Austin continues to do amazing things! As planned, he had his last TPN infusion on Thursday overnight! Apparently he thought it would be a little boring, so a trip to the urgent care for croup was completed. He had some congestion last week and Friday evening it changed to the seal like bark cough. By midnight I knew it was either take him in or NOBODY gets any sleep (well, maybe Max). About an hour later, a dose of decadron and we were back home, tucked in bed and breathing much better!
Labs were drawn yesterday and they are stable! Dr. Kevan is very happy with them and reminded us today she would like one more week of labs (next Monday) and Austin will have his Broviac (IV access/port) removed by the end of the month! Dr. Kreykes (surgeon) has been given the heads up! As far as we know, this is a quick surgery and in/out in one day.
The most exciting news of the day is GREEN BEANS! Our feeding therapists (both Capernaum and Eastern Carver County Schools) had suggested messy play several weeks ago. After getting reassurance from Dr. Kevan for an overly nervous Mom, Austin once again rocked it! The first concern with starting to transition to puree foods isn't his gut/digestion but whether or not he would have any aversions or difficulty moving the food in his mouth and then swallowing safely. We found out quickly this was not going to be an issue. We let him play with the spoon first to see what he would do with it, he waved it around and promptly put it in his mouth! I then gave him several small bites from the tip of the spoon and he LOVED IT! You can see in the video he's so excited, his little fists are shaking!
We're not exactly sure where we go from here. We started with green beans because they are actually a stool thickener. For now, we will stick to little tastes each day until we are able to meet with the dietician at MNGI to create a plan for transitioning from enteral to oral feeding. Austin still has his enteral feeding pump going 24 hours/day. He's getting about 3/4 formula and 1/4 breastmilk right now. He gets about 25 ounces per day through the feeding tube. We aren't exactly sure on the timeline, so for now, he still has one tube! So much easier than 3!
Enjoy this video, I know I do! It makes me smile every time I watch and I've watched it about 5 times this afternoon!
Hugs to all!
Brian, Tara, Max and Austin
That was so fun to watch!
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