kg and they are still happy with her. She also has a runny nose which is making it hard for her to breathe when she sleeps but not to bad. She is having another blood transfusion today as her counts are low.

I got my DSLR yesterday and am having a ball playing around with it...just can't wait to take it out of my bedroom...lol..and play with it.

Well short and sweet as it is back to bed for me.

Update

Well can you believe that after so long of dreaming and hoping to get to the ever elusive 6kg mark Rani is now 7.42kg. She is so chubby faced it is so funny to look at her, she is almost like a new child as she looks so different to the skinny little thing we had.

Her arms are doing really well....they took the slings off Sunday and suggested that they would heal themselves. Monday afternoon Rani started to use her right arm and now she is almost using it like nothing ever happened...it amazes me how quickly she gets over things.

Also by Monday she finished her last lot of antibiotics and it was like seeing a new child, she was happy, her eyes were clear and she was kicking about again.

I had the day off from the Hospital on Tuesday and took Josh and Teagan shopping to get the last of the things they need for camp, as they leave on Monday. Teagan is excited as this is her first camp...Josh of course is acting like the expert as he went last year...although I don't think that they are that excited that they have to go together...lol

On Tuesday Rani's specialist came in and told Mum that she is now ready for the liver. The thought actually made me feel sick. It has always been in the back of my mind but now it is so close it is scary...my heart beats so fast when the phone rings.

i had a tour of ICU yesterday and saw all the scary machines that will be connected to Rani will be connected to after the transplant.

Well the kiddies are going to the Circus with their Aunty Becca today so they are very excited.

They have been spoilt with Rani in Hospital. Nana took them last week to see Cars and yesterday to see Over the Hedge and today the Circus. But they have been very good about sometime having to spend some time at the Hospital so it hasn't been to bad.

I also got to speak to my sister in London last night...

Hope your move went well Kirst :)

10 Months Old

I can't believe that my baby girl is 10 months old today. It has gone so quickly even with all the dramas in her life.

She still doesn't look like a 10 month old most people that see her in the Hospital think she is about 6 months...she has finally made it into double O (00) clothing, only just as most of the stuff she wears is still OOO.

Although I am also a bit sad as I doubt very much we will have her home for her 1st birthday...we were secretly kind of hoping that she would have a new liver and be home before she turned one.

But with only 2 months until that date I am seriously thinking that she will be celebrating her birthday in the Hospital. I am still secretly hoping that she has had the transplant and is well into recovery so she can enjoy the day.

BUT.... I got my Krispy Kremes this morning...lol...John again suprised me but getting up early and driving down to get them. I thought he was going to the Hospital early...but they are YUMMY!!!

Much better today

Well now that they know exactly what bugs Rani has they have given her medication to get rid of it and you wouldn't believe the difference in her from yesterday to today.

She was so happy when I got to the Hospital, laughing and kicking her legs around. It was so great to see after yesterday.

They also decided to take the slings of her arms and let them heal themselves and I am guessing the use of her arm made her a lot happier.

She is still only using the left arm, so they are sure with her not using the right one it will heal fine.

Her temp was also back to normal and her eyes are looking almost clear.

So definately a much better day today.

Then my lovely husband was going to suprise me by having some Krispy Kreme Donoughts at home when I got back to the Hospital. So from the Hospital he took the kids down to Fountain Gate another 30 minutes out from our home and when he got there he was told there was a 2 hour line up (as it only just opened)...Poor Boy, then he had to drive back home again empty handed.

From Bad to Worse

Well the X-rays have been looked over and not only does she have a fracture in her right arm she also has one in her left arm. They are trying to keep her sedated on Codine to stop her moving around and have her poor little arms slinged to her body...plus she is also starting her antibiotics today to try and get rid of her cold...

AND to top it off last night her Oxygen levels went down to the 80's so she was put on Oxygen last night and again connected up to the machine today to keep an eye on her levels and her heart is beating fast even though she is just lying in bed...so everything is just being watched.

It is days like this that I wish she had a new liver or that the call would come in that the perfect liver is waiting for her as it is so heartbreaking watching her go through all these downs...it makes it hard to even imagine that there is a light at the end of the tunnel.

