So my youngest, my 17 month old baby girl has Hydronephrosis, which I'm told by her Nephrologist means "water around the kidney" She has had this since,, before birth. We found out during a ultrasound, which showed that her kidney's were larger than normal. Not knowing what the problem was, my OB was trying to prepare me for the worst- kidney failure after birth, and thus loosing her. Thankfully, thank God, that wasn't quiet the case.
We are a military family, AF, and are stationed in Texas. So since she was born, we've been shuffling back and forth between home and Oklahoma City. During our first visit we were told that she was a grade 2 or 3 because it was possible that she could outgrow it. So we put her on medication for the most part of her 1st year of life, we finally weighed the long term risks of the medication and her condition and decided to take her off. So we waited, and at the first sign of a fever we stood by, hoping that it would go down but waiting for it to get to the point of 101.5, so that we could take her in to get a catheter so they could find out if she had a infection. So far.. no infections, but lots of catheters. She was born a day late but at premie size and so our military clinic had to have on stock the smallest catheters available for a while, so that was interesting.
We just had her 4th visit to the Dr this month, I stood hoping and praying that she had outgrown it, but as soon as the first picture was taken of her kidney's the tech. could tell me that she still had it. My husband and I had already discussed surgery options and fortunatly a new surgery option is available for her, since she is now a grade 3. So this December she'll be going in for her first and hopefully last surgery, the prodecure is called Deflux. They will go into her bladder and inject her with something that will enlarge her uritures so that hopefully they will extend far enough into her bladder and preven the backflow. She'll recover and go home that night, and hopefully, never have to go back again aside from the follow ups.
I hate that she even has to go through this, but in the long run, it's what's best. She would have to continue with the catheters her whole life, and medication to ward off infections. Should she get married and get pregnant and God forbid, get an infection, it could mean bad news for her and the baby. Not to mention that over the years, this fluid around her kidney's will create scar tissue and will eventually damage her kidney's and lead to kidney failure. Yes, there is a chance that she could still grow out of it, and that's fine. However, we don't want her to go through life always worried at the sign of fever if something's wrong with her kidney's, we want her - like all parents. to have a "normal" life.
It's been interesting and sometimes difficult to raise a child with a kidney disorder, but things are going to keep getting harder as we loose track of her fluid in take and her fluid out put as she grows older and starts school or goes to daycare. We have to monitor how much fluid and of what kind she gets during the day, she is pretty much on a restricted fluid diet. She mainly gets water and milk, drinks high in sugar are rare for her and actually when given the option between two cups- one with kool-aid or juice, and one with water... she'll choose the water -- not a bad thing to have! But our oldest gets a variety of things to choose from, be it different flavors of juice (always watered down), milk, water, or maybe even Sprite.. it's hard to stand by and watch Bella look enviously at her sister's cup. We try not to let Bella see what we give Katie to drink, but now that she's everywhere and into everything.. it's getting harder.
The hardest part about it all... is explaining it to friends and family (who for the most part all understand) and oddly enough.. E.R. Doctors. We had a trip to the e.r. due to a fall and thus mild head trauma and the Doctors looked at us like we had horns on our heads or something. She layed in the E.R. for hours without any fluid because she kept puking it back up, but for some reason even when told about her condition, they wouldn't give her any IV's. We ended up coming back the next day because that's when she started to throw up.. and when they admited her and the kidney Doctor came up to rule out her kidney's for anything,, he seemed shocked that she had gone that long with out fluids.. yeah that was a nightmare! Then we recently went to a kids birthday party and they had all the kids cups filled with Sprite, and I was one of those parents! I had to dump out Bella's cup and go fill it up with water, I saw a few parents giving me wierd looks, and I felt bad about having to dump the soda out, but I felt worse about feeling bad about that. Why does it seem that this world is all about "Be Healthy! Eat. Drink Healthy!" but when we as parents try to do that for our kids, we get wierd looks from other parents and the "why don't they just give it to her" whispers?
I wouldn't know what it's like to have a perfectly healthy baby. My oldest, Katie, was born with a birthmark on her back.. so that meant trips to the Dermotologist to measure it and keep and eye on it. Now we have to go again because it's changing, a mole has developed inside her skin in the birthmark. She also had bowel problems when she was born and had lots of gas and therefore- pooing problems, which meant trip sto the E.R. so they could help. All these visits to Doctors has left her with "medical anxiety" as her PCM calls it. -- Which by the way.. other Doctors have never heard of this! So getting my oldest to go to ANY Doctor is a feat in itself! We have to ask her Dentist to remove his white coat when he first comes in, and even then sometimes that doesn't help. She freaks out and almost goes into another world when she goes to a Doctor.. her last ear infection was very fun- the Doctor could hardly look into her ear long enough to see if it was even red, he was afraid he would scratch her inner ear so he gave up and gave us meds.
I know that I'm not alone in this world.. but sometimes we all just need a good vent session!
Did I mention as well that Katie is very stubborn and strong willed, and has one heck of a temper at times??? Yeah.. and my husband is also currently deployed for his 4th time! Ahhh what fun life brings us huh!? :)