Sunday Evening Update
Goodness what an original title!
It is Sunday evening here and the end of nice day with Aria. Â Nice and mentally challenging. Â It is hard to see her, puffy with fluid, pretty much asleep the whole day with a tube down her throat, three abdominal drains, one central line, one art line, one ng tube, one random hole where the last stoma was, a stoma, and to finish- a huge wound down the middle of her.
What a list.
Anyway actually it is only 2 drains now, one was removed today by a resident and a med student while I was having a shower. Â The nurse said Aria was asleep the whole time and didn’t even flinch.
But the surgeon who did her transplant was on rounds today and said he was really pleased with her progress.  Aria’s liver numbers are ‘pretty much perfect’ quote unquote.  She is peeing heaps today.  Unfortunately she didn’t make much progress yesterday with getting the fluid off but today was three doses of meds to help her pee.  The Infectious Diseases doc was around and he is also really happy with her progress, her white cell count is coming down, now 42- make that 34 this monday morning.  A pretty good volume is coming out of the stoma, showing that it is working.
The amount of fluid she has on board is the main reason why the breathing tube can’t come out but we are really hoping with all the peeing today progress has been made. Â They are changing her sedation and weening her off her currently drips so she doesn’t get withdrawals.
So things are really heading in the right direction.
New week next week, going to fully get into finding a place to live and getting my Nebraska state driving license. Â Both those things scare me ha ha.
16 Responses to “Sunday Evening Update”
Leave a Reply
Support Aria
There are many ways that you can support Aria.
- Bank deposit
- Cheque by post
- Contact us directly
Subscribe to updates
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 21 Feb at 7:32 pm
This a good news post. Excellent progress and steps forward. There is just nothing but hope ahead. You’ll do Ok with the drivers licence. 🙂
# 21 Feb at 7:47 pm
Hi,
Perhaps you could outline in a post the next steps – i.e. what could potentially keep you in the US and how long now that the transplant is done?
# 21 Feb at 8:46 pm
so pleased to hear your beautiful baby girl doing so well. im sure you will be fine with your drivers licence xx
# 21 Feb at 9:12 pm
Hi Josh. It is too early to answer both of those questions unfortunately. As to what would keep us here, that would be Aria’s health and the specific details of that we can’t be sure of. We know things will go wrong but would prefer to take them as they come rather than worry about what might be.
I made the first comment just yesterday, in passing, about perhaps one day hopefully getting home and the surgeon laughed at me and said ‘let us get her off the vent and out of ICU first’
# 21 Feb at 9:21 pm
yay good going Aria – shesh i guess if you’re used to Auckland traffic you will be fine just gotta get used to driving on opp side of road – it would scare the buggery out of me ha ha but then i’m a chicken plucka plucka
# 21 Feb at 9:31 pm
Great to read about progress! Slow, maybe, but still progress! Just take one day at a time. Any signs of spring yet?
# 21 Feb at 10:51 pm
Wonderful news about Aria. Anita you will blitz the drivers test. You go Girl!!! Just think of the options it will give you to be mobile and independant. Hopefully the snow is going and a beautiful spring is about to arrive. New beginnings for you as a family that you can cherish and embrace. XXXX
# 21 Feb at 11:47 pm
Great update about Aria, keep peeing little one, Anita you are much braver then me! I can’t EVER imagine driving on the “wrong” side of the road, AND managing to stay in my lane! LOL You go girl! 🙂
# 22 Feb at 12:41 am
Anita, you are way stronger than you know, I think.
Love you as always.
Ali xoxo
# 22 Feb at 12:59 am
What great news about Aria’s liver numbers! As you know those are dear to my heart too so I am very proud of Aria for achieving this so soon – we are still only new at good numbers 3 years on! Ha ha that is Lara keeping us on our toes. But anyway Aria is keeping you on your toes in other ways. You are such a brave girl Anita I’m sure you will be great at your drivers licence and by the way I loved the story in womans day today – very positive!
# 22 Feb at 1:33 am
Lovely to hear Aria is doing well. Just picked up a copy of the Woman’s Day magazine – has to be something pretty special in there for me to buy a copy – And was worth it, lovely article on Aria!
Thinking of you all, no mention above of any futher washouts, hoping this means the numbers there are all good too! Lots of Love to you all. Lis x
# 22 Feb at 2:37 am
Great to read your updates regularly. We have posted some of them on the preschool parents’ notice board, too.
Good to hear about daily little pieces of progress. God is good and does lead us one day at a time.
As for the driving: I say, FINALLY you learn to drive on the RIGHT side of the road, not the wrong one! I assure you, it’s much better on that side! Just follow the others! Love to all. xxxx
# 22 Feb at 2:39 am
pleased the surgeon and doctors are pleased with Arias progress 🙂
all the best to a new week 🙂
# 22 Feb at 2:58 am
Awesome.. that things are heading in the direction..
# 22 Feb at 8:43 am
Such an up lifting report. May your family and Aria continue on the good road.It may be bumpy at times but you are doing great.
# 23 Feb at 9:57 pm
thinking of you all