Home Free – The Audrey Update

We are home!  Audrey was discharged yesterday morning and for now we are all home together.  It feels great.  This journey may not be over yet for her and for us, but for now, this weekend, this day, this moment, life feels almost like normal.

Here’s what we know and a little of what we don’t:

– Audrey’s bladder/kidney infection has been treated with IV antibiotics for 5 days now, and she has another 5 days of oral meds.  It has shown signs that it’s on its way out and the remainder of the medicine is to kick the crap out of it on the way out, just so it knows never to return.

– The cause of that infection remains a mystery.  Some children have the insane ability to hold their urine for long periods of time, Audrey is one of them.  Pair that with potty training and it’s a recipe for disaster.

– Since we know not of its origin, she will remain on a low dose of super drug medication for the next 6 months.  When we will evaluate her progress and decide if she needs another year of it or can be done.

– Yesterday morning’s blood work was only mildly better.  Her count had gone from 69 back to 76, which was the number it was the day we were admitted.  This is two-fold.  First, we’re glad to see its rising, however, it’s not risen very much.  It was just enough for them to let us go home, but not enough to remove all concern, yet.  They wouldn’t do much over the weekend for her there, aside from take blood each day, so as long as we follow the rules (below) we could bring her home to a better, more comfortable environment.

– The cause of the anemia is still unknown, we know her iron, B12 and Folic Acid are all normal, as are liver, kidneys and bowel functions.  Sometimes, kids body’s after having had infections repeatedly for a long period of time can get anemic.  It’s like they never had a chance to recover fully before another one hit.  This could be what happened, it also could not.

– Another possibility is that she could have had the anemia first, which caused her immune system to be compromised and that lead to her body getting these infections.  We’ve noticed for the past 6 months or so that she seemed pale, but thought it mostly due to the winter months/lack of sun.  Now we know that’s may not have been the case.

– Her New Red Blood Cell count wasn’t back yesterday but they were hoping it too was up.  Since she had a slight improvement we are hoping that it was and that her bone marrow has decided to start doing its job once again.  Again, on rare occasions illness can cause a child’s bone marrow to go on strike.  We didn’t ever think this happened because White Cell and Platelets have always been good.  However, yesterday platelets were elevated, meaning maybe, just maybe her marrow was waking up.  The platelets shouldn’t be up with the infection on the way out, but sometimes the body over compensates at first.

– To help her body in whatever way we can we are supplementing her with iron and with Folic Acid.  Neither of which she was lacking but sometimes it helps to support what’s already happening.  The analogy I used yesterday for my Mom was this – it’s like having a box that is taped.  It’s holding together just fine, but you know you’re going to put some heavy stuff in it, you put another piece on there, not to keep it closed (that was already done) but to just support the effort.  We are totally down with bodily support around here!

– Because those last few points hold a lot of maybes and I don’t knows we are back at the hospital Tuesday morning to rerun a bunch of blood work.  They want to check and make sure those numbers are climbing and that other numbers are looking good.  When I asked what would happen if they weren’t the pediatrician said “We don’t expect that, so we aren’t going to worry about it”.  So I won’t worry.  At least, I won’t say I’m worrying – God has got us covered.

– We were released yesterday on strict instruction that should she get excessively tired/difficult to wake, a fever, any other sign of different illness to head directly for an emergency room.  Her little body has nothing left to fight with,  her immune system is shot as is her ability to ward off any other illness.  Should she get sick, the ramifications to her hemoglobin levels would not be good, they would be very bad.

– That being said, she is also to stay home.  No visitors, no trips out, no crowds.  We can take her outside a little for fresh air but that’s about all.  We don’t want to inadvertently introduce any other infection

How’s Audrey?

 She’s so happy to be home!  It’s taking a bit of adjusting to figure out why she doesn’t have my 100% undivided attention but she’s so happy to be here.  She’s also tired, so very pale and not quite herself.  She is eating and drinking much better (PRAISE THE LORD! If she wasn’t I wouldn’t have been able to leave with her) and aside from the odd tear takes her 4 doses of  medicine each day like a trooper.  She’s been so brave through all of this, calm most of the time and silly.  We are very proud of her!

What about Bethany?

I think Bethany would say she’s the happiest to be home.  This has been hard on her.  While Grammy and Papa rock, there comes a time when everyone, adults too just want their routine to resume.  She needed some normalcy.  She too is adjusting to not having Grammy right close and misses playing with Papa, but over all it’s starting to feel normal.  Through all of this Bethany was brave too.  She never complained about what was happening, she didn’t cry when she left the hospital and if you asked she said she was “Ok Mom”.  But her eyes were sad, and my heart hurt for her.  I know that sweet little girl and she missed us, but she’s strong.  And she stood strong and I am so proud it almost hurts, of my Bethany.

As for Corey and I, we are tired.  This has been long, this has been hard, and this has been emotional.  I am drained, I feel like most of the energy has been zapped out of me and like I could sleep for a month. 

But I feel peaceful.  I know my little girl isn’t better yet.  They made sure to stress that this is still sick, but she’s getting better!  I know that we have a bit of a road ahead of us, but God is good.   He’s been faithful, he’ll continue to be faithful and today, in this moment, we are together and that, that is what we all really needed.

Thank you all again for the comments, phone calls, prayers, emails and Facebooks.  They have meant the world to us and are so very encouraging through this all!  Please keep praying for us, we need your prayers so very much, and please when you do, give Him praise for all the GOOD that this post holds!

In return, we’d love to pray for you.  Leave a comment, send a message and let us do for you, what you’ve all done so greatly for us!

6 thoughts on “Home Free – The Audrey Update

  1. Great news Ashley! There isn't anything like coming home and I bet Audrey will feel better sleeping in her own bed and having her sister around all the time too.

    Still praying the anemia to hit the road so she can get back to 100%.

    You are all troopers!

    Enjoy your weekend together as a family! Hopefully it is nice and warm there like it is here.

  2. Your positivity and collective strength in the face of such great stress is remarkable. You should all be very proud of yourselves and each other for being able to support, love, and stand by each other in the midst of it all. I can’t even begin to understand how frightening it must be to have a sick child and no where near enough answers as to why. You have handled it with immense grace and fortitude. I’ll be sending you all continued hope and healthy healing thoughts.

  3. I've been reading your blog for a few months now (I found it through my friend's blog who is friends with one of your friends.)

    I just wanted to say that I'm so happy your beautiful daughter is home. She and the rest of your family are in my prayers.

    Take care and stay strong.

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