Rough week

I'd call this one of the rougher weeks we've had with Joseph in a while.  First of all, last week, we brought Joseph to the GI specialist and learned that first, he should have been seen sooner but his pediatrician didn't think he needed the appointment in the first place and second, he is suffering multiple complications that include: worsening reflux, intestinal dilation, nerve damage to his intestines that is causing motility issues, and an overgrowth of bacteria in his intestines that are fermenting everything he eats - you can smell it on his breath, it is very weird. His breath smells very fruity and acidic. First step was to stop any solid foods we were starting to introduce and feed him strictly breast milk (more presser on me because my milk supply has been so low since returning to work). Next step was to put Joseph on a strong antibiotic to try and control the infection in is intestines. Third step was to increase his reflux medication. Fourth was to get an upper GI and small bowel follow through test at the hospital. That was scheduled for Monday of this week.

Monday's test was pure torture. Joseph had to drink this nasty contrast and he wanted absolutely nothing to do with it. I had to fight with him for about an hour and force him to drink it. The contrast was chalky and white and smelt like berries. I felt so mean forcing my child to drink something like I was. He was fighting hard too. We both ended up covered in it. I managed to get enough into him for the test, but then I had to help hold him down under the xray machine and turn him and push on his belly. It was horrible. He slept for pretty much the whole day after we got home.

His visiting nurse came by later that day and told me that the contrast could be very difficult to pass, even for a normal baby, so I had to monitor Joseph closely. He didn't poop at all Monday, but passed some of the contrast on Tuesday.

Wednesday was his 6 month check-up with his pediatrician. His growth is catching up nicely! He's 16lbs! He pooped out some more contrast at that visit and got 3 shots. His pediatrician was surprised that he still had contrast in him from Monday. He pooped a few more times that day and by evening, everything started to go downhill for him. He spiked a fever of 102.4 and the contrast was forming rock-hard pellets that he was really struggling to poop out. He was getting very uncomfortable. I called his pediatrician who advised Tylenol and a suppository. I braced myself for a long night.

This morning, the suppository came out while I was checking his temperature (it was down to 100.2). The suppository was coated in contrast and never melted so that didn't work. He was in a lot of pain this morning and his reflux was so bad he kept throwing up and choking. He has been fighting taking his medicine more and more each day this week and this morning, it was a battle! I came awfully close to staying home with him but my boss has already threatened to fire me for missing work because of him. I called the GI specialist and was advised to try Milk of Magnesia and see if that might help him pass the contrast. Oh great, another medication! Here's what his twice-daily regime currently looks like:



Evening medications went a little more smoothly, he resisted less, but still he gaged and coughed and pushed the syringes away. There's a part of me that wonders what long-term effects all the mediations he has had in his lifetime will render. He is already scheduled for a follow-up hearing test next month because of all the antibiotics he has taken (and continues to take). His pediatrician says he's not where he should be verbally, but I'm not too worried about his hearing. 

Bedtime =)