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????

WOOHOO!!!!!

For 2 days running Miss Rani has stayed over 6kg.

Yesterday when we left the Hospital she was 6.03kg, thinking she would be less this morning I was suprised to see that she was only down to 6.01 THEN tonight she weight an amazing 6.16kg.

The have uped the fat from 3.7ml per hour to 4.4ml per hour so that could have something to do with it.

On a sadder note she was taken off the 'active' transplant list for 2 weeks after her immunisations, as the measles one is a live bacteria and they can not risk her getting it if the liver comes in, so we know that we have another 2 weeks of waiting, waiting, waiting!!!! But on the good side she can gain, gain, gain that much needed weight.

But they also think that she could possibly have an infection in the entry point of her TPN (the veins in her neck). The area is fairly red and she was really whingy today, usually she is very happy and when they took a swab tonight, there was some green stuff...I'm guessing that is not a good sign!!!

And then again on the way home we saw another car accident near the Glen Shopping Centre, we saw another one last night as well. But this time it seems that while people were slowing down on the other side of the road to snicky nose cars have run into each other. We didn't actually see the accidents, just the aftermath...but both times there have been lots of police cars and ambulance, I hope they weren't to bad.

ARGH!!!!

I find it so funny that we probably put on and loose hundreds of grams every day yet with Rani we count everyone.

It is such a roller coaster watching her weight morning and night. On Monday night she was 6.03kg, then this morning (Tuesday) she was down to 5.95kg...only 50 odd grams, but so much for Rani. Then again tonight she was back up to 6.03kg again but will be way down tomorrow, as she had another Albumin transfusion and was weighed before she had her lasix, which makes all the excess fluid exit...lol

I am sad that when I got home I missed a call from my sister in London, I would have loved to speak to you Danielle, rather than just having a message on my answering machine, but it was great to hear your voice. :)

On Thursday I am being assessed by the Mental Health Department...lol...do you think they will lock me up and throw away the key...lol. No they (the Hospital) have an external person come in and have a talk with us so we can explain what we understand is happening and they get a feeling of how much we understand and that in general we are handling the situation. Plus they also offer different assistance things, which I will find out more about on Thursday...it just seems so bizarre that the Mental Health Department are coming to see me...lol

Well Miss Rani had the last jab of immunisations today. On Monday she had 4 needles, 2 in each leg and today she had one in her arm. Mum was there when all the needles were done and she said that she took it really well...i guess as sad as it is she is kind of used to needles already.

I was a bit sad today as Sue another 'long termer' she has been at the Hospital with her daughter for over 6 months and her daughter is 7 months old. Well they finally got the all clear to go home. Well they are in the Medi Hotel and then on Friday they head home. It is so strange walking past her room, as they had the Isolation room in front of ours and not seeing her there. I am so happy that finally they are able to go home as she has been through hell and back...but sad as I will miss our talks and seeing the big smiles I get from her daughter.

At least I get big smiles from Rani, it makes it so much easier to go to the Hospital each day and know that I will (hopefully) be seeing happy Rani. The way they are feeding her has given her so much more energy, this is the most active she has been in months. It really makes it hard sometimes to believe that she is so sick when she is laughing, playing and kicking around in her cot.

And thankfully since coughing out her Naso-Gastric tube she as taken to the bottle again really well. Her Specialist didn't want to put the tube back in, in case he knocked one of her varices and caused a bleed, but he would have had no other choice if she didn't take to the bottle, so we are all very relieved. Plus she looks so much better with out all the tape all over her face.

Well I guess we had some sort of a milestone yesterday...lol.... Rani legs have gotten that fat that we actually had to move up one more size in the bands for when they take her blood pressure...lol...it is so small a thing but so exciting for us...lol

Well this was only going to be a small chat about weight...lol...so i better stop now and head off to bed as I have early shift tomorrow, as it is Mum's day off.

PS Chris I will change the song tomorrow night...lol :P I got your email...lol

1 week and counting...lol

Well as of Saturday Rani has been listed for 1 week...but whose counting...lol

On Sunday John spoke to a family that have a daughter that has had a liver transplant and had pretty similiar problems that Rani has and also had BA. He spoke to them for hours and said it was great to talk to someone that had been through it and understood what he was going on about. I have to remember to get the number from John so I can talk to them as well.

