Sunday, September 16, 2012

Have pee, will travel!

The kit arrived for Sara's 24 hour urine test. I decided that last Sunday was the big collection day, so to speak. She had to pee in a little tub for 24 hours (except overnight) and then I had to dump it into this orange container that looked like a small gas can. We had a conversation that she couldn't go potty by herself all day and she couldn't have any accidents or we would have to do the test all over!

To add to the situation, we decided Sunday was a work day at my mom's new house down here. So Sunday morning after breakfast, we packed a lunch and gathered up our pee kit and headed to Grandma's house! After working and having lunch over there, we packed everything back up and came back home for naps. When they woke up, I packed dinner and the pee kit again to do some more work over there. Driving around with a big container of pee didn't sound too appealing to me. Opening a container of pee and adding more urine to it throughout the day sounded even less appealing. But actually it wasn't too bad.

I can't believe at the end of it all, I only had to shake the container and then transfer enough to fit in a little vial. The vial got shipped FedEx Express to the lab and the rest was disposed of. Apparently that's all they need to determine what her kidney stones are made of.

In other updates, the doctor determined that while Adam's right kidney drained much slower than the left in the Mag 3 scan, he does not have a blockage because when the Lasix was pushed the right kidney did finally completely drain. He sees the urologist the first week of October to determine next steps to diagnosing what is causing his dilitation.

As for Sara, she got another bladder infection (her 3rd in less than a year) last week. She woke with a fever on Tuesday morning. My immediate thought was wondering if it was another UTI. I kept fighting to dismiss the thought because she is on the maintenance antibiotics every day to prevent a UTI. She seemed fine other than the fever - she ate normally, acted fine, wasn't mopy or complaining, etc. This is making my radar kick in even more because that is exactly how she was for the previous 2 UTIs. I headed to work and tried to shake my uneasiness but just couldn't. I wasn't sure if I should call the pediatrician or the urologist or the nephrologist. I wanted to take her for a quick urine dip test and not pay for a doctor visit in case it was nothing. It's really hard right now because there really isn't one doctor that is always my go-to person. Shannon and I are essentially the primary doctor and the kids' expert advocate.

I ended up calling the nephrologist and the nurse suggested just taking both kids to the hospital because they needed urine and blood work done anyway. She thought she would get results back the next morning. I left work early and picked them up at the end of naptime and headed to OSF. Being 3 is a really good age to deal with some of this stuff - they were so excited to get a hospital bracelet and had no worries about being poked with a needle! Sara didn't even wince when the needle went in! Adam whined a little but still did really great. They both got to pick a stuffed animal and we were on our way.

Wednesday morning I waited until 10am before making a phone call to inquire about Sara's lab results. I finally got a return call just before lunch. The nurse felt the results were inconclusive. It showed some bacteria but that could have occurred from peeing in the cup. She asked me how Sara was feeling and I said the same - fever, eating fine, behaving fine, no pain during urination. The nurse commented that was good but to me, it wasn't. That was still exactly how she acted the previous 2 times she had UTIs. Somehow I am not getting my point across. The nurse still wanted to wait until at least the preliminary culture came back and she thought she would have it by the end of the day. Reluctantly, I agreed and let her off the phone.

She called back at the end of the day to tell me the preliminary results were not in but for sure in the morning. Another morning. 2 days now since Sara's fever started. I'm feeling quite confident that she does have another UTI and it feels like a constant ticking in my head as time is passing. What I hear in the back of my mind is the nephrologist telling me we need to do everything we can to prevent another infection because each one is more and more damaging to Sara's kidneys. But I comply and wait.

11:00 Thursday morning and I still haven't heard from the nephrologist. I call and tell the receptionist I am not interested in leaving a message, that I want to speak to someone. They were just pulling up the results and would call me back. 30 minutes later, they called to confirm she did have another infection. Really? Thanks for letting me know! They want her to stop her maintenance antibiotics and do an 8 day high dose. We headed to WalMart after naptime to learn that the $625 prescription was not in stock. 7 phone calls to other local pharmacies left us with no option but to wait another 16 hours for it to be overnighted.

I spoke with the nurse again on Friday to let her know I did not want to resume the maintenance antibiotic Sara was on like she was suggesting. "Why not?" she asked, perplexed. "Because she has been on that for a month and a half and she got an infection anyway." The nurse didn't realize she had been on it that long. Her other blood tests came back showing that her kidney function is not good, but it was better than he was expecting. Do I feel good about that? She indicated he would want another full blood work in 3 months. I expressed that we were not interested in waiting 3 months for a follow up about how to prevent another infection, determining a course of action, and learning about the further damage this infection caused. The results of Sara's 24 hour urine test should come back early next week and we will touch base once those are in to determine next steps.

Meanwhile, I called the urologist to catch them up on the week. Someone needs to figure out what Sara's maintenance antibiotics will be when this 8 day course is done.

Words to describe the past week? Frustrating. Stressful. Emotional. Unacceptable.

These days are almost harder than when the kids were in the NICU because so much more of the weight is on me to keep people informed and push for things to happen.


Jenny said...

Sorry for your stressful week. It can be so frustrating at times! Good luck:)

Heather said...

That is so frustrating!!! It is so hard to have to juggle and work with medical issues like this, and it's so much pressure. I hope that you get a good plan in place soon.