A New GI Plan

We have made a step in the right direction with Julia (I hope!!).  Its been a rough week, very little success with her meds, and hours of time put in trying to make something work.  We were really getting frustrated with all of it.  She did not go to the bathroom for several days in a row and every day we knew things were getting worse.  The frustrating part about having these issues is that every day we are not successful makes the situation worse and the cumulative effect is dangerous.  It's not something we can ignore, yet so often we feel completely powerless. 

I started calling her doctors mid week to see if there was something else we could do.  It takes a while to get anywhere. A series of leaving messages, nurses calling back to take notes, then waiting for the doctors verdict.  During this time you pretty much have to live married to your phone because missing the call means back to voicemail phone tag.  And you know the phone always rings as you run to the bathroom, unload the car, or run upstairs to get something.

Thursday night I received a call from Diane, the chemo nurse practitioner from pediatric oncology.  (She plays the role of the doctor during the weekly chemo treatments in the clinic and knows us and our situation well.)  She was very concerned with what is happening with Julia.  She agrees this is a quality of life issue and serious problem.  We are obviously not addressing the real problem yet.  She listened for a long time and really wanted to figure out the best plan.  At this point she is sending emails to 2 GI doctors, a long-term survivor oncology doctor, and Dr. McMullen- Julia's radiation oncologist.  I am very interested to see what Dr. McMullen has to say.  If anyone has seen, heard, or read about bowel damage from radiation it would be him.

Then next day GI did call back.  They are sending Julia to the gastrointestinal motility doctors.  We are awaiting their phone call early next week.  They will begin with manometry tests.  These will check the pressures and muscle strength of her lower GI tract.  I am not sure what other tests they are considering, but here is a link to the commonly used ones if you are interested.  They have called in prescription sedatives for us to give her, but at this point we are still awaiting a date for when all this will happen.  We pray that these tests lead us to the real issue and help the doctors to come up with a plan for treating her.  We realize this still may require years of healing, but we need a plan for the short term while we are waiting.

In the meantime GI has given us the go ahead to use the Dulcolax suppositories until the new team takes over.  So we can at least relax a little that we are doing something.  Though at this point they are not working as well as they did previously which concerns mean that she is getting impacted again.  Poor Julia.  I still hate that she is having to deal with this.  The older she gets the more self conscious all of it makes her.  She has had more and more comments from other kids lately.  Not malicious, just curious and it is beginning to upset her.  We are anxiously anticipating finally getting an answer, but cautious and hesitant, that we have to be prepared for whatever they find.  As much as we want this to be fixable and quick, we know that is not guaranteed or likely.

She has been handling it all like a trooper.  This past week she has taken to living in a leopard print dance costume.  She found it in the playroom and started requesting to wear it over her pajamas.  I obliged and soon she was wearing it during the day, too.  It wouldn't be my first choice, but hey if she likes it I can live with it.  Your only four once.  I do wonder how she can stand the velour fabric when it's 100 degrees everyday, but she hasn't complained.  So if you see a curly blonde leopard around town, that's JuJu...