Change of plans...

Sorry for the delay in posting, it has been quite a week. Some of you may have been wondering how our trip to Riley went this week. Well, it didn't happen. Tuesday evening, around 6:00, Gabe started vomiting and didn't really stop until Thursday evening around 8:00. It was hard to see him so miserable and not his usual happy, smiling self. He was often listless, and alternated between sleeping and fussing. By Thursday he was hungry and obviously thirsty. With the wet diapers coming few and far between, we worried he was getting dangerously close to dehydration and a trip to the hospital. We kept putting the pedialyte down his tube and even dripped it into his mouth to try to help his thirst. Gabe and I changed clothes multiple times a day and the washer was running almost constantly to keep us supplied with fresh linens, burp rags (or vomit rags in this case) and clothing. We alternated sitting in the big brown chair, holding him, comforting him and trying to keep him hydrated. Gradually the nausea seemed to give way to hunger and we cautiously fed him a mixture of pedialyte and rice cereal. Eventually he did keep it down. It seemed initially that this would be a frustrating delay in progress, since we missed his swallow study and follow-up appointment with developmental peds, where we would surely discuss moving forward with plans to get Gabe more orally oriented. Once again, timing proved to be a key factor that we couldn't understand or see in the moment, but positives emerged from a seemingly bad experience. In Gabe's desperation to be fed - he got a hold of the syringe I was using to slowly drop liquid into his mouth and sucked it dry. This pattern continued and Friday morning, after a night free of vomit, I mixed some rice cereal and pedialyte in his sipper cup, and he downed 4 ounces!! Previously we were excited if he took more than about half an ounce by cup. We had him checked out by the pediatrician, who agreed he seemed perfectly fine and really only lost a few ounces off of his weight despite his little ordeal. We also discussed his oral accomplishment with both the pediatrician and his OT, who both agreed that Gabe has shown he might be ready for a more aggressive approach to getting him less reliant on his feeding tube. Ginger (OT) had told us before that one approach to getting a child more oral is to use pedialyte down the tube for 48 hours to keep them hydrated and in-balance with electrolytes, but also to get them good and hungry. Well, this is basically what happened and it had that exact result. The new plan is to try to push him to take as much of his milk/formula through the cup and supplement fluids through the feeding tube to contine to keep him balanced and hydrated, but to rely on oral feedings to satisfy hunger. We will probably still put extra milk down the tube at night so he doesn't get short-changed nutritionally during this transition, but we are off to a slow but encouraging start so far. He did take about 2 ounces of milk in the cup this morning and also some cereal mixed with milk. We figure his tummy will probably only tolerate so much for a few days anyway, since he had very little in it for almost three days.

Once again, we see proof positive that there is another plan at work, separate from the one we have laid out. We continue to learn to adapt and also to listen to the subtle whisperings. I have more I want to say about this, but I am out of time. Time to get on with the rest of the day in our busy household!! I'll return as soon as I am able. Don't look too closely to my typos, I haven't had time to proof-read this posting...