Urologist consult for Adam

I was expecting to go into the Urologist appointment with Adam yesterday and tell the doctor we weren't interested in any further tests at this time. The Nephrologist had indicated Adam's labs showed kidney function was fine, there were no abnormalities in his kidneys, and he doesn't have a track record of UTI's. Shannon and I were comfortable and prepared to fight for the "let's wait it out" approach because the dilitation in Adam's right kidney doesn't seem to us like it was causing a problem.

Well, so much for expectations!

The first thing out of the doctor's mouth was You probably aren't going to like what I am going to say but Adam needs a VCUG. And I responded "No, I don't like that."

That is the procedure Sara had a few months ago which requires putting in a catheter and filling the bladder with fluid and taking x-rays to see if fluid is flowing backwards from the bladder and into the kidney (reflux).

He said there is a partial blockage in the area where Adam's right kidney drains. "What? The Nephrologist ruled that out." Well, there is a partial blockage. I'm just not sure if that is the cause of the dilitation. Normally I would be willing to wait and see but I am highly concerned about the function of the right kidney. "Have you seen Adam's recent bloodwork from OSF a few weeks ago? I was told it indicated his kidney function is normal." No, I haven't seen the results but I am not convinced the function is normal. If the left kidney is fine and the right is not, the labwork will reveal it is normal and that is skewed. I am very concerned because whatever is causing the dilitation has caused the "meat" of his right kidney to become extremely thin. "This is the first I am hearing of this. The Nephrologist said his kidneys were fine."

Yep, how many contradictions did you count in that conversation? This is the joy of having 2 doctors to coordinate with and not being able to get all of us in the same room. Frustrating is an understatement. The Urologist actually pulled up Adam's ultrasound from mid August and showed me what he was talking about with the thinning. From what he pointed out, the meat of the right kidney is about 1/3 of the thickness of the left. He also showed me a line graph of Adam's Mag 3 scan. The left kidney had a red line and the right was blue. You could see the two lines running parallel with each other straight across the screen as the fluid was entering Adam's body and being processed. But when the Lasix was pushed to flush the kidneys, the red line dropped down to show it flushed but the blue line started to climb drastically uphill, uphill, uphill, until it dove downward. The doctor said that either means the right kidney finally drained on its own or the left kidney drained into the bladder and then the fluid came back up into the right kidney before it finally drained. He wants to completely rule out reflux before moving forward with any kind of surgery. If Adam does have serious reflux, he will assume that is what is causing the dilitation and the thinning. At that point we have another crossroads of deciding to wait and see if his body corrects that or move forward with surgery. If reflux is not present or is minimal, he will shift the focus to the partial blockage and consider that the problem, which also requires surgery.

I agreed to the VCUG.

Then we had to have a lengthy discussion because he didn't order sedation and that is what I wanted. He said he never orders them with sedation because it can alter the results since the urinary function isn't the same under sedation. Another conflict of information. I know someone who actually does the sedation and they perform it that way for him all the time and the radiologist performing the test says it does not affect the results. I told him everyone I talked to recommends that. Well, I don't know who you are talking to. The people in the room administering the test! Well, of course they would want sedation to make the child easier to deal with. I just want what is best for Adam and to me, that is sedation. Honestly, I felt strong-armed when talking to him. He said it was my decision but he wouldn't do it that way. We left it that I would talk it over with Shannon and make a decision.

We talked to some men who have had catheters. I talked to my friend who does sedation. We talked about our comfort level. We are doing the sedation.

The Urologist and Nephrologist have their monthly joint meeting on Monday to discuss patients they both see. I spoke with the nurse this afternoon and she will be at that meeting and will bring my list of concerns regarding the conflicting information. Sure wish I could be at that meeting!

I am wired to seek out consistent data and not rest until I get it. I am wired to ask questions until I understand.

I am also wired to be a mom, which means I will fight for my kids until my last breath. Another example of an instance where I am their best advocate!

Let's end on a lighter note, shall we, now that I am all fired up!

This was the totally cool exam table at the doctor's office. Honestly, the best part about the visit! It kept Adam busy for 20-30 minutes! I think it would make a great idea for a toddler bed if we turned it into a fire truck and made a ladder on top for a bed rail!

