Alexa’s surgery is only 26 days away and I am now in full panic mode researching all night, every night for alternative treatments for high grades of vesicoureteral reflux. All I can find are the typical things our Doctor has already discussed with us that he believes won’t work for her particular case. My heart is racing. I can barely swallow. My mouth is dry. I’m shaking and choking back tears. This whole situation is freaking me out! Tonight I found a fairly new method, still in the research process called Laparoscopy. Did the Doc talk to us about that one yet? I can’t remember. We have a pre-pre-op appointment in 6 days. I will ask him then. I’m running out of time! I’m sick to my stomach!
She’s sleeping right now so peacefully. We have a video monitor so I can see Alexa as I type this. I’m not sure why I still use this video monitor since she is now close to two years old and hasn’t awaken in the night for a long, long time unless she’s sick. But I guess having her real life image next to me during the night helps me feel like she’s literally by my side. I miss her at night while she sleeps in the other room and sometimes secretly wish we continued to co-sleep. Right now Alexa’s in her bed, in her room, all snuggled up next to her kitty blanket and her favorite little brown bear that we ironically received as a gift from the hospital when she was first diagnosed with this condition. At 6 months old, we spent 5 days in Boca West Hospital on IV’s as they ran brutal test after brutal test to determine the cause of her extremely severe kidney infection. The bear was with us the entire time. This little stuffed bear used to wear a T-shirt with the name of the hospital on it. The second we returned home from the hospital, I took off that bear’s Tshirt and threw it away never wanting to be reminded of that experience again. She’s snuggled with the bear ever since. He’s traveled with us to St. Maarten, Antigua, Italy, France, Monaco and Texas. Little did I know that little brown bear would spend the night with us in the hospital another 4 times before she even turns two years old for the same damn condition.
I have decided to try something completely random tomorrow… I’m going to call every Pediatric Chiropractor within 75 miles of us to see if they have ever treated a toddler with VUR and if so, were they successful. I found nothing about this in my online research, but I did find Pediatric Chiropractors are treating kids with colic, ear infections and even asthma now. If Chiropractors can cure kids with digestive and respiratory conditions, why not a urological abnormality? In my research I learned nerves near the end of the spinal cord (the sacral level of the spine) control how the urinary system works. Maybe Alexa’s sacral level of her spine is slightly off and just needs a little adjusting to fix the vesicoureteral reflux. Am I crazy? Am I stretching this a little too far in my desperate attempt to find an easier, less traumatic, less painful way to cure my little girl? Well, if you think I’m crazy, so be it. I don’t give a fuck what anyone thinks about my actions right now. This is my baby! My precious sweet innocent little girl and I am determined to thoroughly examine every conceivable option to ease her pain and avoid possible unnecessary open surgery. I can barely swallow. I’m running out of time! There’s sooo much weight inside my chest pulling me down right now. I can’t breathe. Ok… I’m turning off the computer now. No more research tonight. I’m going to try to get some sleep… with the baby monitor just a few inches away so I can feel like she next to me.
My daughter was born with 2 ureters on her right kidney and had some dilation as a result. She had surgery at 5 months old but she developed reflux after that (the bad ureter was just too bad). We tried a procedure called deflux when she was 15 months old because I didn't want to do invasive surgery again. It didn't work. So she had open surgery again at 22 months. They removed the bad ureter and reattached it to the good working one. That solved the reflux problem and the dilation. We had the best surgeon ever.
ReplyDeleteI have sat through FIVE surgeries with my kids. I'm not going to lie, it sucks. But if she has severe reflux I would want to fix it now. I wish we had actually waited until she was older to do her surgery because her ureters weren't big enough to move around at 5 months old. If we had waited until she was 2, maybe she would have only had one surgery and not 3.
My daughter is now almost 4, and her last ultrasound was good, so she's been off the medication since August. She had been on antibiotics every day since she was born. She's potty trained and healthy and totally normal. I will worry every time she gets a high fever, but I worry about all of my kids for one reason or another!
Good luck!
Thank you so much for sharing your story. This helps tremendously. I'm sorry you've had to go through 5 surgeries. I can't even imagine what you and your children must have gone through. Thanks so much for your support. How fast did your daughter recovery from the surgery at 22 months?
ReplyDeletePretty fast. Coming out of anesthesia SUCKS. There's a good half hour of screaming & crying. And then they fall asleep and wake up naturally & it's better. 2 is still young enough to bounce back quickly. I had to keep my daughter from climbing and jumping around for 2 weeks but she was more than capable of it!
ReplyDeleteMy son had his tonsils out at 6 years old & it was a week of hell. The older they are, the harder it is.
The days/weeks leading up to surgery are the worst. Anticipation is so much harder than actually going through it. Once I get to the waiting room I just let go, let the surgeons do their jobs, and wait. Honestly, the week my daughter had her UTI (after her first surgery we took her off the meds, not knowing she developed reflux. It was when she was off the amox that she got a horrible UTI), was a thousand times harder than the surgery. She didn't respond to any medication. Fevers of 105. I sat in my closet and cried & thought I was going to lose her. We had to take her to the ER to get super antibiotic shots in her legs. Compared to that week, the surgery was seriously easy. I knew what was going on, trusted the surgeons, & knew I never wanted her to go through it again. I wanted it all fixed.
If you are at all interested, you can check out my blog. Thejedimama.blogspot.com I have a million entries under kidneys. ;-)
Thanks so much. That makes me feel better to hear the surgery recovery wasn’t bad at 2 years old. (Sorry your boy had a rough time with his tonsils) We've gone through our fair share of very high fevers, hospital stays and IV antibiotics because of this VUR along with those awful VCURG tests. Good to hear the surgery is actually more bearable. Thank you so much for all your support.
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