Keeping up with Four Joneses!

Happy Sunday!  A little update on our tough little man. On Friday, doctors decided they wanted to take Austin to the operating room for his PICC placement.  We were hoping to avoid another round of anesthesia, but his safety comes first!  Since he had vomited on Thursday and he has Downs Syndrome, they felt better putting him out for the placement.  He did great, but woke up very sad.  He doesn't like the way his throat feels when they remove the breathing tube.  They had me go back to PACU (post anesthesia) to comfort him and we were soon on our way back to his inpatient room.  He did great on Friday evening and we restarted his feeds slowly.  He got up to 40ml/hr by Saturday noon and has tolerated it great!  40ml/hr will be his rate for a week or two until we get everything balanced out and then we will begin going up 1-2 ml/week with a goal of 53ml/hr.  Of course this goal could change when he begins gaining weight. With the ne...

One year ago yesterday Austin was rushed to the PICU and later the OR.  Over the course of the following weeks we learned many things, but two things that stand out....1.  We are VERY blessed to have Austin in our lives and 2.  taking care of a child with Short Bowel Syndrome is one day at a time. After working all week and trying some new things (imodium, pectin, decreasing his calories back to 20cals/oz), he continued to lose weight when mathematically he should not be.  We also ruled out a few other things and the end result was he is having malabsorption (dumping).  I'm going to do my best to explain this...Austin only has about 43cm of short bowel.  If we give him too much food (formula) at too quick of a rate, his gut can't handle the volume and he begins dumping.  In other words "it goes right through him" without giving his body time to absorb the vitamins and nutrients he needs to thrive.  Since discontinuing his TPN/lipds in June, A...

Austin is doing well!  Yesterday around 2pm we started him back on 1/2 formula and 1/2 pedialyte.  He also started imodium (scheduled 3 times per day).  He got 2 doses yesterday and will get all 3 today.  He tolerated both changes so this afternoon we increased his feedings to 3/4 formula and 1/4 pedialyte. To back up a bit, in summary since his last hospitalization at the end of August, he was short on calories and fluid volume so he began to lose weight and dehydrate.  I talked to Dr. Kevan and she wanted us to increase his rate from 41mL/hr to an end goal of 50mL/hr.  We quickly went from 41 to 47 and got stuck there as he started having issues with gas and intolerance.  At the time, we didn't realize it immediately, but he also started "dumping" (the formula was essentially going right through him so he wasn't absorbing enough calories or fluid).  So over the course of the last couple weeks, we've fought dehydration and lack of weight gai...