Audrey Update – Another One done

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Last week was a little bit of a gong show around here.  Corey was away for work all week, we were all adjusting to the whole “back to school” thing and Audrey had another appointment with her regular ped Dr. H.

Over the holidays we saw Audrey’s tummy pain really increase.  She has gone from complaining of her tummy hurting a few times a week to complaining about it hurting almost every hour.  She’s waking up more at night and now, some of those times she’s standing on the floor while doubled over her bed sobbing.  Her urine still has the funky smell issue and the other symptoms still seem to come and go.  In the midst of the complaining and not wanting to eat normally all the time (which may have something to do with this or with the fact that she’s 3) she’s still a happy, silly little girl.

Dr. H had been gone over the holidays and I was so glad to have our regular appointment scheduled for her first day back.  After sitting and talking with us and well as trying to examine Audrey (which resulted in wails and hysterics because AJ didn’t want her to touch her tummy), Dr. H decided that she needed to make some phone calls to our Biochemical disease doc (“Dr.Little Kiss”) at Children’s to get Audrey seen.

We already had an appointment scheduled this Monday with the Urology department at Children’s and after talking with “Dr. LK” she decided to come in on a day the Biochemical clinic was closed especially to see Audrey.

Both appointments were early in the morning and so we decided that we’d make a family night out of it and stay in the city Sunday night.  The traffic and new bridge being what it is, we didn’t want to get stuck with an issue going in and not make these two vital appointments.

Monday morning saw us get up to snow and the affirmation that yes, we’d made a good choice in staying there.

Our first stop was Urology and after checking her over and talking with us the doctor came to the following conclusion:

– He doesn’t believe that what’s happening to Audrey is due to a structural defect.  They have run many (MANY) different kinds of tests on her little body and to date they have found nothing that indicates that something is amiss with her plumbing.

– He does believe that her UTI/Kindey infections are NOT the cause of what’s happening to her but rather a result of something else happening in her body.  Her lowered immune system combined with whatever it is that’s wrong is allowing her to easily get sick and her body’s best way of showing it is via those infections.

– He wants us to keep her on the meds she’s on right now but is concerned with the fact that they are “the really BIG guns” and we need to consider other options.

– His final words to us were “it’s a great thing we didn’t find anything structurally wrong with her, I’m sorry I can’t just wave my magic wand and give you answers but I do believe you need to keep pushing, keep digging to find your answers”.

We had just enough time to finish up there, head upstairs for a quick potty break and snack before we headed in to Biochemical Disease.

Dr. LK examined her yet again, chatted with Bethany – who when nervous talks…a lot, and came to these conclusions:

– from what we can tell right now Audrey does not have one of the more “common” Metabolic disorders.  None of the tests to date indicate that she has any of them, but we need to keep watching for them to appear.

– A referral has now been made to the GI department at Children’s for a Gastroenterologist to take a look at her and see if it’s something happening in that part of her body.

– There is also a referral to another very, VERY specialized doctor within the Biochemical Disease clinic to see her to look at conditions that involve her Autonomic Nervous System.  It may be that the things our bodies do on “auto pilot” breathing, blood pressure regulation, fevers, heart rate, bone marrow function, blood cell production aren’t happening correctly.  It could be that her “auto pilot” isn’t working.

– Another HUGE amount of blood work was taken, urine samples submitted and x-rays done to make sure we aren’t missing anything.

It was yet another frustrating batch of appointments.

We are ever THANKFUL that we aren’t finding things that are life threatening, for a team of docs who’s as convinced as we are that there is something off kilter in her body and for everyone who has and continues to uplift us in prayer, messages, emails and phone calls.

We are also ever exhausted by the process.  The appointments, the strain it puts on each of our girls, of seeing Audrey in pain, of wondering what’s around the corner.

Everyone involved in this process is concerned about one big thing – is this Audrey’s body’s way of warning us something big is on the horizon.  Something like a volcano grumbling for years before it erupts there is concern that Audrey’s body is grumbling before what ever is causing her health to be compromised blows up into huge proportions.  It may be and it may not be, but none of us wants to take the chance that it is.

As this week has played out, from church to the radio, to a book I just started to read the other night, God has been peppering me with a message, with a particular song to remind me that this too is not in my control.

The lyrics from Chris Tomlin’s Our God hold such a clear and simple message about where God is, both in our good times and our struggles…

Our God is greater, our God is stronger, God you are higher than any other.
Our God is Healer, Awesome in Power, Our God! Our God!
Our God is greater, our God is stronger, God you are higher than any other.
Our God is Healer, Awesome in Power, Our God! Our God!

And if our God is for us, then who could ever stop us.
And if our God is with us, then what could stand against.

As these days wear on, as time feels like it’s flying by and answers seem to be dragging behind, when it feels like discouragement and fear are going to swallow me whole, I keep singing this song to myself.  Reminding me that MY God is Stronger than all of this, He’s the ultimate healer, He’s more powerful than the fear that could consume and that with Him by my side, by Audrey’s side, By Bethany and Corey’s side, nothing can EVER stand against us.

 

2 thoughts on “Audrey Update – Another One done

  1. I am so glad the team of doctors are on your side. I keep hoping that one of these trips is going to finally be the magic one that tells you what is wrong and how to fix it.

    I will keep on hoping!

    🙂

  2. Just putting on my nurses hat here and I'm curious if they've delved into the food side of things with her abdo pain? It is an interesting list of specialist that you've been able to see and they've knocked through lots of testing! What a roller coaster you must feel like you are on! Thinking of you!
    Mama in the City recently posted..Despite Being Tired We Danced

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