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
5 comments:
I cant believe how chubby Rani is looking, and over 8kg woohoo. I hope a liver comes along soon Mel and I agree with you regarding organ donations...such a wonderful gift....good luck!
Oh Mel look at how chubby she is, it's so amazing that she is at that 8kg for sure! :-)
I truly understand the overwhelming gratitude your family will feel, when dad had his heart transplant I felt just so VERY grateful to the donors family, I can't put it into words at all.
On a side note, I had to renew my drivers license this week and they no longer have the option for people to say they want to donate on it! You have to actually register elsewhere to do that now(I should find out the exact place) so the best thing people really can do is to TELL their family of their wishes. With everything we went through I *know* what a precious gift it is to donate, a blessing beyond description so it goes without saying we would if we were put in that unimaginable position.
Give your darling girl a Chrissy cuddle from me ok! :-)
Love Chrissy xx
Must have tired eyes or you've updated your blog with it?? Probably me, was getting a bit sleepy late last night! LOL Thanks for the donor link Mel!:-)
OMG look at those cheeks!!! I am so pleased she has reached this milestone and so quickly...
I am all for being a donor when my time comes as with the kids - god forbid. Its is the ultimate gift of living. My family know how strongly I feel about this so I am lucky that I know they would follow my wishes.
I continue to think about you all. Big hugs mel. xoxoxo
Wow that last 2kgs came on so quickly! And I can't believe how much Princess Rani's hair has grown. Hoping that you all hear good news about a liver for Rani very soon.
Hugs
Anna
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