A couple Small Bumps

Austin had an okay weekend.  Not much progress, but he didn't go backwards!  His enteral feedings are "parked" at 4mL/hr as his ostomy output has continued to go up a little each day.  Dr. Fereci said he pushed him pretty hard during the week and now we just hold off on increasing his rate for now.  The hope is that his ostomy output levels off rather than continuing to increase.

Our other big hurdle has been gagging.  He has struggled with episodes of gagging (lasts about 10-15 seconds) and happens about every hour or so.  They did a chest x-ray this morning just to make sure his feeding tube is in the correct location and it is.  There's no good explanation for the gagging so we think it's either his gag reflex from the feeding tube or maybe a little bit of reflux.  However, I'm not convinced it's reflux because he's not spitting anything up and he's on the max dose of prilosec (for acid reduction).  Overall, he just hasn't been as comfortable the last couple days.  A lot of wiggling around and not much good sleep.  He can have Tylenol, it helps a little.  Hoping we can get our smiling and squawking little guy back soon!

Tomorrow brings a new team of doctors (intensivist and GI) and therefore a new set of eyes!  They will be with us for the next week.  Sounds like we will be here for at least another couple weeks.  During that time they will decide at what point he has reached his max rate for his enteral feedings and then begin adjusting his TPN/lipids so he doesn't have to be hooked up to his IV all day everyday.  This is a very delicate process.  They will also increase the frequency of his lab draws to monitor his electrolytes, minerals and vitamins (including glucose) very closely while adjusting.  The reason it shouldn't be done at home.

Thanks so much for your continued thoughts, prayers, support, text messages, visits and love!  You have no idea how important you are for our whole family!

Love and hugs,
Tara and Brian
Max and Austin