Medical Details

Well, for most of you reading this, the summary will be enough:  we're home, and so far things are going better than expected with the bowel issues.  My emotional state is improved (in large part due to my supportive husband), and so far no major catastrophes to speak of.

For anyone wanting the (not so pretty) details, keep reading:

Dr. Levitt expected that after surgery Tabitha would be hypermotile . . . meaning the bowels move too fast.  Usually for a few weeks patients are going too often, rather than not often enough.  For some reason, Tabitha is having the opposite problem.

We have learned that constipation is a major enemy of people with colorectal malformations.  Since the muscles don't work right, the person gets constipated.  Constipation stretches out the colon and makes it work even less effectively, thus leading to worse constipation, and on it goes.  So we're supposed to be very careful not to let Tabitha get constipated (which is part of the reason we do enemas).  BUT, in this case, Dr. Levitt said that having constipation rather than diarrhea right after this surgery, is a good sign.  Constipation is much easier to control than is its opposite.  So this could bode well for the future.

However, right now our main concern is getting her UNconstipated.  The enemas haven't been thoroughly working, though today there's been some progress.  Once that's taken care of, it could all change.  We don't know which battle we'll be fighting (hypermotility or hypomotility), or if she'll be able to regulate just by diet or will need enemas for life.  We are to continue enemas for the next couple of months while her digestive system learns how to function again after having the summer off.  Then we can stop the enemas and see if we can regulate her enough (with diet and possibly laxatives) to achieve potty training potential.  If that doesn't work out and it looks like she'll need enemas for life, they recommend getting a Malone, which is a valve through the tummy which makes it so that she can give herself the enemas without needing assistance.  But we are praying that she will be able to have bowel control and not need any of that.

In about a month, we'll get a kidney ultrasound done and sent to Dr. Alam so that he can plan the next step for her kidneys.  She'll definitely need one more surgery, but when and what exactly needs to happen are still to be determined.  It appears that (apart from a miracle) she'll always need to use a catheter.  That isn't as big of a deal as the bowel issues, so I'm not too upset about that.

Tabitha is doing really well and healing fast.  She hasn't had any pain medicine since the day after the surgery, which I find amazing.  I think I'd be on morphine and bed rest for weeks!  She's got a big long incision on her belly, but it doesn't seem to slow her down at all.  In another 10 days she'll be allowed to swim again, which I know will make her very happy.  And she's also very happy to be able to eat all the things she couldn't have with the ileostomy.  She's been through a lot, but never gives up.  She's a little trooper!