Meds

We seem to have found a good combination of OTC and prescription medicine that keeps Auggie comfortable, produces daily bowel movements and reduces his stomach acid just enough to keep the pain down.  He takes ranitidine (zantac) for his reflux, and cyproheptadine (periactin) to increase his appetite.  We also give him 1 ml of milk of magnesia and it works wonders!!

Weaning update

We completed another 3 day trial wean and again Auggie made progress.  He now will take solids via spoon - he took 3 tablespoons on the third day of the trial wean.  He also takes a bottle in his mouth - took 1/2 oz. in 20 minutes.  That's progress!!  The next step is to propose a full blown wean - in other words, wean him completely with no going back!  We hope to start a modified Graz/Markus Wilken type wean on January 10th.

Results: Gastric Emptying Study

Liam had a gastric emptying study today.  Radioactive material was mixed with 10ml of formula and then I gave him a bolus while they scanned his stomach for 20 minutes.  We took a break for 20 minutes and then had another 20 minute scan.  Results showed that it takes him 32 minutes to empty his stomach which according to the doctor is within the normal range.  Of course I questioned whether the amount (10ml) was sufficient to tell us anything... they also did not see any refluxing, so it's more good news.

3 Day Tube Weaning Trial

The doctor approved another 3 day trial.  We're on day #3 and so far he has taken more by mouth than during the last 3 day trial, but not enough to think about pulling the tube out yet.  He has a gastric emptying study on Tuesday and a follow-up with the doc so we'll see how to proceed next.  I'm hoping for another trial just before Christmas. We've focused on fluids since that's waht he'll have to wean to.  We've tried neocate splash in different flavors, swedish rice valling, blueberry/carrot juice, water, and sugar water.  We've determined that he likes Swedish valling in a bottle with a newborn nipple with a hole cut into it and a tilty sippy cup.  Both of these make it easier to feed him since they have a built-in tilted feature.  I'll post a picture soon when I find the charger to my camera's battery pack!

Results: Eye Exam

Auggie had an eye exam yesterday to check for posterior embryotoxon - he does not have it.  This is great news - it just about rules out Alagille Syndrome.  That's a relief. 

Tube Weaning Trial Results

After 3 days of getting only 50% of his usual fluids and 25% of his usual calories, Auggie did take more by mouth on the 2nd and 3rd days, but it was negligible.  He took a bottle of Swedish valling - kind of like smooth runny porridge.  I had thickened it and cut a larger hole in a newborn nipple.  He took about 15ml of this on his third day.  He never really got cranky or showed us in other ways that he was hungry.  Now we regroup and discuss this with our doctors and wait find out how we should proceed next.  I have a feeling that this is going to be a long road....