Update on Cole's progress ~ Appointment with the GI

After much debate and the recommendation by the neurosurgeon, we decided last week to schedule an appointment with a GI to discuss Cole's situation. Amazingly, given I was wiling to go to ANY office, we were able to get an appointment with Dr. Louis-Jacques Monday, August 10th.  Ironically enough, he was the same doctor Cole saw at INOVA Fairfax in 2011 when he was admitted for not breathing.

We had a good appointment in the Shady Grove office which was about an hour from Baltimore.  He was very thoughtful and worked very well with Cole.  We discussed the situation and he said it's "plausible" that the constipation could cause back pressure on the shunt that would cause headaches and vomiting, but he didn't seem convinced.  He did agree, however, that we need to solve the constipation problem.  After the exam he said we definitely need to be more aggressive since the schedule we've been following hasn't produced the desired effect.  So he put Cole on a very aggressive two day cleanse.  Cole is taking 7 caps of Mirilax dissolved in 32oz of Gatorade that he needs to drink in 4oz doses every 30 minutes (needs to be finished in 5 min) until all 8 doses are taken.  I decided to setup an incentive program with a count down so he could see progress.  I also decided to use small Dixie cups and very large straws (shake straws) to help it go down quicker and see the progress and how far away the end goal still is.  We were VERY excited to find a Target in Canton (about 10 min from the hospital) where we could find almost everything we needed.  A quick trip to CVS and we were able to find the XLax chocolate squares that will be added on Day 2 (and will double as an "incentive" and on Day 3.

Cole is doing a great job - the first incentive was a banana and he was SO excited when he finished the first cup.  Needless to say the excitement vanished quickly and by step 5 he decided he didn't want Heatwave (the end goal) anymore.  We powered through and were able to get all the Gatorade/Mirilax into him.  We are now on Day 2 and it's going well but he's feeling very bloated so it has been much  harder since he knows what to expect and would rather not drink than get new toys.

The next step is to hope the cleanse works, then do a repeat x-ray to verify the cleanse was able to get everything out.  If so, we have a regimented Mirilax schedule to carry out moving forward.  If not, we'll discuss next steps when we go back on September 2nd.  Just praying this works and there aren't bigger issues causing the constipation.  Also hoping this solves the head aches, lethargy and vomiting.  It would be nice to cross a few things off my stress list!