Frustrated

After my last post I realized I haven't been keeping this blog updated about how the bowel management program has been going for Tabitha.  So for those who want to know the details of our lives, and for the other IA moms reading this for medical reasons, I wanted to post an update.  (It's not a real pleasant one, so don't feel obligated to read it!)

When I wrote from Cincinnati everything was going well, and I thought "We're going home, no more diapers, I'll get used to this enema thing, and all will be well!  Yay!"  And it was. . . . for a couple weeks.  But then she started to have accidents.  For the past 3 weeks we've been having problems, and Tabitha's been back in diapers.  We've been emailing back and forth with the nurse at the colorectal center, getting x-rays to check for constipation, adjusting the enema dosage, and becoming very frustrated!  (Well, that last part is just me.....Tabitha and Heath are fine.  But I am anything BUT!)

We're going to try another adjustment tomorrow, and we're supposed to feed her lots of yogurt/pro-biotics, and hopefully get this under control.  It's just so frustrating because I thought our Cincinnati trip was the answer and we weren't going to have to deal with this anymore.  But, it seems like ever since deciding to adopt Tabitha, I keep learning more as we go along, and most of what I learn just makes it worse.  Ignorance sure was bliss.  I have to admit, it's definitely better than it was before bowel management.  She no longer has constant leakage and the foul smell that followed her everywhere.  Now it's just occasional accidents.  But since we don't know when those accidents will happen, she has to wear diapers, and we always have to be prepared.

If she does get to have surgery next month, that will be great, but it will also mean re-doing all this enema stuff to find what works for her new anatomy.  I feel like her medical needs are overshadowing everything else in our lives right now.  I spend hours online chatting and researching all her various ailments, in addition to the daily enemas, cathing, doctors appointments, and other things that cause me stress.  Today started with her x-ray, then her speech therapy, and then spending the entire afternoon at Johns Hopkins (2 hours of driving, 1.5 hours in the waiting room, 1 hour in the doctors office).  Fortunately Heath was home today because of the rain and SNOW (yes, snow, but that's for another gripe session), so he helped out with a lot of the day's stuff.  But all that, plus the fact that she might end up with a temporary colostomy after the surgery is just not making me feel real positive right now.  I could definitely use some help with my attitude.  Overall it's been a good week, but today I'm just really discouraged about it all.

Sorry to write such a negative post, but I want to keep my blog "real", and that's how I'm feeling today.  Hopefully a good night's sleep will help.

On the positive side, Tabitha is pretty oblivious to all this.  She's not bothered by the diapers, handles the enemas and catheters fine, and thinks going to the doctor is a fun "bye bye" trip.  So if Mama could just stop pouting and have a good attitude like my daughter, we'd be doing pretty well!