We spent Friday morning at the Minnesota State Fair and had a wonderful time! This is the first opportunity Max has had to ride the rides and experience some of the wonderful tastes of the fair! I think the pictures will tell more than my words so I'll let you enjoy!
On our way home Austin threw up for the 2nd time in 2 days. He also had not had a wet diaper all morning. After our rollercoaster of a summer, we decided a stop at Children's on the way home was the best decision. As in the past, Austin's labs showed no signs of dehydration and he continued to be his happy go lucky self! However, GI was contacted and the decision was made to do a follow through study on his GI tract and possibly an endoscopy (camera down his throat to look at his esophagus). So, the decision to move to inpatient was made and 6 hours later we were back in a room on the 6th floor.
Yesterday morning Austin did the follow through study. This was done in radiology where they put barium (contrast) in his g-tube and then took consecutive pictures to study the track of the barium. Ultimately, looking for an abnormalities or obstructions. The study did not show either. So, no answers. Yesterday afternoon we had a lengthy conversation with Dr. Arora (MNGI) about what next steps should be. He (and Dr. Kevan) are not convinced the endoscopy would tell us anything we don't already know or are already doing. We know Austin has reflux and he's on Prilosec to minimize the acid in his stomach. What we decided was to remove milk from his diet as milk can increase the severity of the reflux. We also discussed his disinterest in his bottles and decided to just keep offering and give him what he doesn't drink through his g-tube.
Then....the pediatrician team came in and wanted to monitor him since he was just restarting his feeds through his feeding tube and he really hadn't pooped. They returned today with Dr. Arora and we had a care team meeting. Main concerns are feeding and weight gain. Decision was made to make diet changes and they are significant enough they need to be done inpatient. After much discussion, the final decision was to increase his the calories per ounce in his formula (from 20kcal to 22kcal), increase the rate from 35mL/hr to 40mL/hr and decrease his bottle feeds to 30mL (1 oz) five times a day. This takes the pressure off Austin to drink his bottles. We will offer him his bottles and if he only drinks part or refuses, then we just feed it to him using his g-tube. This will ensure he's getting the calories he needs to begin growing again. The reason for the feeding issues is still unknown. We will rely on Austin to lead the way!
Discharge to home is dependent on Austin's tolerance of the changes. Please pray Austin makes these transitions without incident and we can all be home soon!
A VERY special thank you to all of our family and friends who had planned to attend both Austin and my (surprise) birthday parties this weekend! We are so appreciative and respectful of the time you had set aside for us and for many of you, the travel and the preparation of food to make it happen! We are truly bummed they had to be cancelled.
Have a fabulous week!
Hugs,
Tara and Brian
Max and Austin
Tough times. Praying for good outcomes for Austin. So sad to have missed your parties ☹️. You followed your gut and did what you needed to do for Austin’s sake. It’s hard but you guys are being the parents to Austin that you could possibly be.
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