I started this post earlier and thankfully was able to start over! The last couple days have been a little frustrating. We were warned that clinically (the way Austin looks and acts) would improve much quicker than medically. Well, unfortunately, they were spot on! Austin has been weaned off most of his respiratory therapy over the last 2-3 days except for his nebulizers twice a day (sounds like we will be going home with those). Starting on Wednesday, we did trial periods completely off all oxygen and he does pretty well while awake and for a few hours, but then his O2 sats start to dip either while napping or just over a period of time. So far, he's needed anywhere from 1/4L to 1L at times over the past few days.
So, today Dr. Ozolins consulted with cardiology to make sure he wasn't missing anything and also asked a pediatric pulmonologist come and talk to us and check on Austin. As a team, the decision was made that it was safer for Austin to go home on oxygen than to stay inpatient. Well, this threw me into a tailspin! Those who know me well enough know that quick change is hard for me. I had to process this....now we are adding oxygen tanks, a pulse oximeter monitor (measures his oxygen levels) and another nebulizer to the mix of the TPN/lipid pumps and feeding pump. And to top it all off, "the snowstorm of the year" was just about to start! With a super supportive husband who has spent every night here this week except Tuesday night, we made the decision that rushing to get home tonight was not our best option! Our plan is to head home sometime tomorrow...one more sleepover...let's make it a well rounded 15 nights here at Children's!
So, a couple hours later a PHS had a respiratory trainer was here to train us on the new equipment that hopefully we will need for a week or less! The plan is to ride out this snowstorm and finish getting everything we need from PHS lined up for delivery tomorrow and some other small discharge things taken care of and head home sometime tomorrow.
Dr. Arora (from Minnesota GI) has been rounding this week and Austin is back to his feeding rate of 40mL/hr and he's been tolerating this great! In fact, we think that his stools seem to have a little more consistency and we are optimistic the budesonide may be doing exactly what we were hoping for! Cheers for fewer blow outs and less wardrobe changes!
Thank you so much for all your thoughts and prayers! Praying for home tomorrow!
Stay warm and safe!
Tara and Brian
Max and Austin
Tara, I know the feeling about change. ...and then all of a sudden you’re in it and it’s become routine. I hope for you, that this new treatment will go well and be very temporary.
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