Austin will continue to be followed by the intensivist (from the PICU) and GI in a team approach. The decision was made this morning to give him a break from his enteral feedings. His ostomy output has been creeping up and he had reached the threshold for "dumping". He's allowed about 40cc/kg. Since he weighs almost 4kg, he's allowed about 160cc of ostomy output. Yesterday he had 170cc. So around 11am this morning, they turned his feedings off for 12 hours to give his gut a rest. Austin's feeding tube also needed changed so he got to go about 12 hours without a tube down his throat! The tube was replaced late this evening in order to restart his enteral feedings at 11pm. They will be starting him back at 3mL/hr and assessing his rate daily. This decision to increase or hold the rate is made mostly based on his ostomy output from the previous day.
The skin nurse practitioner visited and helped tweak his ostomy bag change. I was able to do about 50% of it with her guidance and coaching. This is something we will do at home every 3-4 days. It's important to keep the skin around the stoma dry and clean. Austin also saw speech therapy, we mostly just chatted since he had a challenging weekend. He had less gagging and took his pacifier most of the day! Hopefully tomorrow we can restart his "dips" of breastmilk!
Praying for a quiet and restful night. Thanks to all for your thoughts and prayers! Also, just a reminder, we read every comment and all of your words of encouragement! Hugs to all!
Love,
Tara and Brian
Max and Austin
Another set of steps forward for Austin. Keeping his medical team and all the Jones' family in our prayers. Thanks for providing us with these updates!
ReplyDeleteContinued prayers! We love you all!
ReplyDeleteNice room! Looks homier than the PICU. Hope it’s more restful for everyone.
ReplyDeleteTara, thanks for your continued updates! I read every one, and send a big bundle of healing wishes off your way. I'm so grateful you are at Children's, where Austin is receiving the very best care! Someday, you'll get to look back on all of this and marvel at what you all went through, and how you got through! For now, be gentle with yourselves - there is no more important thing than being present with one another through this time.
ReplyDeleteIt's so wonderful to have such great medical care so close by, isn't it? We take it for granted until it's really needed!
ReplyDeleteTara- So glad things are progressing. Austin is a cutie and I'll continue to keep him and the rest your family in my thoughts and prayers. Also keep letting your CMS family know how we can help!!!! xoxo
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