Well Rani got immunised today, her temp is back down, so they have come in this morning and given her 4 of her 5 needles. They have to check whether one of them will react with some of her Meds, so she may have that one this afternoon. Bummer i thought I had got out of seeing that, as Mum is doing morning shift.

Well hopefully when Rani is weighed tonight she will be back up to 6kg...she was 5.998kg this morning...lol. She gets up to 6kg and then she has some sort of transfussion like Albumin or Blood and they have to give her a huge Lasix (diuretic) flush to get rid of the excess fluid which knocks her weight down by a couple of hundred grams (which doesn't seem like much but is) and then she has to try to get back up again. So fingers crossed that she doesn't have to have a blood transfusion for a week or so and can get over 6kg and stay around that weight when she is flushed.

Well I better get organised and off the puter so Mum can get back in time to get the kids from School and see how they went in their Walkathon today. :)

Another Day and Friends!!!!

Well another day in the Hospital has ended for our shifts...lol...my sister is in tonight.

Rani decided to give me a little scare as she was meant to be immunised today but instead decided to get a tempreture of 37.9..of course then no one wanted to risk giving her the needles, she was watched like a hawk and within 2 hours she was down to 37.1. Cheeky thing anything to get out of needles...lol

BUT I also came to a big realisation today when my best friend called me at the Hospital just to make sure I was doing ok that through all of this I have found out who are true friends and who are not. I am shocked that I either haven't heard anything or very little from people that I would class as close friends and regularily hear from people that I didn't think we were that close. It has been a real wake up call but somewhat shocking at the same time. I know that some people either don't know what to say or are trying not to bug me...but a quick phone call, SMS or even an email isn't really that hard. I hear more from friends in QLD that we haven't seen for years than some people that live in Melbourne. So after this is all done, I will be seriously looking at who we continue to see and can't be bothered with those that I thought were "true" friends.

Also it amazes me the kindness of people that I have never met and the RAK's that I have recieved. I will share a couple more from some people from the Memories and More chat group. Thanks girls. A beautiful taggie that Rani loves made my Rachael and a card from Caron that take pride and place on my photo board.

Nine Months Old Already

Yesterday Rani was nine months old, I can't believe how quickly it has gone!!! and to celebrate Princess Rani decided to pull her Naso-Gastric tube out. Unfortunately due to the severe varices in her throat that even if knocked slightly could bleed no-one wants to put the tube back and because she has been fed this way for so long she won't take a bottle. Thankful she is getting everything from her TPN feeds that go into the vein in her next, so her Specialist said that if there are no bleeds in 7-10 days (as she has stopped again) he will again put a camera down her throat and see how they are going and put the tube down at the same time. The nurse are having a ball...NOT!!!...trying to give her her meds orally...lol

Both John and I had another meeting with the Transplant Co-ordinator after John finished work last night. She has been moved back to a Category 3 - State Wide. We are kind of happy as this means that at the moment she is stable and is able to continue gaining weight, but it also means that she will not be coming home until after the transplant and that could be months and months. It feels some what selfish to think this way, but it affects not only Rani, John and I, but our other 2 and my whole family. It is very exhausting goinginto the Hospital every day, frustrating as she is doing so well atm and hard as John and I just don't get to see Josh and Teagan. Plus it is not fair to ask my family to put their lives on hold until we get the call and expect my parents to keep Josh and Teagan at their house during the week indefinately. I know that they are happy to do it, but we feel bad.

So we are happy that she will be able to gain the weight and having an even higher rate of a coming out of the op, but frustrated as we have no idea when!!

OFFICIALLY LISTED

So as of Saturday Rani is officially listed for a Liver Transplant Nationally.

She is doing really well considering she is so seriously ill.

Unfortunately she has lost some weight as they stopped her feeds as they didn't mix with some of the meds that she was given, but today she was put back on her feeds and fat and she had a small gain today.