Well the news didn't get any better when I got to the Hospital. Rani had a tempreture - she was up to 38.6 degrees. It had come down to 38.1 when I left. We also got confirmation that she has an infection in her eye, so she has to have drops every 2 hours and confirmation that she also has another infection that was giving her the runs. So she had 3 doses of antibitics, then another transfussion of Albumin and then back on antibiotics for 48 hours.

The poor girl is just so tired and i would say very uncomfortable as she has her right arm tied to her chest and as she kept slipping her left arm out of the sling it has been put elbow first into the sleeve of her shirt but you see her little fingers going like crazy. It is funny sitting there looking at my baby one of the silly things that came into my head and later as I found out others was that she was trying to do a Dolly Parton Impression, you know when you use you elbows like boobs...lol..it was good to just laugh.

We saw rani's specialist today and he explained what was happening. He wants Rani to see a bone specialist next week as after she has the transplant the steriods she will be given also reduce bone density and with her bones as fragile as they are now we are probably in for more breaks. So perhaps the bone people can think of something to help strengthen her bones.


Rani doing her Dolly Parton impersonation...lol and I also took pictures of the widely exciting view from our room that I get to look at everyday. At least when we were in the 4 bed room we looked at a park and could see the Helicopter come in. You lose the view when you get your own room :( The first one is looking straight out the window the second one is if you push your head against the window and look to the right...lol

BUGGER!!!!

Well after sleeping all day for Mum I actually came to the Hospital to see a happy happy Rani. Usually she plays for Mum and sleeps the afternoon away.

Anyhow yesterday I had noticed that when i changed Rani's clothes and lifted her she cried when I touched her right arm...but she was playing happily so I let it be.

Today I noticed it again when I stripped her off for her weigh in that again she grizzled when I took her right arm out of her t-shirt. Then when I was playing with her I noticed that she had completely stopped using her right arm al together, just leaving it limp to her side. I tested her by waving her taggie over her and she reached for it only with her left hand. Now we have already worked out that she is going to be left handed and certainly favours this arm, but not to grab anything with her right arm was strange for her. I placed her dummy on her right side and she rolled on her side and grabbed it with her left hand.

When the Nurse came into to do Obs I told her. She was taking her temp and holding her left arm to her side so I again grabbed her taggie and again she didn't try to grab it as her left arm was being held. Once her temp was finished she imediately grabbed at it with her left hand. The Nurse called one of the Doctors to come and have a look.

Of course when the Doc came she had fallen asleep and not just a light sleep a deep sleep. Rani's other problem is she doesn't cry in front of the Docs. So even though when she woke briefly I could see her face grimace when he squeezed her arm she still didn't cry. She does it with most procedures which makes it hard for the Docs to know what is up with her. But after speaking to me and her Nurse they thought to be on the safe side they would arrange an X-ray.

At about 6.30 the machine came up to Rani's room and you can tell she has a scrapper as a mum...lol..she thought it was a great big camera and was smiling away.

We waited around and at 8.30pm Rani cried her self to sleep...we told the Nurse that it didn't matter what time she could call us with the X-ray results. We left and picked the kids up from Mum and Dads and just as ew walked in the door at 10pm the phone rang.

It was Rani's Nurse the X-ray results had come in and she has a fractured Humerus (the top of her arm) so they have put it in a sling and wrapped her up in a sheet like a baby and gave her some Codine (which will probably knock her out as she is not usually allowed any drugs like that) and she will be looked at in the morning.

We knew that she had fragile bones due to the fact that her body doesn't absorb much but it was a shock to hear that she has a fracture...oh well I guess it is just another hurdle for us to climb over.

WOOHOO!!!!!!!!!!

Well when I spoke to Mum this morning Rani is 7.01kg. Woohoo!!!

Unfortunately she is not well. Her eyes are gunked up (yep technical term) they are all swollen and every morning they are sealed shut. She is developing a full on cold...they took a swab of her eye but there is no major infection and today they took some snot samples to see if it is a viral infection...which is what they think it is. Plus she has diarehea again so they are weighing her every 8 hours to make sure she isn't dropping to much fluid.

Yesterday was my all day shift as Mum has Wednesday off. She took both Josh and Teagan to see Cars, so they were happy. Miss Rani wasn't well and slept pretty much all day...she was awake briefly for maybe 30 minutes at times and most of the time she was grizzly. She finally had her X-ray where she had to swallow some special liquid (can't remember the name). She was pretty good for it and swallowed well and laid still considering I was holding her arms and 2 other nurses were holding her legs...so I guess we will wait and see what the results of that will be.

