Awake but….
….perhaps it would be better if she was asleep.
Today was another day of progress. Â Aria went back to the OR and they did another washout and took cultures. Â Unfortunately there still might be another washout, will have to wait and see if the cultures grow anything. Â The surgeon said her new organs are looking really great and her bruised kidney plumbing is better too.
Aria is awake and doing well. Â I really feel for her. Â She has this nasty hard plastic breathing tube in her mouth and down the back of her throat, must be awful. Â She can’t speak of course but she has made it really clear she wants it gone. Â Such is our Aria. Â She can say no and is trying to play with her toys and watch some TV with her one puffy hand.. Â She is still groggy and tired.
Her wound is amazing. Â It is open because they keep having to open her up to wash her out. Â But today we learnt that they don’t plan to sew her back up. Â What!? Â Yup the wound stays open and fuses together by itself. It is sewn up at the base so you can’t see her guts (!) but the flesh isn’t. Â It is hard to look at actually, it am find myself feeling a little bit ill in my tummy when I look at it.
Sometimes I look at her and think ‘What on earth have we done to her’. Â Which is silly I know. Â Aria did not have long with us, the team here told us that she wouldn’t of made it to the end of the year. Â And the two days prior to transplant she was really sleepy and the team was concerned. Â We had no choice and where no other options. Â But still it is desperately hard to watch her suffer and struggle.
Don’t get me wrong, she is making fab progress and once that breathing tube comes out things will be better. Â Her colour is better to and she is losing the fluid slowly, peeing it out. Â She is totally amazing I can’t imagine how hard it must be.
12 Responses to “Awake but….”
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# 10 Feb at 9:39 pm
From personal experience having had a tube like that down my gob only 4 years ago Anita, while it looks scary, it’s actually not all that uncomfortable. It’s a nuisance, but not uncomfortable or painful. Just keep an eye on Aria’s lips drying though :). Great progress though!
# 10 Feb at 9:44 pm
This is such great news! Aria you are a real warrior! Keep up that fighting spirit but don’t fight the nurses!
Hamish and Anita we are right there with you! Hugs and prayers for you all.
# 10 Feb at 9:47 pm
Great news.It has to be terrible watching your little one go thru this but each day will get better and knowing the transplant is over and went well will keep you going.
The fact that God is in charge of Aria is such comfort.
# 10 Feb at 9:49 pm
Hey Nine. I can’t imagine how hard it is to watch your baby in this situation. Aria is by far THE MOST amazing human I know. She has a strength and resiliance that most adults don’t. I wish I could be even 10% as brave, patient and compliant as she is. She will get through this with flying colours – I have no doubt. Thinking of you at least 100 times a day. Wish I was there by your side. Love you all. xxx
# 10 Feb at 9:53 pm
Understand what you are saying, there is a battle if you do and a battle if you dont, so much of life is like this! Imagine it is real hard watching Aria struggle with that tube, how frustrating for her and you both!!! She is doing just fantastic though, thrilled for you guys! Hang in there, am sure each day is a day closer to great days! Still very much in our thoughts. x
# 10 Feb at 9:59 pm
I do not understand about leaving her open? Does she have it wrapped up tightly? how come its no bleeding? will it scar badly? is an open would more prone to infection? can she split herself open coughing or moving about?
do they have her only laying flat still?? Im sorry so many questions….
I just want you to know i am praying for you and feel blessed that i had the chance to stumble upon your site and follow this amazing journey with you! I know we will see Aria come to complete healing and I know shes an incredible girl! I know she ahs a huge road ahead of her but I know she has two amazing incredible parents and I know that she has a brother and all her family, friends and supporters rooting for her too!!
Much much love to you guys!
I would LOVE to send you a letter! Do you have a postal address over there?
Bless you guys…
Kylee xxx
http://www.caringbridge.org/visit/kyleeblack
talktokylee@hotmail.com
# 10 Feb at 10:22 pm
yea, these early days with tubes etc are no fun but they will pass, even as the fluid too will gradually drain away. I was amazed at how much I took on board but eventually I saw my hands and feet again! God has lead you each step of the way and will continue to lead and never leave you or forsake you. We are with you in prayer. XXX
# 10 Feb at 10:35 pm
I understand how difficult it must be watching Aria go through and to be honest it’s what worries me the most when it is Ellie’s turn. But Aria is powerful beyond belief and I hope the tube can come out soon. Prayers that the infections stay away.
Sharls (Ellie’s mum from LiverFamilies)
# 10 Feb at 10:43 pm
i am thrilled that she is awake…. how do they intend on keeping her still while her wound is open?? she has been on her back for almost a week now…. her little body must be aching to move…. what a brave little girl!! dont know if i would have handled that! its amazing how advanced the medical side of things are… especially reading that they do not intend to stitch her up!! wow! …. bet you must have been really happy to see her wake up!! all of the best for today…look fwd to hearing from you tomorrow!! big hugs and kisses to her and to you!! in our thoughts and in our prayers…
# 10 Feb at 11:34 pm
Great to hear Aria is awake and showing her personality to you all! She is a wonderful wee girl and great at communicating. None of this is going to be easy for you buddy but take it day at a time and know that one day you will look back on this time in just wonderment and not think of the gross or painful bits at all – you will just see the amazing girl that you have achieving all sorts of things in her daily life.
# 11 Feb at 2:03 am
praying for you all esp Aria
this is all just for a time
and while its hard
its all worth it
remember one day shell be just like every other little girl
and always so beautiful and adorable
# 11 Feb at 2:20 pm
I keep coming back everyday to see how Aria is, there was even an article in our local paper about her at the beginning of the week (before her surgery of course).
Hopefully it won’t be too much longer before she’s able to get up and move around, I can’t imagine how hard it must be for you guys to sit and see her like that, BIG HUGS!!
XX