I figured on the almost year anniversary (June 5) of finding out about Joelle's kidney issues it was time to do a post summing it all up. Last year she was running a low grade fever, her urine smelled really bad and she was having some discharge. She was 5 months old. I took her in to the doctor and she thought we should test her for a UTI. Obviously an infant can't pee in a cup so they had to cath her. Not the funnest thing a parent has ever had to do. The initial dipstick check they do in the office was positive for a UTI. The doc put her on meds and we discussed doing further testing to find out what the issue was. She would need an ultrasound, non-invasive, and a VCUG, invasive. Dr. Lund said we could talk about it again after her 24 hour results came back. I went home and researched it a little bit and was very prepared to tell her I wasn't doing any further testing if her urine came back positive for e.coli (the most common type of UTI's). It was negative. Further testing was set up and we got in pretty quickly to DeVos. She did great for the ultrasound which measures kidney size and checks for damage. For a VCUG an infant is wrapped up and strapped to a board, exactly like an Indian baby, and a catheter is inserted. She did great and didn't cry for all of that. Dye is then inserted, pictures are taken and then you have to wait for them to pee. They forget to mention that the board will also be turned back and forth to get pictures of the sides. Once the tech turned the board Jojo flip.ped.out. Nothing like having a falling sensation (every infants worse nightmare) and not falling. For multiple minutes. You could see right away on the fluoro machine that she had reflux. The tech couldn't tell me how bad it was but said it was definitely there. Thankfully it's only on the left side. We made an appointment with a urologist and had to wait until the end of July to get in. She was to remain on Bactrim until she saw him. Bactrim gave her horrendous diarrhea. Like 10x daily diarrhea. We had to do some dosage adjustments but finally got it under control. Our pediatrician warned us that Dr. Steinhart was the best but his bedside manner was to be desired. Eric came with me to the first appointment and besides waiting for over an hour to see the man we LOVED him. I had never had a man encourage me to breast feed until that day. He hated the thought of prophylactic meds but thought it was necessary since she was so young. He said we could re-evaluate that at her next visit. He informed us that she had grade 3, out of 5, reflux (actual name Vesicoureteral Reflux). It is actually a "birth defect" that you can outgrow. I hate the term birth defect. I feel like its my fault. I know it's not..but it's how those words make me feel. He said most surgeons would be on the fence about doing surgery but he had a 95% success rate for NOT doing surgery with her grade. We decided to do the prophylactic's and check back in 5 months. He recommended she be on probiotics as well. If she got a fever, for any reason, above 101.7 we had to get her seen within 24 hours. She has had some fevers and cath's since then but hasn't had any UTI's. At her visit when she was 11months he did an ultrasound on her in the office and discovered that her kidney's were the same size (5mm). That was indicative of some kidney damage. Not the news we wanted to hear but again, at least she has one good kidney. He said since she hadn't had a UTI we could get her off the meds. THANKFULLY. We scheduled another appointment in April for a higher tech Ultrasound at DeVos and an appointment with him. Her right kidney measured at 6.2 and 6.4 and her left measured at 6.4 and 6.9. It's really hard to get an accurate read on a baby because they are constantly moving so they take a couple. Her left is actually a little bigger, which is what it's supposed to be and that was GREAT news. It measured bigger and that means NO kidney damage. Every time we go to the urologist we have to have a kidney ultrasound to chart her growth but things are looking up. We still have to be hyper aware of her fevers and take her in for a cath anytime she gets one. It's not very nice because doctors don't like to cath for no reason but I have to advocate for my baby. Advocate for her to be cathed. This will be our norm until we can get her potty trained and able to pee in a cup. She will have to see her urologist until the kidney issues are resolved but hopefully we can have her potty trained sooner rather than later. I'm hoping by two..you heard it here first.
Pretty baby trying to chew her bracelet off after her ultrasound.
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