Lizzie’s Journey

Thursday Lizzie had an appointment with urology. I always dread them, and was expecting another appt where I would walk away with more questions than answers, feeling frustrated and sad. Much to my pleasant surprise, I walked away feeling encouraged and strong. For the first time, I feel like we sort of have this under control. Lizzie has been infection free for 6 months, and I feel like we are finally getting a handle on this thing. We still don’t know what this “thing” is, but I’m beginning to understand that we may never know, and that is finally starting to be ok for me.

So here is the progress report:

Kidneys still look good on ultrasound. There is still some swelling in the left kidney (hydronephrosis), but uro is not concerned about it at this time. Blood work looks good, she’s already on antibiotics, and the vesicostomy is keeping the kidneys safe, so for now, no worries, which is good news.

As for the antibiotics, she is still having to take them daily, despite gut and yeast issues, but we have realized this isn’t a fight we will win easily. Too be honest, since she’s been healthy for almost 6 months, I might be afraid to change anything anyway… despite how much I hate the antibiotics.

So now what? Now we wait. Assuming there are no other problems or infections, the plan is to wait 2 years and then take down the Vesicostomy. In order to take it down, we will have to make sure that the Deflux has corrected the VUR (or at least Greatly reduced it), and that the bladder is/can function properly. We will do a VCUG to determine the VUR status, and may have to repeat the Deflux surgery before reversal. We will also do another urodynamics to test the bladder, as well as blood tests, and a DMSA scan.

Once we’ve gotten through all of that, we take down the vesicostomy, cross our fingers, and jump straight into potty training. It will be a rigorous schedule of physically training the bladder, so she needs to be old enough to understand the concept, and get it quickly, which is why we are choosing to keep the vesicostomy so long. Once the vesicostomy is down, she will go from urinating through her belly, to being a “normal” little girl. I can’t imagine how strange that will be for a 3-4 year old. We are hoping to be potty masters so quickly and efficiently that we don’t have to catheterize, but we realize that when you have a ginormous (it needs it’s own word! lol) bladder that you might not feel, and you’ve never really used your hoo-ha, there might be some issues.

If all else fails, and she continues to get infections, we can always put the vesicostomy back in, so we have options. They are not our favorite options, and we feel confident that if anyone can do it, it will be Lizzie. I’ve learned that no matter what, Lizzie will be fine… better than fine. She is a fighter, and a truly amazing little girl. She has surpassed everyone’s expectations in growth and development, and she continues amaze us everyday.