Unfortunately even though the bleeds seemed to have cleared up, she is still at high risk to have a bleed at any time. So she has one on one Nursing and hourly obs. The only thing that the transplant surgeons are concerned about is her size and lack of weight, but the risk of a bleed (which could be fatal) outweigh the concerns...which is scary either way we look at it.

But she is so happy and so much more energetic than she has been in months which makes it so much harder to come to terms with the fact that she is seriously ill. Although I am so happy that she isn't in major pain and that we still get huge smiles out of her, I think it would be worse if she was crying from pain and there was nothing I could do to make her better.

So we are now waiting for the phone call that the perfect liver has been found and dreading the 15+ hour operation but excited that she will soon be healthy and happy. :)

OMG!!!!

Well what a day!!! - the understatement of the year

Last night there was blood in Rani's poo. She was checked over and they weren't to concerned, as she has varices that could bleed at anytime.

Well today she had another 3 nappies the same. Her feeds were changed, her meds were changed but I guess the most shocking thing is that as of tomorrow she will be on the Transplant List.

They haven't even finished the work up yet but things are that bad that even though she is not at the weight they want her to be there is no other resource, she needs a new liver now.

So as of tomorrow she goes on the National (Australia Wide) Catergory 2 instead of Victorian listing for a liver. Speaking to the liver co-ordinator today (or picking her brains for 2 hours) she said that is could be anytime from tomorrow that we get the call. She has had calls back in 30 minutes from listing to 2 weeks. So as you can imagine John and I and my family are in a bit of shock, we knew it was coming but thought it was still a while away.

She still doesn't weigh enough and they haven't even finished the work up for her to be listed, but her risk for a bleed is to high and the best way of making her better is with a new liver.

So we are feeling a bit scared, but after our talk with the Liver Transplant Co-ordinator today and trusting completely the Surgeons at the Hospital we are feeling a bit better.

BUT still in shock that it has come around so quickly, but so looking forward to having a healthy girl.

Wednesday

Well today was Mum's day off from the Hospital, so I was in bright and early this morning. And what did my Princess do...SLEPT until 12.00...lol....

Oh well I did managed to scrap a page while she was asleep.

Today was a much better day for her, she is completely off the oxygen now and back to 100%. Although in getting ready for her transplant she is having her 12 month immunisation down over the next couple of weeks, so today she was having her chicken pox's one.

Thankfully I got to leave early today as my borther is in tonight, so I didn't see her have to have the needle.

I got to take Teagan to dancing and have both Josh and Teagan home tonight.

Well nice and quick, as it is unusual to be home at this hour, but also as I am off to spend some time with my other 2.

Still Scary!!!

When I got into the Hospital both Mum and her nurse Marty were saying that she was very unsettled this morning, so they wanted to put her back on the heart rate and oxygen machine.

Well we were shocked as we watched her oxygen go from 100% down to 84% then up and down. Then when she fell asleep briefly her levels stayed at 84%. They even bought in another machine to make sure it was correct, but both machines got the same accurate reading. So the Nurse called her Specialists and they recommended that she go on oxygen, which she was still on when I left tonight. But thankfully the oxygen made her levels go up to 100% again. So now she has another thing up her nose and taped to her face...lol

Also today she had a blood tranfussion as her hemoglbin was low.

So she had things going into her from everywhere.

Later in the afternoon i managed to get some smiles, as she was so tired but was fighting sleep. She finally fell asleep until my sister came in and woke her, or as she says 'i just took her blanket off'.

So again after a stressful day, John and I were able to have an early night.

Plus tomorrow I will be home even earlier, as I am having the kiddies for the night and taking Teagan to dancing....sounds boring but I haven't done it for a month, so i am excited as my brother is coming in early tomorrow so I can go home.

OK short but sweet as I am off to bed, as I have to be up early to get into the Hospital in the morning.

This is a quick pick I took this afternoon while she was happy. As you can see the blood is going into her Central Line, which is good, no need for drips. And you may just be able to make out the oxygen thing (I don't know the name...lol) under her nose.

Scary, Scary

Well I think little Miss Rani gave Mum and I heart failure today.

