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, Austin has struggled to keep his feeding tube rate high enough that he's getting enough calories to grow and at the same time not too much to cause dumping and vomiting. So, after many discussions with Dr. Kevan this week, we made the right but difficult decision to put a long term IV access back in and restart his TPN/lipids. Because we do not want to put a time frame on anything we do for Austin, we made the decision to use a PICC line this time rather than a Broviac for IV access. The PICC line will hopefully be placed sometime today (and they haven't decided whether they will do it in OR or just a procedure). The PICC line will be good for a couple months and give us time to continually reassess Austin's nutritional needs. It doesn't require OR to remove it, so that is a bonus!
Having the PICC line gives us a "safety net" for getting him the nutrition he needs to grow. With the daily TPN/lipids, we can SLOWLY increase his feeding tube rate and hopefully be much more successful.
Again, this was a tough decision to make, but we know it is the right decision! Austin was a poster child until June and this summer has been so tough on all of us! We are hopeful this will give him the opportunity to thrive again!
We will be inpatient through the weekend and hopefully home early next week. Please keep Austin in your prayers as we make these changes and prepare to get back home!
Thank you so much for all your love and support!
Happy Friday!
Tara and Brian
Max and Austin
My heart goes out to you - so hard to see your child go through these things. Sending much love!
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