Trying Something Different

So I know I haven't posted many updates lately. To be honest, we have just been in a bit of a holding pattern--doing more of the same.  We have been working very hard to manage his digestive system as unpleasant as it may be at times.  Lots of ex-lax (LOTS!) and lots of enemas....which all lead to a lot of cramping and upset.  These are high volume enemas...not a typical child enema.  It has been a frustrating pattern, and I suppose it discourages me from posting.

At our last appointment with the GI, we decided it was time to try something new.  What we are doing does not at all feel like a solution to me.  There must be a better way to manage this.  So we are back to the feeding tube...again.

This time we are using the feeding tube in a unique way.  Instead of using it for nutrition, we are using it as a way to run fluids through his little digestive tract, and hopefully, keep things moving.  So every night, we are hooking him up to a pump and running fluid through the tube in order to clean him up and stimulate his colon to move.  He will still need the Senna, but hopefully, it will be a much more reasonable dose.

The doctor had him admitted to Children's on Monday morning, and we got to go home yesterday evening. I put the tube in his nose, and he tolerated the feed, so thankfully, it was a short stay. 

My heart broke a little when we pulled into the hospital driveway, and he immediately said, "no, no" and started crying.  He knew exactly where he was. Again, when we walked into his room, he began to cry and said, "bye bye. let's go." Bless his little heart. He is so familiar with a hospital at such a young age. Remember when I posted about this world that is becoming all too familiar(--nearly 2 years ago!)? I guess it has for him, too.  It made me think of all the sweet children who spend as many days in a hospital as they do out of a hospital.  My heart really goes out to them. We are truly blessed that Beckett has done so incredibly well, and Brant, age 5, has never once had to spend the night in a hospital. 

True entertainment for a little boy--Watching the big trucks go by on the freeway and playing with his own big truck!

Thank you for praying for us. We are very thankful for all the encouraging messages and phone calls.  We are praying this "top- down" approach works for Beckett.  When I explained the reason of the tube to Brant (and our hope to get him off enemas), he replied, "that's good. So I can spend more time with him in the evening.  And he won't have to spend all night in the bathroom." Exactly.  This is for quality of life.  Here's hoping it works.  It was definitely time to try something different.  I will let you know how it goes.

Despite getting "messed with" every 2 hours (or less), he managed to get a little sleep.