I am not one to ask for thoughts and prayers. I don’t like to draw attention to myself that way so at first I wasn’t going to share the latest obstacle. But up to this point, I have gotten good at being an open book with our journey so why not continue by asking Team Courtney for those thoughts and prayers,
As I have shared, Courtney has been in a real rough patch for over 2 months now. The cause being reoccurring UTI’s or at least we think. I won’t go into the details of how many urine tests she had with mixed results which is why we aren’t even for sure if she has had true urine infections. I’ve been asked several times by doctors throughout this whole ordeal if she is telling us it burns when peeing. No, she is non-verbal, I am purely basing it on her non-verbal behaviors. And let me tell you, her non-verbal behaviors have been frequent and very telling. She is in pain!
The one thing I noticed each time there was an increase in behaviors is it happened a couple of days after she had issues with constipation, which is a chronic problem for her. Those who struggle with constipation are more prone to UTI’s. So we went back to the GI doctor. Sure enough, X-Rays showed she is backed up. I’ll spare you any other details regarding that! But something else was found on the X-Rays. They found a lesion on Courtney’s left leg. It was the nurse from the GI doctor who called and all she told us was she was going to send the scans to her primary doctor who can decided if we need to see an orthopedic.
I hung up the phone and immediately googled lesion on leg. I needed to know exactly what they meant about that. As Doctor Google does a good job doing, the internet freaked me out. Fortunately my family has a connection to a pediatric orthopedic. I quickly took advantage of that connection. She calmed my nerves but did say a full orthopedic work up was needed.
So Tuesday we have a pretty big appointment. Courtney and I will be headed to Lurie Children’s Hospital for an appointment with a urologist and will also be doing some additional scans and lab work to diagnose the lesion. So Team Courtney…send those thoughts and prayers.
Of course I’m scared but thankful for our connection who has fielded a few freakout messages. Her responses are keeping me from thinking only the worse. It is also helpful to already know she will be in GREAT hands. I am also hopeful that maybe we are approaching the answer to all her discomfort. Tonight I saw a glimpse of things starting to improve. I’m pretty sure recovery won’t be quick though. This poor little girl has been traumatized by so much pain with no way functional way to communicate it. Even during the days where we knew there wasn’t an active infection, you can see the panic in her eyes any time she needed to pee. But as her mom, it is my job to fight for her and I am ready to fight her fight until we see her happy giggle more consistantly again.
Keep on fighting
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