Learning to Celebrate Change!

For those of you who know me well, I'm a type A personality who loves to be the planner so I know exactly what is going on AND change is hard!  I have learned my best coping skill is to take time to digest it and lean on my husband who just gets me!  I will freak out and then back myself off the ledge!  Well, yesterday was a true test for me!  Through the jumping for joy and the tears of "oh my, is this really happening?", we have all survived and are still here today.  I have backed away from the ledge!  WE can do this (and right now)!

Here is the exciting news!  I got a message yesterday around 11am that Austin's dietician at PHS would be recommending to Dr. Kevan that Austin's TPN be discontinued this week!  Yes, discontinued, not decreased, discontinued!  My first thought "no TPN, no nurses"!  My second thought was "Christmas, this kid just blew that goal out of the park!"  If you remember back to my post surgery update in April, the goal was set that Austin would be off TPN by Christmas.  Well, I looked at my watch (that has the date on it), more times than I could count yesterday - ask Nicole Urbatch if you see her!  Every time I looked it said "June 4, 2019"!  This kid is an overachiever!  To date, he has met nearly every goal in exceptionally fast time frames!

Medically, Austin was down to 100kCals in his TPN, which was only running over 12 hours a day (8p-8a) and still exceeding his weight and lab goals.  Therefore, there is no reason to continue the TPN as he is getting all the nutrition he needs from breastmilk and formula.  We began a transition plan from breastmilk to formula about 3 weeks ago and he has tolerated it great!  His enteral feeding rate is at 31mL/hr and his bottles are up to 35mL six times a day!  His bottles are still breastmilk as he doesn't care for the taste of the formula.  Do we have a picky eater?!  His weight is 8.43kg (~18lbs. 8oz.) and his height is 71cm (~28 inches).

The tentative timeline is as follows:  last night of TPN will be this Friday, labs on Monday 6/17, last day of nurses is Friday, 6/21 and surgery to remove his Broviac (IV access) will be scheduled during the last couple weeks in June!  We will still have IV and dietician support through PHS as we transition through the next several weeks.

What does this change?  Everything!  First and foremost, Austin's safety!  Getting rid of the Broviac decreases his risk of infection to nearly zero, our daily routines, our ability to travel much easier, Austin can go swimming this summer, essentially so many great things that I can't list them all!  We are beyond excited to have this chapter behind us and for Austin!  We are so proud of his perseverance and go-getter personality!  We know he will do great things...this is only the beginning!

So as we CELEBRATE THIS CHANGE, please keep Austin in your prayers that everything goes smoothly and as planned!

Lastly, brief reminder, we are excited to be participating in the Walk for Amazing this year to support Children's Hospitals of Minnesota!  This journey is possible thanks to them and we are doing what little we can to make life possible for others!  Thank you to those who have already supported the walk and thank you in advance to those of you who will!  Feel free to join us on June 22nd - the more the merrier!

Walk for Amazing - Austin's Adventurers Team Page

Summer has arrived!  Enjoy!
Love,
Brian, Tara, Max and Austin