Argh!
At rounds today a bunch of things happened. Â Lets just say it wasn’t easy and it is hard doing this HUGE thing with a new team rather then the one you have know for years. Â But moving on the decision was made to take Aria to the OR again at 7.30am tomorrow. Â Again AGAIN!!! Â Her white cell count is up and she is fighting an infection. Â So they have changed the ABX and another wash out should do the trick (ha- we’ll see)
So this means that annoying breathing tube is still in. Â Since last Saturday Aria hasn’t been able to talk or sleep with her mouth closed. Â Can you imagine having all these people doing weird stuff to you and not being able to talk? Â Would be like being trapped in your own body. Â Yesterday she started reaching around and seeing what was going on with her body. Â She felt her tummy wound, I wonder what she thinks of it?
Because she is so awake we agree at rounds to give her some sedation to keep her asleep today. Â If she is asleep she isn’t distressed and if could make it thru one more day with the tube in then it should be able to come out tomorrow. Â Since she woke this morning she has been distressed and grabbing randomly at her lines, drains and breathing tube. Â So sedation was looking like a good and safe option.
We started meds at 10.30 and 4 hours later she still wasn’t settled or even close to being sleepy. Â I spent almost 4 hours poised over her watching her arms to make sure she didn’t grab anything and lifted her 18kg body up up up as she kept thinking she was sliding down the pillow. Â Finally now at almost 6pm looks like she might be sleepy. Â Hard work.
Also looks like her diaphragm nerves may have been damaged during one of her many OR trips. Â This is nothing major and will repair in time but means she is breathing very very heavily. Â Honestly watching her breath makes you tired, can’t imagine how hard it is for her!
So today has been very busy. Â We are so thankfully to Fran and Dan and the boys for taking Asher off our hands for the arvo and for all the love over the past two days. Â They have brought enough food for an army and the boys brought pictures and other things for Aria.
Sorry those I owe emails and phone calls too. Â Had to cancel a couple of things today cause it just wasn’t going to happen 🙂
Thanks for checking in.
19 Responses to “Argh!”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 15 Feb at 6:14 pm
HUGS Anita, hoping for a better day tomorrow for you all. Always in our thoughts xx
# 15 Feb at 6:44 pm
So many of “your Starship peeps” are keeping a beady eye on your blog and thinking of you all – the “news” swept through this place like a wildfire! Keep on holding on tightly to HIS hand.
# 15 Feb at 7:23 pm
Thoughts and prayers from me as well. I know so well about what you are going through as a nurse on the other side(so to speak). Things are never as predictable as we wish them to be and watching someone we love so well be so uncomfortable is so hard. Nothing but time and her healing will really help. Prayers for comfort, endurance, patience, grace and sleep for all of you.
Sandy
# 15 Feb at 7:38 pm
Hopefully after tomorrow things will take a better direction for Aria and and that will make it easier on you all. Praying for strength for all.
# 15 Feb at 8:41 pm
Hoping you know peace as you help Aria through this really tough time, as your love and attention flows out to both your kids. May you and Hamish know deep restful sleep safe in the knowledge that the Lord is watching over Aria. Praying for another big day for Aria and OR tomorrow. Much love. X
# 15 Feb at 9:05 pm
Thinking of you guys. And praying that all goes well for aria tomorrow. Sending you a huge hug.
# 15 Feb at 9:22 pm
Thinking and praying for you all the time. Hope you can both get some sleep after such an exhausting day. Give each other a big bear hug from us!
# 15 Feb at 9:31 pm
Praying for wee Aria and all of you. xxxxxx
# 15 Feb at 9:39 pm
U are always in my thoughts and prayers
# 15 Feb at 9:46 pm
Love and hugs
xxxxxxxxxxx
# 15 Feb at 10:04 pm
Don’t give up sweetie. We’re all praying over here for you guys.
# 15 Feb at 10:17 pm
Thinking of you – I truly feel for you and can’t even imagine how difficult it all is anyway as well as trying to communicate with a whole new team of people. Sending lots of hugs xxx
# 15 Feb at 11:05 pm
I know that feeling of frustration. My son had only one organ transplanted but the recovery was a bumpy road to be sure. I will tell you this, though – it is amazing the way children can heal. I remember one Saturday – 9 days after the transplant – things were going so badly – the setbacks were overhwlming and I cried the entire day. 3 days later he was sent home and he hasn’t been inpatient since. They are amazing. Keep hanging in there.
# 15 Feb at 11:24 pm
Wow, I can’t begin to imagine how exhausted you guys must be. It’s simply incredible that you are even able to continue with the updates you write so regularly. We have all found it such a blessing to be kept up to date with your family’s joys, trials and challenges.
Inspirational isn’t a big enough word to describe your faith and testimony.
# 15 Feb at 11:43 pm
Hey Anita and Hamish. Great to read Noelle’s words. The human spirit is unbelievable as to how much we can go through mentally, emotionally and physically watching the ones we love suffer with illness and discomfort and wonder when this will end. Then you feel guilty that you are not the sick one and what have you got to complain about. But you have every right to have your feelings as they are true and real. There are so many people with faith and belief in Aria, you and your medical team. There will be the highs again of good health it is all just a matter of time. Kia Kaha. Linda xxxx
# 15 Feb at 11:59 pm
go well tomorrow Aria – am praying hard for you hugs to your wonderful parents and little bro
# 16 Feb at 12:10 am
Oh, it is so wonderful to hear that she is doing so well! Prayers for you both, Anita and Hamish, as you go through this equally tough time in the journey.
Your keyboard is still getting played by my son Nathan!
# 16 Feb at 12:44 am
I am praying that tomorrow’s trip to the OR will sort out all Aria’s problems so that healing will follow quickly.
Yours in Christ the healer, Judy.
# 16 Feb at 11:28 am
Anita your strength and Hamish’s is amazing, you have every right to have these thoughts dont beat yourself up ever. We never miss a blog and know little Aria will come through. It must be so hard to watch. Our love is with you all. The Middleton Family xx