Still tapering...

Over the past few weeks, we've been enjoying our time outdoors and a Minnesota summer!

Mr. Austin has a few updates, mostly great news!

• His last night of TPN (IV nutrition) was June 12 after a week of 1/2 calories.  Since then he's just gotten normal saline (NS-IV fluid without all the nutrition) we've decreased his NS weekly (first week was 450mL/day, last week was 250mL/day and this week he will only get 100mL/day.  He has tolerated the decreases well so far.  We have to watch is wet diapers, saliva in his mouth and signs of fatigue.  This would indicate possible dehydration.  He seems to be more thirsty and has been drinking more water than he has in over a year (his most has been 50mL in one day-about 1 2/3 ounces so baby steps)!
• He reached his goal for his enteral feeding rate of 60mL/hour last week!  This may change as the only bad news we have is Austin has been loosing weight since stopping the TPN.  He was approximately 9.8kg the first week in June and today he was only 9.2kg (this is about 1#5oz).  His dietician is going to check with Dr. Kevan to see if she would be okay continuing to slowly increase his rate to 63mL/hr in hopes he would start gaining weight again.
• Austin saw Dr. Abby Meyer and audiology on Friday.  He passed ALL his hearing exams for the first time ever!  We all knew he could hear, but we are so excited to have it official!  Dr. Meyer was very pleased and so are we!
• Also on Friday, I had a telehealth appointment with hematology.  They are pleased with his iron studies and hemoglobin.  His hemoglobin is hanging around 10.2, which is good for him and his iron stores are good enough to cover a slight drop in hemoglobin.  So, we are just continuing to monitor and when these numbers start to decrease, Austin will most likely get an infusion of venopher.  Venopher is the less potent iron infusion that can be done by his PHS IV nurse rather than at Children's.  Back in May, he received 2 doses of Injectopher.  They will draw these labs again 2 weeks from today.

We hope everyone is happy, healthy and supporting each other during these tough times!  I have to remind myself everyday to be the change and one day at a time.  Many different challenges to face and for every individual, the challenges are different!  Love others, they are worth it and you are worth it!

P.S. One prayer request...weight gain for Austin!

Virtual hugs,

Tara and Brian

Max and Austin