October has been, in a word, crazy! I have definitely been living up to my blog name, and then some. You've probably seen lots of posts and photos on Facebook, but I haven't had a chance to share what happened at Clara's appointment, and lots of people have been asking for updates, because let's face it, she's way more interesting than I am.
A little history...Clara has been just fine, dandy, and sassy for the past 5 years. Yes, minor illnesses here and there, but nothing out of the ordinary. In July of this year she got a UTI. I wasn't surprised, because as she's 5 she's not the best at making it to the bathroom, and she had spent the week at horse camp, so I figured she didn't go when she needed to and yada yada. She was terrible about giving a urine sample and she got pretty sick, but she eventually gave the sample and was started on antibiotics.
August comes, and she gets sick again. This time, the vomiting starts pretty quickly after her complaints of feeling sick, and again, no urine sample. This time we went to the doctor's office and sat in a room giving her 5ml of fluid every 15 minutes until she could pee. Yep, fun huh? But the doctor needs to know what kind of bug is there so they know they're prescribing the correct antibiotic. After Clara finished her round of antibiotics we tested her urine to make sure she was actually clearing the infections, and I discussed further testing with her doctor.
I had had problems with UTIs and kidney infections as a kid, and I just felt in my gut something wasn't right. The doctor agreed to an ultrasound, but didn't want to go further as more testing would be invasive and her ped didn't want her to be traumatized. I get it. I got it. I still didn't feel right, but I'm not the doctor and I didn't want to over do it just because my "gut" was saying there was more to it.
The ultrasound was pretty clear, nothing of note, and we went on our merry way. At least until September. After school one day she complained of being tired. It was a dance day and I asked if she wanted to skip dance, she said no, she was up for it. She went into dance and came back out with a fever and feeling sick. I asked if I hurt when she peed, she said yes, and my heart sank. I knew it was another UTI. It was after hours but I called the doctor's office and asked if they could look at her history and please prescribe something. Of course the answer is no, not until you bring in a urine sample, call tomorrow for an appointment. I swear they put the cold hearted doctors on call, because I can't really picture my actual doctor telling us that. But who knows? Long story short, Clara got very sick during the night. She ended up in urgent care, then the ER, and one more trip to the ER. She had a UTI as I thought but she just couldn't keep anything down, so they had to give her fluids and the meds she needed through an IV.
Pitiful Girl
After the third UTI Mike asked me to make an appointment the nurse practitioner at the doctor's office so we could talk to her about more tests. Then after I made the appointment he said he couldn't make it (as my dad would say, who's the dumb one?) and I went alone. Before I went I called a specialist in Chicago and made an appointment with them, as well as confirming the need for more tests.
And that last sentence there is a big one. Why? Well, I'm a Christian and I have a whole hearted belief in the love of the Father. Sometimes, he lets us work our own ay through struggles, and sometimes he sends earth angels into our lives to help us along when we need it most. I've recently been blessed with spending more time with one of the ladies from my church. The more we talk, the more we find out we have in common. When I found out I have EDS, she was the first one with suggestions for food ideas, since her family steers clear of gluten, processed food, and a lot of the things I have to cut from my diet. She's even offered to shop with me and brought me "legal" food that tasted great to show me I wasn't giving up flavor for life. Then when I was frustrated with Clara's illness, she shared her contact at Comers Children's Hospital, as her daughter had also had similar if not the same issues. I know not everyone believes, but I can't live in a world where that is all coincidence, and this is my chance to publicly say thank you. To God, for walking through life by our sides and for Christina, for holding my hand when I was at a low point.
A-hem...I'll go ahead and discretely dry my eyes and continue, to less mushy parts. So we got the referral for the next test, got it done (which let me tell you, sucked), and then took all the info to Chicago last Monday. I met with the doctor and talked about Clara, and then he went out to look at the disks I brought. He was back in within 5 minutes, which I thought meant this was very good or very bad. (Spoiler, it's in the middle, so don't break those tissues out again quite yet!) Dr. Gundeti sat down and asked me if I was sure this was the first time she'd had issues with UTIs. Of course I said yes, and he said it was surprising, and she has a birth defect often found on ultrasound scans while in utero. Her ureter on one side doesn't close when the urine fills the bladder, so it can go right back up into her kidneys. Then her body, being a super body, decided to grow an extra ureter to fix the problem, which as you can see, didn't.
The good news is we know exactly what the problem is, and it's fixable. The bad news is that she is going to need surgery to repair the issue. She's scheduled to go in mid December, and she'll be in the hospital one or two nights. It's a minimally invasive procedure so very low chances of side effects. The other GREAT news is that normally kids her age with this issue have scarring on their kidneys from repeat infections, but her kidneys look great and she should have no lingering effects after the surgery.
She's not excited for the surgery, but she is excited to have a week off of school to spend with me ;) And I'll be so happy for her to be better that I'll think I'll enjoy the week too.
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