The Last Six Weeks

My goal when initially sitting down and starting this blog was to get everyone up to date on what has been happening with Charlie.  We are so often asked what has been happening, what is new, what are the next steps and how is she doing?  Oftentimes, it is hard to answer without the entire backstory.  Judson and I decided that writing this blog together would be the best way to inform everyone.  Although I began writing a month ago, the story really began when our "fishing expedition" began back in the beginning of April.  We knew then that THIS week was going to be a big week and it was my goal to have the blog up to date by now.  So, this post will be the last to fill everyone in on past events and from here on out it will all be current.  That being said, the last six weeks has been quite the roller coaster.  Something, we have come to find is quite typical when you have a baby with Gastroparesis.

The real problems began when she caught a cold which developed into what the pediatrician believed to be Viral Croup.  Now, ordinarily I would not have thought much about the Croup (granted, certainly not fun...Levi had it and we panicked) but we had been there and done that and knew what to do.  The problem was that Charlie who ordinarily does not want to eat or drink took that to a whole new level now that she did not feel well.  What we found was that we could barely get even the slightest bit of anything down her.  We were lucky to get her to drink three ounces in a 24 hour period.  We were on the verge of going to the ER on several occasions as she was getting dehydrated.  Just as we were making the call she would take a few sips, buying a few hours.  This went on for DAYS!!! The doctor told us that this was a sign of things to come: whenever she gets sick we will always need to be careful.  We also needed to stop the Miralax which threw everything regarding her pooping situation way off track.  The doctor mentioned that a low dose of antibiotics would normally be given to help the situation.  The silver lining to it all was that we didn't have to put her on any antibiotics since she is already on them daily :)

We did, however, make it through and did so with flying colors I might add.  Once she was better she actually began eating like a champ.  Like nothing we had ever seen her do before.  She had been eating two to three times what she would normally eat.  It was quite a severe turnaround.  We got the Miralax up and running and found the right dosage and dare I say, everything was as good as it has ever been.

Two weeks later we went in for our next appointment with Dr. P, the motility specialist at CHLA.  Charlie had gained an entire pound since the last appointment.  I must say that we were in shock!  It was awesome.  She explained that oftentimes after being sick and dehydrated that these little bodies can respond in just this way, putting on this large amount of weight.  She confirmed that the whole "disease" is very much a roller coaster and that it could change and turn at any moment and to not necessarily expect the weight to stay on or the eating habits to stick around for long.

The rest of the appointment was spent discussing our upcoming manometry testing.  This Wednesday, Charlie will be admitted to CHLA for a very specialized motility test.  They will use cameras, sensors, etc. to watch Charlie's stomach and upper parts of her small intestine from the inside.  Our hope is that we will find out more about what is going on.  Is she taking the right medication, dosage, could there be another underlying cause, etc?  They will also repeat the Gastric Emptying Scan as an inpatient, we will meet with a nutritionist and HOPEFULLY leave with a lot more answers.  Unfortunately, Charlie will need to go under another general anesthetic while placing all of the tubes, lines, cameras, etc. which will then run up and out through her nose (yep, should definitely be fun trying to manage that situation.)  To add insult to injury we will need to keep an incredibly active 21 month old little girl as motionless as possible for the duration of this test. This becomes increasingly risky because of the previous bronchospasm.  Our fingers are crossed that this one will be smooth sailing.  If all goes well, our hope is that we will only need to be admitted for two days.  If however, they need to collect additional data or there is another problem that arises that could get extended.  We will be updating everyone on the blog throughout our stay!!!!