She had her MRI and they also injected dye into her liver to see where the bile goes, well all went well with that and then in Recovery, that is when she tried to kill us.

As she had to be disconnected from her TPN feeds for the MRI they were watching her sugar levels as they can drop. She seemed to be doing ok in Recovery and then her sugars dropped to 1.8, they urgently ordered some glucouse for her but she dropped. Her blood oxygen level dropped way down, she actually went pale (very unusual for our yelow girl). She basically had a diabetics crash. She was put on oxygen, had about 5 Nurses and Doctors around her and for about 10 minutes did nothing. Finally she started crying, music to our ears and within minutes was back to normal chewing on her blanket.

We were finally able to go upstairs, where we have been moved into an Isolation room (in other words our own room, bathroom and all...lol), as we are going to be at Hospital for a long, long time. It is good and bad. Good that Rani won't catch any bugs from other sick children, Bad becaouse there is no interaction with other Mothers.

Well anyway, by the time we were back to the room Rani was back to normal and starving. So after geting permission I fed her some Fruit Gel while Mum held her and then she went to sleep at about 2pm and slept until 6.30pm.....Exhausting work stressing us out like that, something I and I'm sure Mum nevre want to see again.

Rani's Specialist came in later that day and said that he was going to look into why she was off the TPN for so long and that we wouldn't have the results from the MRI until probably tomorrow. Then I had a short meeting with the Liver Transplant Co-ordinator and next week I have a meeting with one of the Doctors from the Transplant Team. Rani still has a lot more tests to be done, so probably won't be listed for another week or more.

Later in the evening my brother Steven came in to sit with Rani so John and i could have an earlish night which I thought was nice. So we left at about 8.15pm and Mum is doing morning shift again tomorrow, so I am going to enjoy a sleep in, although I think I am out of practice with the kids as I slept through my alarm this morning and what a mad dash it was to get them to school this morning.

Here is a quick pic of Rani I took tonight after today's ordeal, chewing on a wet facewasher, he latest favourite thing as she doesn't get any liquid via mouth.

HAPPY MOTHERS DAY

I hope all you Mummies out there got spoilt on this Mothers Day.

I know I did...there was no breakfast in bed, but a sleep in which I think is better...lol

Then Josh and Teagan came in with their presents that they bought at the school stall. Josh gave me a Budha and Wishing Angel (for Rani so she will come home soon - how sweet is that) Teagan got me a Rock Necklace and a Peg Magnet with a little Dolly on it. She also bought another magnet but said it was from Rani. Each of them made me a card at school and while staying at Nana's they also each made a card from Rani for me. Plus they decorated some cut out flowers.

PLUS they went shopping with Daddy and also bought me a Angel Trinket Box and some more Photo Paper :)

Then I took Josh and Teagan into the Hospital later in the afternoon, as again John did morning shift and even managed to get a photo with my little munchkins.

Rani had a pretty good day today. She lost 20grams over night but had put it back on by tonights weigh in - so she is back to even.

PLUS last night after spending time with Josh and Teagan when they went to sleep I scrapped, and boy it felt great :)

Hope everyone had a great day :)

Friday and Saturday

This is where Rani's central line goes in and feeds her the valuable protiens etc that she needs. Plus of course she still has her tube that the milk goes through. The Central Line has two point, one for nutrients and the other to draw blood, so much easier this way.






This picture shows the different machines that pump Rani full...but makes it imppossible to take her out of the room.
The top two is her milk formula and the other is the TPN feed. The white machine is the pump for her formula and the grey machine is the pump for her TPN.
Down the bottle is another machine with a Fat Emulsion that is also pumped into her Central Line.

Friday
Well Rani was in good spirits today.

She had another Albumin Transfusion and I had to laugh when I saw that they had bought in an industrial power board, as the 3 powerpoints above her bed weren't enough for all the differnt machinery pumping different things into Rani...lol

They increased the amount of TPN feeds today but kept the NG Tube feed at 6ml per hour, so she is hungry and actually for the first time in months ate 1/2 a jar of baby food.

She had a weight loss but the Docs weren't to concerned as she gets a large dose of diaretics in the middle of the transfussion to get rid of excess water.

