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