So keep your fingers crossed that this bug doesn't last because in her state if the perfect liver comes up they probably won't give it to her as after the operation she is imuno-supressed(sp?) and her body wouldn't be able to fight the bug...grrr

Nearly There!!!!

Well today I had the day off from the Hospital and when I rang Mum to see how Rani was she told me she was up to 6.95kg. They have uped her TPN and Fat, so I guess by tonight or tomorrow morning she will be at the long dreamed for 7k mark.

Well I had a lovely day today. Teagan was picked up this morning to go Ice Skating with a school friend and Josh and I went out shopping. Both the kids go on camp when the school holidays finish, so we went out to get him new runners, PJ's, socks, jocks, coats and bags ready for Camp. We spent over 2 hours shopping which was amazing as Josh hates shopping, but I guess it was all for him. It was so nice to spend one on one time with him. Neither of us could remember the last time just the 2 of us went out together.

Also we had a little milestone with Rani. Her centre of gravity is so out with her budha belly...lol...but she loves to sit up in the cot (she has a chair) but sometimes she just wants to sit ith you supporting her back. Anyway yesterday Mum was holding her up while she was watching the cleaner and Mum moved her hand and she actually stayed upright for a little while. She did it for me briefly later in the afternoon...so another small tiny baby step on the way to her next milestone.

Nearly There

Well John has called from the Hospital and this morning Rani is up to 6.88kg...so not to far away from the 7k mark.

Thankfully even though she is still throwing up and no drinking anything the TPN is still fattening her up...I am so glad that it is now working so well. I must admit that to start with I wasn't impressed with this 'so called miracle' feed that was going to put the weight on. It took a good month to kick in properly and now it is working I am glad that they put it in.

She is so good with it all. It is also heart breaking that already she knows all the procedures. Yesterday before John took Josh and Teagan home the nurses came in to change her dressing and her lines.

The dressing is around the tube that goes into her chest and is stuck with two clear plastic like bandaids...and Little Miss Rani just lies there quietly as they rip (as gently as they can) the tape off...I mean these are stuck down for 6 days and I know how much it hurts when you take a bandaid off after that long...and this is on her chest. Everytime I see it I say that it is time to go home, that we have obviously been here way to long if she is not going to cry or move when they pull tape off her skin. It is so heartbreaking but beautiful to see that she is so brave already...so hopefully this means that when she gets the Liver she will be a trooper and get well amzingly fast.

Well yesterday was the 2 Nurses last days at the Hospital. I printed them eat a photo I took of them with Rani and we gave them a box of Chocolate. They both came in and said there good-byes and had cuddles...it will be strange not seeing them in the Hospital.

HAPPY BIRTHDAY LISA

HAPPY BIRTHDAY SWEETIE

I hope you had a fantastic night last night and are still getting spoilt today on your special day.

I was thinking of you last night and even stayed awake to send you and SMS just after midnight...lol.

Can't wait to see pics.

PHOTOS

well I finally took a photo of Rani's cheeks today...lol...as well as taking some with her and the 2 Nurses that are leaving for her Hospital album.

So look at that round face.....lol....even a double chin... :)

We have a meeting on Monday with the Surgeon that will be doing Rani's transplant to discuss everything so that we can sign the Consent Forms for when a liver does come up. I am starting to get really scared as it is becoming way to real...it always seemed that it was something that would happen in years to come and in reality it could happen at any time...just to muh to try and absorb :(

Another Update

Well things were going along just fine, Rani weight was up to 6.78kg but now she has got sick.

She can't keep anything down and she is throwing up about 6-10 times a day. It is horrible to watch as she is choking as there is really nothing to bring up except for the bile in her belly. So hopefully today she will be having an x-ray where she has to swallow some horrible stuff so they can check her lungs etc.

Also yesterday she had a huge amount of bloods taken again to keep her work up bloods for the transplant as up to date as possible, thank goodness for her Central line. It has two ports one for the feeds to go in and one for taking blood...no more needles.

Also yesterday another regular came back..in the Hospital atm we have practically the whole original room in...lol...and when I popped downstairs I ran into one of the other mothers that was in the room...so that was all 4 beds...lol...but she was coming in as an out-patient.

Well the kids start school holidays this afternoon and I have no idea what to do with them...it will be so boring for them to go to the Hospital everyday...will have to do some quick thinking...

