We had an appointment with the Urologist today...needless to say, it did not go as I would have hoped. Do you need back story? Read on...if not, skim and keep going to the latter paragraphs.
Jocelyn was diagnosed with Renal Reflux at 2 months old. Her bladder was forcing urine to go backwards up into the kidneys She got a really bad infection that actually damaged her right kidney. She was diagnosed with Non Neurogenic Neurogenic Bladder at 9 months. Her bladder looks the same as someone who might have Spina Bifida or other Neurogenic problems but she doesn't have those things. Her bladder does not empty completely which means that we have to catheterize her every 4 hours...fun, fun, fun.
Both of these conditions leave a high likelihood that she will get a urinary tract infection. And she has had several. She has had dozens of tests and procedures over her 3 years and even a surgery last year to resolve the Renal Reflux. Her reflux has been resolved, but the infections continue to come, mostly due to the cathing.
Now to todays appointment. She had her kidney ultrasound today and she did VERY well and only fussed at the beginning and then started saying "cheese" when the tech took the pictures of her belly. Once we got the urologists office she told us that her kidneys looked the same as they did last time...we sort of expected that though. I cathed her at the office and gave them the sample. They can do a dip that comes back instantly for white blood cells that show sign of infection and then they culture it to see what bacteria is growing. So they dipped and it came back positive for infection...we are now waiting on the culture and we are starting antibiotics tonight. She had been infection free since October 2010. Streak broken.
The urologist also mentioned that she wanted all of us (including to consult with a neurosurgeon about a procedure that cuts a cord in the spine that connects the spinal chord to the base of the spine. Sounds super scary but apparently it is a very common surgery performed by neurosurgeon and something done frequently in children like Jocelyn. With that being said, I am scared. I thought our days of surgery were behind us. I don't want them to remove one of her vertebrae and put it back. I am so nervous and it's not even scheduled yet and it won't be set in stone for 6 more months, but she is my baby, no one wants to see their baby go through any type of surgery. It is likely going to help her bladder dysfunction and I am open to getting her as close to "normal" as possible, but I have a LOT of research to do about this surgery before I talk to anyone!
I am ready for Jocelyn's medical journey to be over. I hope that IF she has this surgery she will be fixed and her bladder will function correctly. A lot of questions need to be answered...now how do I find the answers I need before I go back to the Dr?? Another question...
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