Ethan Update - A Flicker of Light at the End of the Tunnel
Ethan is finishing Day 11 of his most recent hospitalization. The severe pain has been successfully managed and he is weaning off the pain med combination that delivered the much-needed relief. As good as this news is, there are challenges still ahead before discharge. Ethan needs to prove he can receive nutrition and hydration through his GI System – typically not an easy task for him. The other challenge is more mental. Given we do not know exactly what caused Ethan’s severe pain event on April 27, we cannot be confident it will not return. Add this to a long list of potential issues that could send Ethan back to the hospital at any time. Not an easy way to live for Ethan or for us. This will be a very busy week – Ethan will remain at Cincinnati Children’s Hospital until he demonstrates GI success, Alexia will pick up Zakary who is finishing his sophomore year at Washington University in St. Louis, and Scott and Elyse will try to have a typical/not-typical week at home. We will all juggle commitments at work, home and the hospital. With so many unknowns, this current admission has been very challenging emotionally. Not understanding the source of Ethan’s severe pain is scary. It creates a lot of worry. As of today, Ethan has spent a total of 373 days in the hospital, and counting, since his injury on June 29, 2013…that’s 26.5%, a statistic that is unimaginable! We hope the flicker of light we see grows stronger this week. We all need Ethan to get well and come home.
Alexia and Scott
Apr 30, 2017
Dear Team Ethan,
Nothing is normal anymore. Nothing seems to come natural or easy. We are tired. It has become very difficult to post updates on Ethan. Please know that all of your support is appreciated - your prayers, your love and your contributions to Help Hope Live.
It has been a long time since we have posted as we try to stay positive and forward thinking, however, the past three weeks have been incredibly difficult for our family and for Ethan.
Ethan has been in the hospital three times over the past three weeks. Each admission has been for unrelated reasons. But each admission is a challenge. The day or night begins with 4-6 hours of assessments in the Emergency Department followed by hours of settling into his new room within the hospital. Managing the discomfort is always a priority, but not always achievable. This current admission is due to severe pain and discomfort and managing the pain is more challenging than ever.
Ethan's Medical Team is working to identify the source of his pain. Until more information is known, Ethan is receiving several different pain medications to keep him comfortable.
Please send Ethan strength and prayers (Reminder: his Hebrew name is Eitan Chaim ben Elisheva v'Shmuel).
Chazak - Stay Strong, Alexia and Scott
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