Then I am also sad as 2 of the Nurses that I really like are leaving tomorrow - one to go on an overseas trip for 5 months and the other to another Hospital...it will be strange not to see them everyday. :(

Well I better make this quick as I have to go into the Hospital earlier so Mum can get back to pick the kids up at 2.30pm.

My Bubbas Cheeks

Isn't it funny, I suppose seeing Rani everyday I don't notice the full extent of her weight gain, but tonight my sister came in for night duty...lol...and when she picked up Rani I couldn't believe how big she was...her cheeks are absolutely huge...i must remember to take a pic of her sitting up. She has certainly piled on the weight and everyone is very happy with her progress. Her Specialist called her a Super Star and even the Head Transplant Co-ordinator dropped into to see us because of the Specialist remarks...lol

So her TPN was upped today, and we are slowly heading towards the minimum 7k mark, so with more proteins and fats going in it has to make the weight go up.

She is back on the transplant list tomorrow, although the Head Transplant Co-ordinator told us that if the perfect liver had of come up in the last 2 weks that would have given it to Rani, something our Co-ordinator forgot to say.

She is still classed as stable, although she is throwing up a lot more which is becoming a bit of a concern as to the risk of aggrevating her Varices, but she is also drinking lots more and seems to be getting a cold. So they are watching everything.

I, as everyone is sick of the Hospital and can't wait to take our baby girl home, but we know the best place for at the moment is where she is, and the nurses just love her so I feel confident even when not there.

So fingers crossed that we don't have to wait to long for the perfect liver and Rani can get out of the Hospital before her 1st birthday...which atm seems very unlikely.

Update

Naughty me...it has been nearly a week and I haven't updated anything.

There isn't a lot to tell you about Rani this week. She is classed as 'stable' and returns to the transplant list on Wednesday.

She is slowly gaining weight and has stayed steady at around 6.5kg all week, so that is good. We are so shocked as we only dreamed of the ever elusive 6kg mark and she would get there and have something happen and drop right back. But even though she is now on Albumin twice weekly she is only dropping about 50 grams after the treatment, rather than the 200grams she used to. So her Specialist seems to think that it is finally proper weight gain and not fluid gain.

She is also drinking her milk from her bottle and taking her meds orally well (occasionally having a hissy fit) but all in all well. She is throwing up at least once a day, which is very scary hoping that there is no blood in the vomit, but so far it is just flem and milk, so no one is overly concerned or though they would prefer that she didn't aggrevate the enlarged veins in her neck.

It is a long weekend so we have the kiddies until Tuesday morning...WOOHOO... Teagan is very excited as Hannah a friend she made in Hospital with CF is back in for a treatment, so she is off to the Hospital with John so she can play with her.

Well I also scrapped yesterday with the girls from Memories and More and got two pages done. It was so great to chat with you all and to scrap again.

Photos

Just for Lisa, Chrissy and Chris. Here are the photos as promised.

Don't you think Rani will kill me for these photos when she is older...lol

BUT check out the rolls on her legs...lol...although the other photo doesn't show her cheeks as well will you look at the size of her now.

WHOA!!!!

John has just rung from the Hospital...he has morning shift...lol....

AND Rani is now up to 6.42kg, that is another 50grams over night. It may go down a bit as she has to have another Albumin transfusion today and then the Lasix to get rid of excess fluid, but at least she will stay over 6kg.

Stay tuned Lisa, Chrissy and Chris, I have the batteries charged up and I will be taking some pics.



In the meantime I will share a LO I did on Miss Rani chewing her drip lines...lol

Our Little Budha

Well we are all amazed...Rani is finally starting to pile on the weight and you can actually see it. She has a (yes only one, but the first one) fat roll on each leg...everyone who see's her comments on them..it is such a mile stone.

Shockingly she now weighs 6.37kg.

On Thursday night when it came time for weigh in she had been 6.18kg in the morning and jokingly I said to John I hope it is 6.2kg and she was 6.31kg...we were shocked but so excited.

Her face is getting fat and her cheeks are huge. Thankfully it is starting to go elsewhere as her belly is still reasonably flat.

So this 2 weeks off the list could be a good thing and perhaps she will be 7kgs (what the minimum they want her to be) by the time she is put back on the list.

I wonder what she will be tomorrow????