You wouldn’t read about it
Today I heard a word I haven’t heard in a long time in reference to Aria. The word was- DISCHARGE!
I can’t believe it and feel a bit panicked about it. Can you believe it? Aria will be able to leave the hospital and come stay at our room in the Lied (which doesn’t thrill me actually all four of us in one room!)
Aria is doing so very well. She isn’t on morphine anymore and doesn’t seem to be having any pain. Her blood pressure has come down and she hasn’t had a bleed in a long time, almost a week. A week is a long time in our world. The team feels they have been able to stop the bleeding with a medication called Ox something.
Aria’s status one runs out on Saturday midnight. And her HB is staying stable because of the lack of bleeds which means if she doesn’t get a transfusion she drops down the list. She will still be very high and may actually not drop at all depending on who else is on the list.
Overall I would have to say that this little episode over New years may have actually helped. Or rather the treatment helped, moving some of the junk that was in her belly that was giving her grief. They were and are still flushing lactulose up and junk is coming back down. I leave the details out but put it this way Aria is not a fan but she does ok with it.
So Aria has been in PICU and listed for 4 weeks on Friday. Wow. Again everyone is surprised there hasn’t been organs available and our wait is considered ‘long’ as I was told this morning. But for whatever the reason is God didn’t choose 2009 to be the year of the transplant. 2010 will be, just not sure when of course.
Honestly, 4 days ago she was on a ventilator and barely conscious and now the team is talking discharging her! You wouldn’t read about it, except you are, right here. God is good that’s is all I can say.
UPDATE
They have stopped the Ox something med. Another YAY. This means Aria is completely pump free for 4 hours a day. She has been doing well with her walking, standing independently by herself for a good half min or so. It will be much easier to get her to walk when we don’t have to manage her and a pump and pole. And another step towards discharge
19 Responses to “You wouldn’t read about it”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 7 Jan at 4:57 am
Wow that is amazing! Praise the Lord for His healing and upholding hand!
# 7 Jan at 5:25 am
yay aria, you are amazing.
# 7 Jan at 6:43 am
WOW!!!! This news is amazing! Yet, I can fully understand your excitement coupled with fear. The nice part (to me) was always knowing even though you weren’t IN the hospital….you were AT the hospital. make sense? I can remember one night (midnight), Caed began running a temp, but I had NO way to see how high. (he still had his central line….and of course ANY fever….is always very scary) I woke the other kids, and loaded Caed up in Caleb’s stroller. We went searching for anyone….on ANY floor who could help us. It was nice.
The “freedom” will be good for your family. (a little more difficult, yes.) But…I’m sure Aria will LOVE the new surroundings.
Continuing to PRAY PRAY PRAY for those organs and the family of the donor! Love you!
# 7 Jan at 7:08 am
Hi this is fantastic news. hope that arias organs appear soon x
# 7 Jan at 8:10 am
Wow – this is incredible! How awesome…. How encouraged you must be…. rejoicing with you here and praying on for the right organs for darling Aria. Enjoy the walks!
# 7 Jan at 8:12 am
WOW! This certainly is amazing! Aria we think you are a little hero. And as for your Mum and Dad, only BIG heroes have little heroes.Have fun in the room upstairs all together. Looking forward to some more family pictures soon. And waiting for your news Hamish about the driving test episode.
# 7 Jan at 8:45 am
Wonderful news. I was praying today for God’s healing touch upon Aria.
I thank God for answered prayer.
With love.
May God bless you, strengthen you, comfort you and give you His peace over everything.
Eve (England)
# 7 Jan at 8:51 am
miraculous Amazing stuff (i’ve not done church much in my life but have always believed in something great looking out for us and definately in angels) and have prayed all my life – I have seen proof of this with Cody and now Aria – it would be good if you guys had more living space though – will pray for that for you guys along with those organs.
# 7 Jan at 10:58 am
Aria is living proof that God still does miracles! 🙂
# 7 Jan at 11:26 am
Sad that Aria may possibly lose that number 1 spot but ever so thrilled to hear she is doing so very well. Love to you all and still hoping for the perfect organs to come through x
# 7 Jan at 12:28 pm
Aria what a trooper! You just keep amazing us and keeping everyone on their toes! Love you all and miss you xxx
# 7 Jan at 3:27 pm
What fantastic news! Well done little princess for an amazing recovery – who would have thought you would keep giving us such miracles!
# 7 Jan at 3:45 pm
What a wonderful courageous little girl, go to it Aria. Kia Kaha, Kia Kaha to the family
Praying for you all.
Ann
# 7 Jan at 4:13 pm
Fantastic News! Praise the Lord
tony
# 7 Jan at 5:56 pm
What encouraging news,truly a miracle. Enjoy your little angel while she is well and when those organs arrive,you will be refreshed. Praying for you all still.
Judy.
# 7 Jan at 6:50 pm
Fabulous news. Well done Aria, you continue to awe me with your strength x
# 7 Jan at 9:30 pm
God is good! I hope you enjoy your freedom for a while.
# 7 Jan at 9:34 pm
yaye that is wonderful news
# 8 Jan at 9:35 am
WOW!!!!!!!! how cool – some quality family time!