First of all, I just realized my last post was on 12/27/18, so Happy New Year! We hope 2019 brings love and health to all!
This past Monday was a fabulous day! We got to hang out with Max and celebrate Austin's 5 month birthday! We ran some errands with Max and then made a first time visit to the new Shakopee Community Center. Congrats Shakopee, you did an amazing job! Max enjoyed the indoor play area and then we walked a few areas of the facility. Next time, the pool!
Austin is weighing in at 6.1kg (~13.7 lbs) and about 63cm (~25 in). He has mastered the growth chart and is right on target for his diagnosis and age! A little has happened in the last month (if it was a lot, you would have heard from me sooner)! He has continued to tolerate increases in his enteral (tube) feedings and is currently at 16ml/hr. His outputs have been good the last couple days so I'm thinking we will advance him to 17ml/hr this weekend. His labs have been great and therefore, the dietician and Dr. Kevan decided to try a decrease in his TPN/lipids calories a couple weeks ago and he has adjusted beautifully! Austin continues to work really hard on his physical therapy exercises and is getting stronger and stronger every week!
Today was a marathon...of doctor's appointments! We started at Minnesota GI with Dr. Kevan. She gets weekly updates on Austin and is always keeping an eye on him "behind the scenes" so we expected this visit to be fairly uneventful (and it was)! We discussed how well Austin is doing and the next steps. Once he has his reanastomosis surgery (we will get to that in a minute), he will begin using his colon again and therefore a significant increase in the absorption of water and sodium. This will lead to progression of increasing his breastmilk intake and decreasing his TPN/lipids. We were reminded this is not a quick process. We're talking a few years of tapering, but she is optimistic based on how well he's doing now! Another main discussion point was changing his feeding tube to a Mic-key button. The button is much easier to use, maintain and more comfortable for Austin. The last big topic was whether or not to increase his oral feeds. As a team, we decided the benefits were not large enough to risk any setbacks for Austin at this time. He still loves his five 5mL bottles each day and increasing by 1-2-3mL is not going to impact his ability to feed orally when he's ready! Dr. Kevan will see Austin again 3 months after surgery. We really love Dr. Kevan! She is definitely one of Austin's biggest cheerleaders!
Moving on, we headed to Children's Minneapolis to see Dr. Kreykes in Pediatric Surgery. Another great conversation with a fabulous physician. He is also very pleased with Austin's progress and growth. He spent time explaining Austin's upcoming reanastomosis surgery in which he will reconnect his small intestine to his large intestine and predicts he will do very well! This procedure will take down his ostomy. We are planning for an approximate week long hospital stay. Most of that time will be allowing Austin's gut to rest, make sure all nutrition is making it's way through the point of connection, and then regaining balance of his enteral and TPN/lipids nutrition. They will monitor his labs closely in order to make any adjustments prior to returning home. In the hospital, they make daily changes to his TPN/lipids and at home they make weekly changes. So, we will keep doing what we are doing until surgery on March 14th!
Our last stop (before Jimmy John's because we were starving) was with Deanna Johnson. She was Austin's skin integrity nurse practitioner while inpatient last fall. I contacted her last week because Austin's growth has led to increased movement (great problem to have!). This has made keeping his ostomy bag dressing in tact more challenging. As I knew she would, she met with us to come up with a new plan. Austin had developed some dermatitis and yeast growth that was preventing the dressing from staying stuck to him! We are hopeful the new bag and dressing will allow his skin to settle down and not be so "on fire"!
Whew! We returned home this afternoon exhausted, but super pleased with the news we received today! You, our team of warriors, continue to impact us on a daily basis! Thank you so much for keeping us in your thoughts and prayers! Until next time...
Hugs and keep warm!
Brian and Tara
Max and Austin
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