The verdict

Well the verdict is in. More surgery for Maggie.
Her bladder pressures continue to increase about 50% each time we've come back, and Dr. DeFoor described it as a 'very angry 'bladder. Which I definitely could concur with. When she had her SP changed out it literally took me two days before I was able to access her bladder again to cath her.   Before surgery Maggie was at 220 and her urodynamics was beautiful. Then in August is went to 97, now she's at 89. So that definitely was not the trend we were looking for at all after her surgery. Even her bladder shape has changed from the nice rounded look of a healthy bladder to a more irregular shape.  There definitely was no way that they could of predicted any of that from a bladder that was doing well with just 5mg of Ditropan.  Maggie is on a whopping doses of 15mg of the XL and it hasn't really done what they were hoping it was going to do.

So Dr. DeFoor is going to lower her dose of Ditropan to 10mg since she's been overheating and flushing with the 15mg and since the 15mg isn't doing much they are just going to lower it so she isn't flushing as much. Then I just cath her once a day and let her urine out of her SP tube the rest of the time now. Not to much different than what we've been doing all along because most days I've only been able to access her bladder once or twice a day. But I won't have to worry about cathing the bladder. I can just let it out with her SP tube.  We also have to leave the Gentamicin in longer in the evening too.

Thankfully they won't have to redo anything , but they are going to have to do the bladder augmentation . This surgery requires taking a small piece of bowel and putting it on the top of the bladder ( after removing a piece of the original) and this will increase the volume. Are there risks and such? Yes. Am I worried about them? Yes. Because any time the doctors mention these possible roads you could do down , we seem to manage to go down those road. Things just as more UTI's (ugh) , very rarely cancer ( which Cincinnati has not seen this yet in any of their patients). or that ever infamous bowel leakage ( remember May??) or leakage of the bladder. Ugh.  Of course we want to think positive and say " This isn't going to happen to Maggie." BUT with that said , Maggie with throw out stuff that the doctors here haven't seen their other patients do. LOL

Even Dr. Alam poked in and said that at the time as well as her bladder was doing that they morally and ethically couldn't have done an Augment on her. But now is the time. With the pressures being as high as they are it is starting to cause some swelling in her left kidney ( the only kidney she has mind you).

Also we have to work on Maggie's weight gain. She has lost some weight and is beginning to plateau. She has gained in height but she has lost weight. Being at 37 lbs.  Its a struggle to get her to eat , drink. Period. It's been that way all her life.  But she needs to gain before this next surgery. So we were given some ideas from the nutritionist that came in to add calories. Wish us luck on that because in order gain or even get more calories. You have to actually eat the food. And Maggie is such a picky eater. she is actually a low cal food kind of gal, Everything she does like to eat is mostly low calorie. Even pizza. She peals off the cheese. Doesn't like milk or milkshakes. All I can say is ' this is going to be fun.'

So we knew we were headed towards this path. Of course we've always stayed positive and were hoping we were totally wrong and things would improve.  Am I crushed? Yes.  I don't want to go through another surgery. In the same breath its the nature of the VACTERL beast.  It just makes me sad and mad all at the same time. Knowing she has to go through this. That we have to be gone from our other three children once again and may possible end up missing our third daughter's First Communion in May.

Edited: They will be adding in Periactin to stimulate her appetite. If we have problems with it, or it doesn't help , then they will try Megace instead.