Saturday
John did the morning shift and I went in later to find Mum and Dad and Josh and Teagan already in the Hospital. John took them home and I stayed. We again have the whole 4 bed room to ourselves, as no one with gastro or throwing up can come in the room, as Rani is very open to any infections and can't afford to get sick.

Today we had a weight gain of 150grams so I am happy.

My sister and her friend came in tonight so I could come home early and spend some time with Josh and Teagan

Have a WONDERFUL MOTHERS DAY tomorrow

I got RAK'ed

Yesterday when getting home from the Hospital I found a parcel awaiting me from Blossies with a beautful wish box full of goodies in it.

The note from the girls at Blossies said that a little birdie (Chris Millar) had told them about our family.

So a HUGE THANK YOU

It is the perfect size to play with in the Hospital.

A couple of days of HELL!!!!

Lets see...

MONDAY
(World started collapsing)
Had a meeting with Rani's Specialist, 2 of his underlings and Rani's Nurse, to be told that on Wednesday instead of the MRI, i thought Rani was having that they were going to put a Central Line into a main vein in her neck and feed her TPN _ a special formula of proteins, vitamins etc....plus also do a gastroscopy (a camera down the throat) and do a bowel biopsy. Also that they suspected that she had bile lakes, which was could possibly be the cause of her not gaining weight and that he was going to speak to her Surgeon was happy to open her up again and see if could rectify the problem.

Later that day we were told that her Surgeon wasn't prepared to put her through an unnecessary operation until he saw the results of an MRI.

TUESDAY
Mum came down with a cold and didn't want to put Rani at risk, so i went into the Hospital early. Plus John and I booked ourselves into Rydges across the road, so that we were close by if needed quickly.

Again her lipase (a chemical in the pancreas) flared up again going to 2100 insead of the normal level of 250, leading them to think that she may also be getting pancreatitis...great...so again she was taking of the pump and drip fed. She was meant to fast from 4am, but instead she started at 4pm.

WEDNESDAY
After a horrible night sleep and feeling full of the flu, I walked across to the Hospital. John had to go to work, but Mum was already at the Hospital. Finally at 12.30 it was our turn to go down to the 2nd floor for her surgery. I hate having to sign the consent forms, listen to the risks again and hand over my baby. i am glad I had mum with me, as it was nice to talk to some one and have a distraction while the operation went on.

First her Surgeon came out after finishing his part, he was happy with the placement of the Central Line but wasn't happy with her clotting, but all in all he was happy and said that her Specialist was performing the Gastroscopy and would be out soon. About 20 minutes later he came out telling me that Rani was heading of to recovery. He said that he didn't find anything unusual in her bowel but was very concerned about her Verices (enlarged veins) in her esophagus, which he was concerned could bleed at any time, even showing me a picture. He said he would discuss more later when John got in after work.

About 5 minutes later our names were called to Recovery and to see my baby again was heaven. The 2 procedures took 1.5 hours, and hten we went back to the room. Mum left to get Josh and Teagan from school and Rani pretty much slept the rest of the day away.

At around 4pm she was hooked up to her new feeds and her fat emolsion that both go into her central line and given 6ml per hour via the NG tube ust so she has something in her belly.

THEN time for the big talk. (Where my world completely colapses)
Rani's Specialist came back to her room at 6.30pm and sat us down and told us that after speaking to the transplant team, it had been decided that there was to much damage to Ran's liver and that even an operation to try and fix the Bile Lakes wouldn't prolong the life of her liver so instead she is going on the transplant list. You could have knocked me down with a feather...we both knew it was coming but not this soon. Also they were extremely concerned about the Verices and had let ICU know about her. WOW!!! So we wouldn't be leaving the Hospital until after Rani had her Liver Transplant, so we were told that we would probably be in Hospital for at least another couple of months

Shocked and stunned John and I after settling Rani to sleep with some help from Codine went across the road to Rydges and had some dinner and some stiff drinks.

THURSDAY (Today)
Mum was again at the Hospital when I walked across. She said that I could have a sleep in but didn't really sleep.

