Over the past 2 weeks we have made 2 trips to Children’s Hospital with Audrey, in search of answers to what all our doctors are calling “the mystery of Audrey”. These trips are long and tiring, and they feel like they’re never going to end.
The first trip was to the Biochemical Disease centre to see Dr. L. We haven’t been back to see her since May and we were hoping that by now she’d have some answers. That fell under the “no such luck” category. She’d received all the lab results from a few tests done over the summer, as well as the ones from when Audrey was in the hospital and none of them gave her any more information as to what is happening in her body.
Dr. L explained that while she’s still waiting on a few more tests to come back, she can say with moderate certainty that Audrey doesn’t have one of the typical metabolic (biochemical) disorders/diseases. Before Corey and I had a chance to celebrate that “good news” she went on to explain that with our permission she’d like to refer us on to another doctor in the Biochemical Group who specializes in some deeper, even more rare diseases for further review and deeper (more aggressive) testing.
She explained that they haven’t brought up these conditions before because they are so rare and because they can hold so many life long consequences. The testing for these two diseases is rather unpleasant and they don’t like doing it on children unless they absolutely have to. She feels that at this point we are at the place of absolutely having to.
Then this past Wednesday we were off to the General Clinic to see Dr. F, again. She’s been up until this point the general pediatrician following along with Audrey’s case. Since there are so many “cooks in the kitchen” where her health is concerned it’s very helpful to have one doctor in particular who’s trying to keep all the puzzle pieces in some kind of order.
Audrey was off key on Wednesday, battling a head cold and complaining of a painful ear (which shouldn’t have any infection because she’s still on antibiotics). She protested more than normal for her exam and the appointment was, to say the least a little bit more difficult than normal.
Dr. F agreed with Dr. L’s inclination to search into these more rare diseases as well as with Dr. H’s referral to the urology department. ”All of us feel like we know there is something going on in there we just can’t put our finger on it“ she said while poking my leg to make her point. We talked about some other concerning things that have been happening with our girl including headaches, bone pain and some abnormal stools. She’s concerned that the antibiotic that Audrey has been left on could be causing some inflammation to her colon and was planning on being in touch with Dr. H for review.
They’re hesitant to take Audrey off of the medication until we see urology because her little body and primarily her kidneys are getting to a place where they can not afford another infection. ”We have to protect those kidneys for the rest of her life” she said, “We just have to determine the safest way to do that.”
The drive home was awful. Audrey cried the majority of the way home, wailed actually. In pain and upset leaving me (and my Mom) with this sick horrible knot in our stomach unsure of what to do for her. She fell asleep shortly before we arrived home, I took her out of the truck, got ready to head up stairs to put her to bed when she woke up, wailed twice and then puked – everywhere.
It was horrible. We gave her some Advil, washed her face, gave her a few crackers and tucked her into bed. Then I held Bethany, the other half of my heart and a big sister so incredibly worried about her little sister.
These trips have left my heart more heavy than before we arrived.
I know that one day God will heal her or He will give us answers, but each day that we go by that’s not that day feels harder than the last.