‘Oh what a night….
….late December back in ’63”
No not really, have I lost my mind? Quite possibly
Aria and I had a terrible night. She has been having bad nights for about a week and last night was no different. Except there wasn’t two of us to tag team during the night, just me, waking every hour to her yelling and wanting to get up.
It is really hard. I don’t sense she is in pain but she can’t sleep and is coughing and vomiting. And just restless and unsettled. Because she can’t sleep she wants to get up and watch telly and go for a walk. Every hour I get up and bribe, threaten, coax and soothe in a vain attempt to buy another hours sleep. Honestly, it is a true test of patience to keep your cool with a grumpy demanding three year old in the middle of the night.
Finally at 6am I turned on the telly and hoped she would watch it and I could get more sleep. Forget it, ten mins of watching telly and she is yelling for a walk.
I feel desperately bad for her because the real Aria sleeps soundly thru the night and it generally a happy girl. This current version is a mystery to me. We are torn by being tired and frustrated with her behaviour and really sad about how she is being robbed of a happy carefree life.
We have started ABX and she had a blood transfusion last night after her HB came back at 56.
Hamish just rang and he has spoken with the Docs. Basically they are not sure what to do. There is an infection in her gut BUT there is no way to really get the ABX in there cause her gut doesn’t move. And the liver damage is likely infection because of the guts bugs flowing back into the liver. And the dropping HB is related to the infection in her gut and liver.
The only real thing that will fix this problem is a transplant.
It is really hard watching her suffer and struggle and there is nothing that really can be done except ‘hoping’ the ABX work and ‘hoping’ it is the right one.
Aria will die without a transplant, I am really understanding this more and more each day. Please God- how long? Bring your peace to us please.
Anyway- your prayers are greatly needed.
9 Responses to “‘Oh what a night….”
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# 9 Nov at 11:33 am
I kind of like the song themes, actually I relate to it well because hamish and I do it all the time! Sorry to hear your gorgeous girl is just not well. Still praying for your big YES this week!
# 9 Nov at 12:08 pm
Love and light to all of you
xxxxx
# 9 Nov at 12:10 pm
Thinking of you guys. Praying that tomorrow brings renewed hope and that you have a funding decision (that is YES) soon.
Ali xoxo
# 9 Nov at 12:18 pm
Praying hard for you! xxxx
# 9 Nov at 1:05 pm
Our heartfelt thoughts are with you.
# 9 Nov at 2:53 pm
Aww hun thats horrible, hopefully you get some sleep tonight, is hamish in with her tonight?? Come on MOH! Prayers xxx
# 9 Nov at 5:24 pm
Praying for you! That the MoH will stamp those papers swiftly!
# 9 Nov at 7:46 pm
Praying hard for you guys….it must be so tough. Love you all heaps xo
# 10 Nov at 3:14 am
I’m praying for all of you! I’m praying that you keep your sanity, that Aria will get better, & that you will finally get the good news to go to Omaha!