Firestorm

One new task that we were given at that last appointment was to document every bit of food that Charlie put into her mouth.  We were also to log every time she went to the bathroom, including the details...definitely a fun job!  This would help us to truly count calories and recognize a pattern between the pooping situation and food intake.  If we did not notice a change we would need to increase the amount of laxatives we were giving her.  We were leaving shortly to head out to Idaho and her appetite had never really "returned."

While in Idaho her appetite continued to deteriorate.  She ate so little we found ourselves in the pharmacy for the first time needing to buy Pediasure to supplement and ensure that she was getting SOME calories each day.  We also decided it was time to increase her laxatives.  As many of you have heard by now our trip coincided with the wildfires in Sun Valley.  Not only did the fires burn to within yards of the house but we were there with the kids.  After a long night of evacuations and drama we found ourselves in a diner for breakfast awaiting our flight home.  Charlie SCARFED down an entire pancake.  Everyone at the table had their mouths on the floor.  It was like she couldn't eat fast enough.  And then, within moments of finishing she started hitting her stomaching and yelling "OW, OW!"  Well, we did it!  We let her overeat.  A portion that any toddler would have no problem with was incredibly painful, and for the first time she was verbalizing the pain she was feeling.  We tried to get home on a flight that day but due to the fires and smoke we had to drive....For 15+ hours!!!!! Charlie was still sick and in pain and wouldn't eat, we ran out of her medicine because we should have been home and the poor thing moaned the entire drive.  Poor baby!!!

After getting home, it was time to call the doctor.  We were not seeing the desired results from the Miralax.  She wasn't eating and we were getting nervous about her overall caloric intake and what her output "looked like."  They called back and ordered an abdominal X-ray to be performed at the next appointment.

We took her in and they performed the X-ray.  It was incredibly sad.  Charlie is beginning to dread the entrance to the hospital.  She knows what a person in a white coat means and is fighting back when we need to strap her down.  Every wiggle means more radiation.  The X-ray ended up providing loads of information, however.

They found that on twice the normal daily dose of Miralax her bowels are still completely backed up.  They needed to once again change her dosage for the following month.  She was able to gain back the weight she had lost the previous month but nothing more.  The doctor was very impressed, if I don't say so myself, with my excel spreadsheets and would be sharing them with the nutritionist who she also wanted us to meet with.  There was definitely a correlation between her caloric intake and her output.  For the first time the possible need for a feeding tube was brought up.  Charlie has gained no weight over all in over three months and if we can not get her to gain several pounds by the end of spring then we are looking at a feeding tube.  Just having to have that conversation was rather difficult.

From this point we left awaiting the call to schedule her third gastric emptying scan and the manometry testing.  I was to keep at my excel spreadsheets and work hard at making sure that the pooping situation was controlled and consistent (hard work for sure.)  September was upon us, we were back to work and to school and life was moving ahead quickly....