You’d think that by now I’d be used to writing these posts. You’d think that after as many of them as I’ve posted, as many times as we’ve walked this road, that I would know how to get at it and it would be “old hat”. You’d think….
As so many of you already know last Tuesday night once again rocked this household. After a long day of school, and canning a bazillion tomato and tomato related things with my Mom, Corey and I came home and tucked our girls in to bed. After our evening snacks and short “Hey, so how are you?”‘s we headed off to bed. As is my nightly routine I took Bethany pee, kissed her goodnight as she drifted back to sleep and then turned to my Audrey.
At 9:45pm I brushed my hand over Audrey’s head, she sighed, I smiled and all was right. I headed for bed and settled in for the night. I had just barely fallen into the beginnings of sleep when Audrey’s wail came through the monitor. On my feet in seconds I was headed to the girls’ room, thinking it was another “episode” prepared to have to cuddle and hold her and then tuck her back in to sleep. When I scooped her up I was met with so much more. In less than half an hour my little girl had gone from perfectly fine to burning with fever, barely awake and in obvious pain I felt her pee in her pull-up and it was as though someone had poured water from a kettle over my hand.
There was a panicked whisper to for Corey to “GET UP AND HELP ME NOW, PLEASE!”, thermometers and a phone call to our on call Biochemical disease doctors, then we were emergency bound. Prepared with a doctors letter, jammies and a water bottle I spent the drive to Abbotsford Emergency trying to calmly talk to my fevered (102.5) baby and praying feverently for her pediatrician Dr.H to be on call.
She was and after hours in emerg, blood tests and phone calls Audrey was admitted to the hospital at 4:30am. Her bloodwork and urine dip were at the moment unremarkable (showing signs of possible infection but nothing outstanding) but Dr. H and I know her history, we know what she’s currently going through and we know what’s be investigated. Nobody wanted to take a chance that we would go home with Audrey and face this getting worse.
It was a good decision because by mid morning she was spiking 104.5 and we spent days battling her temperatures to get them down. In less than 12 hours her blood tests (which were repeated in the AM) went haywire and we were on antibiotics. It was a UTI, a massive one and she was once again a very sick little girl.
We spent a week in hospital. Again. A place I never wanted to have to be again. Doing something I never wanted to have to do again and facing fears I’ve tried so hard to squelch…again.
By Monday Audrey was perked up. We’d finally convinced her to eat, she was no longer a lump on the bed but rather my bubbly little girl, itching to go home. We were given the “OK” to leave, once blood tests were run (results were a little better, not great) but only once we’d established a “game plan”.
– Dr. H is referring us to the Urology department at Children’s hospital. These UTI’s shouldn’t still keep happening, they shouldn’t blow up as fast and as hard as they do.
– We go back on the 3rd of October to see the doc at Biochemical Disease (or Metabolics) for follow up on this and another very scary episode from a few months ago.
– We see general Peds for follow up on the 10th and will book an appointment with Dr.H after that to also follow up with her.
– Friday Sept 21 we head for Abbotsford for another renal ultrasound to make sure there is A no structural cause for these UTI’s and B no damage from its severity
– Audrey is on 10 days of major meds (after 5 full days of IV ones) at home and then on a profolactic, which means maintenance medication to help prevent another UTI for now
– Her immune system has once again been compromised and we are once more doing everything in our power to protect her (and our Bethany) from getting sick. Major illnesses right now are a very serious concern for us and we are begging any and everyone we’re in touch with to please stay away if you’re sick!
– Another letter is being drafted with more specific instruction on what to do in case of another Emergency trip. The doctors need a plan, they need to be able to help us in the best way possible and laying it out for them is the only way to go.
This past week has once again been hard. We want answers, we NEED answers and we are getting to a place of complete and utter frustration.
Thank you all so much for the prayers and Facebook support. We can’t express at all how much those little notes, the comments, the text messages mean. They are the thing that keep us fueled and truth be told sometimes they are the thing that keep me going when all I really want to do is curl up and cry.
Please, PLEASE keep praying. Please pray that:
– We get answers. That the ultimate source of ALL of Audrey’s health concerns/issues is discovered and a treatment/cure is put into place.
– For ultimate healing. We know our God is bigger than all of this and He can heal her body.
– For Bethany. She is emotionally struggling right now. Some personal issues paired with starting Kindergarten (and not having Mommy around for the first week) and the fear of what’s happening to her sister has left my big sweet girl a ball of deep, intense emotion and fear that we are struggling to help her deal with. Please pray we can help her cope, encourage her and do this right.
Each day we get up choosing to be thankful, for the girls who are next to us, for the good things we have learned, for doctors and nurses who truly love our girls and for the moments each day where joy can be found.