Random oddness

Having 3 year old twins certainly keeps life interesting! You never know what you are going to run into. Like the night I came home from work and rounded the corner to walk down the hallway and came across this. It's a stuffed animal bear crammed in a doll's stroller with blue sunglasses on.

Or maybe the night I was walking by the dining room and saw this out of the corner of my eye.

Sara has really been into putting "pretties" on everything. I wish I would have gotten a photo of her work on Ariel the mermaid. Or should I say Adam's work? The front of Ariel was facing Sara with 2 pretties nicely placed in her hair. The back of Ariel was facing me with 7 pretties randomly located in a rat's nest fashion. I made the comment about Adam's handiwork and Sara jumped all over that - "No, I put those pretties in!" I spun Ariel around to show her the back and you should have seen the look of shock and horror on her face as she said "I didn't do THAT!"


And then there's Sara's latest infatuation. We attended a picnic over the weekend and both the kids latched onto some free toys that were being given away. For Adam, 3 cars. Sara? A dinosaur. A brontosaurus to be exact. Which she has warmly named "Diney." The past few days we have found Diney is strange places. Strategically lined up over a doll's miniature travel potty. Can you find him in this photo of the kids' wardrobe closet?

How about a closer view?

Apparently he had a snack at the table with the kids tonight but I didn't notice until after I had put them to bed and was cleaning up.

God only knows what I will find next!

Out of the mouths...

I was brushing my teeth this morning. The bathroom door flew open, surprising me a little. Adam had on his pajama shirt, orange monster truck underwear, and one black sock pulled all the way up to his knee..."Mom it's not ba-noc-u-leers, it's bee-noc-u-leers." He slammed the door back shut and left as quickly as he came.

I stood there for a moment as my mind was trying to register whether that just happened.

RIP flip flops

Adam is truly the master of flip flops. He can wear them better than I can. He can wear MINE better than I can...in a full out sprint across the yard! You have to have some serious toe strength to do that, especially in a pair that is 2 times your size. I have been watching his flip flops slowly get more and more worn throughout the summer. He must really grip with his left toe because it was really getting thin and I wasn't sure they would last much longer. I came home from work the other day and he had finally worn a hole thru them. Granted, they were Old Navy 2 for $5 quality but they look nothing like the other half of the purchase that day which his dainty twin sister wears!

I think next year I will invest a little more money in flip flop purchases.

Just because presents

 Today was such a fun day!
 

I had bought Adam a bike at the most recent Peoria Mothers of Twins Sale and we hid it in the basement. My intent was to wait until their birthday in April and buy one for Sara, too, to be birthday presents. Then my cousin reminded me that there may not be bikes for sale yet at that time of year and we should consider buying end of season and saving it. That's exactly what we did...kind of!

Once Sara's bike was hiding in the basement, too, I told Shannon I couldn't believe we would have to wait 6 months to give them to them! I'm terrible at waiting for fun presents. Shannon surprised me and said "Then let's not wait! Let's give it to them as a just because gift!" Sounded good to me. Then it was a matter of picking the day when we could all be together as a family.

This morning was the day. We got them lined up outside to surprise them.

 They came out and I heard a "Woo hoo" and a "We got new bikes!" But honestly, I thought they would express a little more excitement.

 They went right over to check them out.

 

Adam's is looking pretty proud of his new big boy bike!

 

Little Miss Sara with her hand on her hip - what a pose!

 

Sara hopped right on and off she went down the driveway with no hesitation! I could hear Adam telling Shannon behind us that he didn't like it wobbling. Sara rode down to the end of the cul de sac and back while Adam was just making it out of the driveway!

The more they road the more they got the hang of it. We spent well over an hour riding this morning. It was nice that I could walk at a decent pace and they weren't constantly running into me!

Happy just because present, kids - we love you!

Out of the mouths...

Picking shirts this morning...

Me: "Sara, do you want a flower shirt?"
Sara: "No."
Me: "Do you want Will trade brother for a cupcake?"
Sara: "Yes."

Adam: "I wouldn't trade Sara for a cupcake. I would just eat it all gone!"

That pretty much sums it up for Adam. Not only would he not trade or give up his sweets, he devours them and asks for more!

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.