A Whole New World

Day 148

 

An update from Wednesday through today:

 

As most of you know from following us on our new website or through our Facebook page, Ethan was discharged from the hospital on Wednesday, November 20, after 145 days spent between the hospitals in Indianapolis and Cincinnati! 

A huge step in our journey and we have done relatively well back at home. The timing was wonderful as Scott's brother Marc was in town from Seattle to lend us his helping hands. Setting up nursing care has come with its benefits and challenges as we establish our team of great helpers. Once we have our core team we anticipate it will run smoothly, as each provider comes to learn about Ethan and his needs. It's been great being home with Ethan, Elyse, Zak and Cincy, and they all seem to be acclimating to our new routines. We even took Ethan to his first set of outpatient therapies and met some of the skilled PT/OT/ST people who will help Ethan continue the treatments he started in the hospital. While it was difficult to leave our hospital family, we made that leap and have found our new world to be not as scary as we thought. 

After spending 141 days with the amazing staff at Cincinnati Children's Hospital, we left with good amounts of confidence and the knowledge that they all still "have our backs" as we transition to home. 

At the time of this post, we have taken an unexpected (and hopefully short-lived) detour back to CCHMC.

This small bump will not deflate our determination. Ethan's stomach started acting up around midnight, and by this morning we headed for an x-ray, a stop in the ED for IV fluids and back to A4 (Ethan's home away from home). This was not the reunion we had hoped for with Ethan's rehab team, however we know we are in good hands with the doctors and nurses who have cared so well for him previously. We plan on this being our final Caring Bridge post, so please continue to follow our journey either through our website or Facebook page. Thanks for your never ending  strength, support, encouragement and love over these months.

 

Stay strong!

Alexia and Scott

 

 

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