Highs and lows
Will start of with the big high of the day – SMILES FROM ARIA 😀
It involved me making two of these ‘alien’ creatures run and crashing into each other, I knew that would get a laugh.
It was the first smiles since transplant so it was hugely exciting.
The lows are
Aria has cultured Staph Epid in her blood.  This is a bummer and we are pretty disappointed.  This is a bug found on skin and has either come from bugs tunnelling thru her central line site (unlikely because the skin around it is looking good) or poor line handling from the staff here.  All and all people are pretty unfazed by it around here, kinda like ‘oh that just happens when a line is handled a lot’.  But we will chase and see if we can get better answers and we have some ideas to improve things so hopefully they will listen.
The trach is taking some getting used too by Aria and myself.  I feel pretty anxious today.  She wants to drink heaps but can’t because it isn’t going in the right place.  She drank about 30 mls and it got into her airways and her O2 stats dropped.  It was a little hairy but they suctioned her.  It is hard not being able to do anything for her, I just have to buzz and hope someone comes and quickly.  I wish I could just do it myself.
Argh- around 4.30 all this blood started coming out of her wound vac and into one of her drains.  Little scary.  They took down the wound vac and the surgeon came and he doesn’t think it is anything major.  Phew, but the wound vac will stay off for awhile to give it time to heal.
Anyway focus on the positives and forget the negatives right?
17 Responses to “Highs and lows”
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# 23 Apr at 5:09 pm
it is great that she is laughing but I hope she gets better soon
lots of love
Daniel
# 23 Apr at 5:23 pm
You are one of the most positive ladies I have ever met xxx luv ya to bits. P.S brill cook on top xxx
# 23 Apr at 5:24 pm
Sounds like a scary day, its always frightening when blood or O2 sats are involved. As you’ve said try and focus on the positives although I imagine that can be hard sometimes. I’m so pleased to read your beautiful Aria has given you a smile, that is just the best news!!
Take care and I hope your weekend is filled with more beautiful smiles from both your lovely children.
xx
Lisa D
# 23 Apr at 5:51 pm
Yay for smiles!!!!!
# 23 Apr at 6:16 pm
Bet that smile was worth a million!!!!!!Giving thanks for the ups and praying for the downs to go away. Always look forward to the news. Thanks
# 23 Apr at 8:01 pm
I knew you would get a smile soon! Thanks for updating us so often. Praying those nasty bugs go away really soon. Blessings to you all,
Judy.
# 23 Apr at 8:48 pm
Praise God in the highs and cling to Him in the lows.
Keep smiling little girl! That is a tremendous milestone and not easily forgotten. Would we be too greedy if we asked for a smile from her too? (Captured on camera) If she laughs too much will that damage the tissue healing progress? She must be pretty fragile inside.
Love y’all
# 23 Apr at 9:43 pm
love and hugs. Praying for you always. Great to capture that smile.
# 23 Apr at 10:01 pm
I bet seeing those “alien” creatures just made Aria’s day. 🙂 It would be scary to see blood coming out of anyone, like that! I would chase the staff down too! Focusing on the positives is good! I hope tomorrow goes better for you! God Bless!
# 23 Apr at 11:07 pm
I hope all goes well and that the infection clears up quickly am praying for that and for serenity for all – hugs from us
# 23 Apr at 11:51 pm
Oh man – I forgot that you are not doing all her cares any more – that must be so weird to adjust to. You and Ham are almost fully qualified nurses now aye! I think you need some more ‘training’ so you can keep it up in PICU!!! Just kidding but I know you must feel a bit of a spare wheel having to step back and be ‘just’ a loving parent instead of nurse/doctor/specialist as well. Bumm about the infection, I hate when they think its normal and ok because of the way things are, it is frustrating, but yahooo for a big beautiful smile, you should be able to live off that high for a few days right!
# 23 Apr at 11:58 pm
what a beautiful way to start the day 🙂
praying the bug gets sorted quickly
and the staff pay more attention to the way they do things
praying re the fluid intake the the trach
praying she continues to heal
HUGS
# 24 Apr at 2:33 am
Keep on smiling, look forward to many more in the coming future,
Love and prayers to yous all
# 24 Apr at 3:01 am
Your little girl and the entire family is an inspiration to us all. I do hope her care team listen to your ideas if they are any good they will.
# 24 Apr at 3:24 am
YAY for big smiles Aria!!! Please keep on smiling! 🙂
# 14 Dec at 7:48 am
It was in the range of end of December 2009 and early of January 2010. As far as we know, Google will update PR occasionally for every 3 months. So will be expecting new updates on March – April 2010.
# 24 Feb at 10:27 am
i was woundering how one can play the guitar when it’s in a iso, psx or hombrew video game