We are trying to see the positives, such as Rani won't remember any of this when she is older, she will be able to become more active and no more Hospital visits (fingers crossed)

We now have to come up with a new plan, as usually the kids stay at Mum and Dads while Rani is in Hospital, but we can't expect the kids to stay with them for 3 months let alone expect Mum and Dad to have them that long. So Mum and I were trying to work out some kind of Roster.

Rani was apparently happy this morning, but got more upset as the day went. There was a big meeting about Rani at the hospital today, with everyone from ICU, the Gastro Team, Surgeons even Pharmacy. They arranged a plan incase her Varices bled with ICU and has a kit and instructions at the top of her cot, which make me even more concern, although we were told there was only a 30% chance of this happening.

Unfortunately due to this risk she was unable to have any medication to help ease the pain, she had finally hit total exhaustion by 9pm, so John and I left her to sleep.

Mum is doing the morning shift so I can catch up on some house and living stuff...lol and I am now off to bed, to sleep soundly (I hope) in my own bed)

OK Today is????

OK I am not keeping track of days very well, so I will go back to Friday :)

Mum went in to the Hospital in the morning. Little Miss Rani was still chock-a-block full of the flu and very miserable. Unfortunately due to her liver not working properly she is unable to have Panadol to try and relieve some of the pain.

Test wise we found out that the sweat test had come back fine and that she may need to have the excess bile they saw in her liver from the ultrasound drained manually, but they would discuss this with me when I got into the Hospital.

Meanwhile I am at home (inbetween calling mum...lol) booking John and i 2 nights at Rydges (The hotel across the road from the Hospital).

So I checked in and walked to the Hospital to see my snotty little girl to be told that she needs an MRI as they think that Bile could be leaking out of her liver and this could be the cause of the weight loss...of course only one other case of this has happened here, Miss Rani has all the Docs and even the Surgeon who did her op baffled. So if this is the case it means another operation, so we will wait until Wednesday and see what happens with the MRI.

SATURDAY

HAPPY ANNIVERSARY!!!!!

After the most horrible night sleep on the worst matress we woke to celebrate our Wedding Anniversary...John got a watch and had to go home and get my present and feed the dog. So how romantic, I went to the Hospital and John went home briefly. Well things had gotten worse for Rani overnight, her nose was being suctioned every 30 minutes, they were monitoring her oxygen levels and had ICU on stand by.

THEN the Docs came in to see me and her pancreas was not working as it should and the levels were sky high, instead of being in the 200's they were in the 1600's. Also to top it off she had lost 220 grams in 2 days. Her body was using every ounce of energy to fight of the flu, so her pancreas was doing overtime and obviously had had enough. So for everything to settle down she was taken off the continous feed and put on a drip for 24 hours. The fun it is seeing the drip needle going in, and even better when the vein in her right hand decided to fail after the needle went in and we had to do it all over again in her left arm.

We had a small amount of freedom, so we went down to Maccas for some lunch and John and I felt so bad as Rani was on Nil via Mouth, so she couldn't even suck on a chip.

Later that afternoon she was hooked up, just as my brother arrived.

Everyone in our room left on Saturday and for about 3 hours there was only Rani in a 4 bed room, later on we got one other person...I have never seen the Ward this empty.

Oh yeah when John came back he had some flowers for me, a beautiful pair of earrings and a bangle...I got very spoilt.

Then my sister came in at about 7.30 pm and John and I left.

We were going to go down Lygon Street for some dinner but were both so tired from being in the Hospital and physically drained from the dramas of the day that we decided to eat at the Hotel Restaurant...I had some beautiful Garlic Prawns and John had Lamb Shanks...then we both crashed in bed from pure exhaustion.

SUNDAY

Well it is amazing how quickly Rani reacts to things. Obviously the 24 hours of no feeds did her a world of good...her nose has pretty much cleared up and she was very happy today. (or should I say part of today)

She was put back on Continous feeds at 2pm and they have lowered the drip and if her levels come back low again (as they went down overnight) they will take her off the drip tomorrow.

