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Nephrology Appt. follow up

The dreaded pediatric nephrology appointment was yesterday morning. At first, I think I was more nervous about how the day was going to unfold since Noah would be out of his normal routine, than I was about the appointment itself.

I absolutely hate waking a baby from a nap, so my husband and I put him down for a nap a half an hour earlier in the morning, in hopes that he would wake up a little earlier and be good to go. Of course that backfired. I had to wake him up from his sound asleep nap around 9:45, to quick do a diaper change and head out the door. Luckily he goes with the flow and was not phased at all.

The appointment was 25 or so minutes away and involved us parking in a parking garage, going down to street level, walking up the hill a bit and entering another building. Due to the pandemic, Noah goes nowhere and has not been in the car for more than like 10 minutes at a time. Daycare is only a couple minutes from our house, thus making for super short car rides.

When we went to the office, they immediately put us into a room. I don’t think offices utilize their waiting rooms much anymore these days. We were on the eighth floor and Noah was fascinated with looking out the window and seeing the busses and trucks and action going on below.

A nurse came in, explaining that they needed a urine sample. We were curious how they were going to collect urine from a one-year-old, but they used a bag that stuck to his skin and put a diaper over it. Noah was not happy when we lay him on the table for the nurse to do this. He was probably afraid he was getting shots or something.

The nurse came in a few minutes later with a stuffed animal lion for Noah because she felt bad for giving him crocodile tears. She was very sweet.

When the doctor came in, she explained to us that Noah has one point on his genetic mutation that is essentially mutated. For example, if a gene was made up of ABCD, Noah’s might be ABCE instead. The doctor stated that this seems to be a good thing since the entire gene is not affected, and only a part of it. She mentioned that maybe the good part of the gene will over power the bad part. There really is no way to know though but this was encouraging as parents.

We asked a couple questions and chatted for a little bit but Noah still had not wet his diaper yet. For a kid who drinks water like it is his job and pees constantly, what the heck was going on.

They mentioned that we could keep the bag on for him to pee in and we could collect it ourselves and bring it to a local lab but we decided to stick around for a few minutes and give Noah lunch.

Noah sat on my lap, in his diaper, with his blanket around him and pigged out on his lunch that we packed.

I brought a rectangular sectioned plate and my husband helped put Noah’s food on it. He had bologna, cheese, blueberries, crackers and a pouch. This kid literally shovels his food into his mouth as if it is his last meal ever.

A few minutes later, the nurse came back in and walah, a totally full bag of pee for her. There was so much pee that it got on my husband and onto the floor. Pulling the bag adhesive off was a little unpleasant for our son, but it was over before he knew it.

They were able to test the urine on sight but only the doctor could provide the results, and she was in another examining room at this point. We decided to leave and have the doctor call with the results.

The doctor called about an hour later. She was pleased to find no protein in his urine and only trace amounts of blood. Full disclosure again, I have the same microscopic blood in my urine as well.

She wants to see him in three years to re-evaluate and do another routine test.

I guess I did not need to give you all the complete play by play but I wanted to follow up on the previous blog that mentioned his Alport Syndrome.

Noah is a tough little guy and he will endure any curveballs thrown his way. Our plan is to keep educating ourselves, staying in the know, and keeping our fingers crossed for more good news along the way.

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