So lets just copy and paste the beginning of the last post onto here. I was so tired yesterday that no, I didn't get a chance to post how the day went.
The hospital called on the way out the door to tell me that the scanner was down so they'd have to move it to today's fun filled agenda. She had the ultrasound of her of her diaphragm done though and it was normal so that's good news. She did fantastic with her PFT but I guess she wasn't consistent enough and it cannot be used so yea, nothing learned from that.
Today we saw Dr. Young and you know, I love her and she tries but to hear her say that there's nothing that she can think of to make things better right now is so frustrating. She is frustrated and concerned with what's going on with Alana and the fact that she's been on O2 full time for a year now and it's not making sense. Is it her lungs? Her muscles? Her heart? Her metabolic system? Anyway--we go to do the HRCT which we hope is going to show us something and yep, it cannot be done b/c Alana cannot breath how they want her too so therefore it has yet again been rescheduled. AGHHHHH!
On Friday when she has her scopes done they are going to go ahead and do that as well. We spent 6 hours at 4 appointments today and left with not much. Dr. Young just called a bit ago is still frustrated and I can hear it in her voice as much as she's telling me it. No one knows what to do with Alana and that's getting old. Very, very old. Tomorrow we meet with GI and go over those issues so who knows, maybe this won't be another why-are-we-here trip :-/
I know when we get home and all the information from her HRCT, sleep study, scopes, etc. come back we may have some answers but I have learned to not get my hopes up. They are not able to give us anymore on the mitochondrial front aside from saying she needs to go on the cocktail when we return home. sigh.
Will update tomorrow if there's anything good to share and for sure when she's okay after the procedures on Friday.
7 comments:
You are all in my thoughts and prayers. Thinking of you often, stay strong xx
Hi Jess,
I really hope everything is ok there. Praying for you all as always. You are all in my thoughts. I really hope that your little princess is getting on alright,
God bless you all. Much love and hugs Rattles Xx
I miss your posts. Is everything going ok?
Hi Jess,
I am hoping and praying things there are ok. Stay strong, your little family are always in myy thoughts and prayers. All my love Rattles Xxxx
Dear Jess and Family,
I do not know if you check this site anymore, but I just wanted you to know you are still in our prayers.
Lyn, from PA
Hi alanna
My name is Jenna and I came across your site. U are a brave courageous fighter and an inspirational hero. I am having a scope done on Friday I am very scared.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com
hi jess and family,
Dropped in on your blog again hoping to hear from you. i pray that things are ok where you guys are.
i know that at some times there is so much happening that before you realise it several months have passed by - i'm the worst offender of this blog - neglect...
There are also times that you dont want to blog because its either too hard or painful etc.
i have been praying for your little family for a couple of years now and still contnueng to do that - its the one thing i know i CAN do for you guys.
i do hope and pray that your little
angel's ok and still got a smile that s so infectious you cant help but smile right back at the pictures.
i do hope you can update us soon i worry as you've never left your blog this long without a post before.
you are all in my thoughts and prayers jess. God bless you all, may he keep you , wrap his arms around you... may he grant you peace.
All my love
Rattles Xxxxxx
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