Random
So Aria’s little random temp spike and WBC spike (to 34) was actually a bug in her blood!!!  No way.  Except oddly enough her WBC dropped down to 21 this morning and she hasn’t had a temp since and has been completely fine today.  Having bacteria in your blood is fairly serious, previously Aria has been very sick when this has happened.  Even more odd is that she cultured bugs from her line and from a needle stick taken in her arm, so it spread right though her body.
We are waiting to hear what bug it is.  We know it is gram negative.  We are HOPING it is NOT puesdomonas and it is not  ABX resistant.  How could this be back?
A new surgeon this week, the infamous Dr Botha.  So the pulmonary attending came up and read the CT and offered his opinion on things.  Previously everyone was thinking it was fungus or bacteria or PTLD and all the tests have ruled that out.  The new theory is that it is ‘consolidations’ in her lungs.  Areas of lung not in use and that need to be opened up.  This is all trauma from being intubated and on the vent so long.  So Aria has a few new therapies to help open her lungs out.  Apparently this kinda of complication post transplant is quite rare although it does happen.  Hopefully in time it will improve.
We sit and wait to see if we have another 2 weeks in hospital on IV ABX, should know tomorrow. Â I hope not! Â But I guess it is likely.
Aria is doing really well. Â She is so stinkin’ smart. Â She was in her bed and I was across the room and the nurse came in to talk to me. Â The nurse said to me she wanted to change Aria’s central line dressing. Â Of course Aria heard and burst into tears. Â We have always called in a wiggle dressing and I didn’t think Aria knew what a central line dressing is given she hasn’t had one for ages. Â Poor Aria, she hates having the dressing pulled off but she calmed down after we talked.
Aria started her cough assist therapy, it is mask that covers her nose and mouth and pushes air into her lungs and sucks it out again. Â It is pretty full on and she did awesome at it. Â I can imagine how scary it must feel. Â Then we changed her wiggle dressing and again she did great. Â Then we switched her over to regular O2 and she is doing great! Â Heaps of progress made today!!!!
We are so over being here but regrouped last night after Kathleen and Anita’s comment on the post yesterday- thanks you two!!! Â Funny, you ask Aria how long she was in hospital this year for her new tummies and she will say ‘Two weeks!’ Â No concept of time. Â No point counting the days and hours. Â Rather we will focus on loving each other and God and getting thru each day.
9 Responses to “Random”
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# 8 Nov at 6:29 pm
praying for Aria as always
that time concept takes a long time to learn
one day at a time
# 8 Nov at 7:14 pm
Loving Father, when you formed man You breathed into him the breath of life. I don’t know if anyone has ever asked you this before but would You please breathe into Aria’s lungs the breath of life. Give her courage to do her cough assist therapy and fill her lungs with Your breath. Thank You so much! We trust You. You only want the best for Aria. Forgive us that sometimes we have a different definition of “best”, but deep down we believe in Your “best”. Amen
# 8 Nov at 7:46 pm
Yes, Papa amen to Kathleen and Anita’s prayer above. Yes, amen to Aria’s prayers, her MOm’s and Dad’s prayers amen, amen, amen!!!!!!!
# 8 Nov at 8:30 pm
Your whole family has been through so much. Aria is very smart indeed! Praying that Aria will be able to go home soon, with everthing figured out! I’ll be praying that God will give the doctors some insight to help her! God Bless!
# 8 Nov at 11:51 pm
Good to read that there are a number of good events today that support Aria in her recovery. Aria is smart and she has a very smart Mummy and Daddy that are giving their all. Be proud of what you are doing. May those smart Doctors, Nurses and Therapists find all the right solutions for Miss Aria. XXXX
# 8 Nov at 11:53 pm
Ever thought of becoming a nurse? Go well
# 9 Nov at 12:05 am
Praying there are no puesdomonas and that the lung therapies help.
Great she was feeling better today, she sure is a smart cookie can’t get anything past her, pleased she coped well.
love to all
# 9 Nov at 12:42 am
What a brave, brave little girl you are, Aria-Everyone is so proud of you! Thanks for the daily blogs you guys-when we know you are tired and busy and busy and tired you still take time to write an account of your day’s events for us-so appreciated-it’s like we are all on board this train, travelling the journey with you but in a carriage behind you-your back up crew! God bless-Jeannie
# 9 Nov at 4:14 pm
i agree to being in a carriage further behind, but still travelling with you.
praying that the breathing therapies help, & the bug is not the dreaded psudonomas (sp)
aria, honey, you continue to amaze me. keep up the fantastic stuff.
hopefully it will be disney soon, and home with a happy healthy girl.