Josh and Teagan came in with Mum and Dad and John took them home so they could have an early night for school tomorrow. Mum and Dad stayed until about 4 and then it was just Rani and I.

That is when she got sooky, so was so tired but wouldn't sleep unless it was in my arms, she didn't settle until after 6 when I ran downstairs to get some dinner and came back to find that she was crying again.

Finally she settled at 8.30pm and I left at 9pm as I say she will sleep pretty solidly tonight and I will go back in tomorrow to see what her Specialist has to say.

I hope all this made sense as I am desperate for sleep

BOO HOO!!!!

Well we had fingers and toes crossed that we would be leaving the Hospital by the end of the week...but NO it seems we will be in for at least another week :(

NOW...Rani has developed a horrible cold, the poor thing they have to suction her nose, just so she can breathe, so of course she is using all her energy to fight of the cold, which in turn means that she is losing weight...but way to much weight. From this mornings weigh in to tonights weigh in she lost 100 grams in 12 hours!!!

We keep getting so close to the 6kg mark again and then she goes backwards...both John and i are getting very frustrated by the whole situation...it seems that we are just sitting in the Hospital watching her being fed by the pump and getting the same Meds (except for the 4 new ones) that we were giving her at home. And now she has managed to catch the cold that is going around the ward. I personally think that she would be safer at home.

I want some sort of a normal family life, we haven't seen our other 2 since Wednesday morning, as they are staying at Mum and Dads. Mum is going to the Hospital in the morning, i go in the afternoon and John comes after work. I guess I have just had enough, it has been 16 days and I guess I look at it like to start with she needed the tranfussions of Albumin...but now apart from being weighed morning and night, there is no difference to her being at home. Even our Specialist said the same thing on Monday as well as telling me we could possibly go home at the end of the week.

So since my last update, Rani has had an ultrasound...which suprise, suprise showed that her liver has become worse!. Mum was there when that happened and she said that Rani was so excited to be in the lift and of the pump and out of the room, smiling at everyone, she probably thought she was going home :(. then today she had a sweat test, and we have had 24 hours of poop collection - to check fat absorbtion (what a fun job that would be...NOT!!!) and they have put up the calories and intake of her bottles.

So hopefully tomorrow we will have the results of all of these tests and find out what the go is.

plus to make me even sadder, the lady next to me (Zena) the one I made the card for, her daughter is able to go home tomorrow (she was in 3 days before me) and the lady across from us whose daughter also has BA is going home as well, so it will be an empty room until the new lot arrive. We thought/planned we would all be leaving together..oh well not to be.

We also hoped that Rani would be out on Saturday as it is our Wedding Anniversary and we thought it could be a double celebration - but it looks like we will be in the Hospital Saturday and my sister is coming in to sit with her Saturday night, so we can at least go out for dinner :)

Well!!!!

Lets see..we were hoping to be home by the end of the week, but it doesn't seem that it is going to happen.

Rani has lost more weight, so until they can work out why she isn't gaining weight, she is staying in the Hospital.

Today she is having a sweat test to see if other organs are functioning as they are meant to, she has also been put on another 2 drugs to see if that can stimulate her liver to absorb fat and until they see a steady weight gain daily then Rani can come home and then we will have to go back into the Hospital every couple of days for weight and bloods...I don't care what I have to do to have us all home as a family again.

Yesterday I got a beautiful card in the mail from the 'Friday Croppers' in QLD - Chris Millar, Penny, Kylie BB, Anita, Jacqui, Ange, Tracey, Rachel, Sally and Sharon. Thanks Girls



Also yesterday we celebrated the little girl next to us 2nd birthday, it was actually last Friday but she was to sick to even have cake, so we did it last night. I took some pics and made this for her mum last night. Sorry not the best pics, but you get the idea...lol













Then Rebecca (my sis) and Mark (her next door neighbour) came into the Hospital to see Miss Rani.

Mum is doing the morning shift today...

HAPPY 60th

HAPPY BIRHTDAY DAD

Looking forward to having dinner with everyone tonight. :)

Well had a lovely dinner of Chinese, some laughs and nice to have a decent meal rather than nuggets from Maccas at the Hospital...lol