Wednesday, July 19, 2006

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. :)

9 comments:

Peta..xx said...

oh Mel, im so sorry about poor Rani not being her happy self at the moment..
Its a wonderful thing that you & your sister are doing for your beautiful little girl, but fingers crossed a suitable donor will come up before then and you can spend all your time with her while she is getting better...
Fingers crossed that is real soon..
thinking of you all,
lots of love, Peta..xx

Anonymous said...

Sorry to hear about your flu Mel and I wish you a speedy recovery...it must be so hard for you not to be able to see your gorgeous little girl.
I hope your princess is beaming her big smiles to everyone really soon.
Hugs
Anna

Rachael said...

I'm going away for the weekend and truly hope that I can come back and read some positive news for you guys. Remember to also take care of yourself Mel, I worry about you just as much as Rani these days.
Sending love
xoxoxo

Bev said...

you poor thing with the dreaded flu again...most likely you cant shake it as you are so tired and worn out....I am so glad the specialist commented on ranis fat rolls...she had to work so hard to get them... I will be away for the weekend too, so I will catch up when I get back....please please let it be the news you are all waiting for

Robyn said...

Not the flu again!! Poor thing you just can't win! I truly hope things happen soon for you all and little Rani is feeling better.

connie said...

Oh Mel...i hope you r feeling better really soon...Sorry i havent dropped by in a while...just be flat out busy but i have always had Rani on my mind and praying she is doing well..and by the sounds of it she is!!! I started calling Jorja "Chubba" as she was getting a little big there..but now i think the title of "Chubba" should be passed onto Rani now!!!!...lol. Mel Rani looks so beautiful with all her lovely rolls!!!
Thinking of you all ALWAYS!!!!
Love Connie...xx

Beck said...

Hi there, I stumbled across your blog this morning and I literally have tears in my eyes. You are such a strong woman, Rani is lucky to have you for her mum. My thoughts are with you and your precious family. Beck XXX

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