HOME. AGAIN. Or was this a dream? We were very excited to bring Ethan home on Saturday, April 25. We felt grateful that he avoided a trip to the Operating Room during that hospitalization; his medical team was able to treat him with non-surgical methods. Ethan took those two weeks in stride. When we brought him home that Saturday afternoon, he was back to his laughing and smiling self. We tried to take the weekend to rest and recharge, as best we could before hitting the rehab circuit on Monday. Ethan benefits from his rehab regime and he loses so much when he is hospitalized. And with the weather improving we looked forward to spending more time outside.
Our short—correction, miniscule—amount of time away from the hospital came to a crash on Monday, April 27, when once again Ethan was readmitted. We think this was an all-time record of return to the hospital. It felt like we were given a 48-hour leave for good behavior and then reprimanded for disobedience!
Ethan presented with similar symptoms to his prior admission—distended abdomen, intolerance of feeds, stopped GI system, urine retention. A 4-hour Monday morning appointment with his Complex Care team gave way to a “fast pass” back in. No passing through the Emergency Department this time. We were grateful for the small things. And this time we were taken to a room with a view! It’s amazing what a little natural light does to one’s overall mood.
After many tests, it was discovered that Ethan had a UTI (urinary tract infection). You may remember from a previous post that any infection can lead to an ileus, so we were hoping this was the case (truly the best case, and non-surgical, scenario to explain the above symptoms). Antibiotics were brought on-board and we waited while his feeds were restarted to see his level of tolerance.
Once again, though, we found ourselves in an all-too familiar place, where everything—EVERYTHING—got dropped on the floor while we attended to this unexpected hospitalization. We hardly had been given a chance to take a deep inhale in the outside world before doing an about-face. Choosing the most important events (Zak’s debut as Loveland’s Mayor-for-a-Day, Elyse’s birthday, watching one of Zak’s final tennis matches as a senior, attending Elyse’s Girls On the Run 5K), we appreciated the support of so many friends who allowed us to be a presence. Not to be forgotten are those who gave us a night off so we could attempt to recharge our batteries!
Here we are, 11 days later, and it is May 7. How did we get to May? I believe we have spent half of 2015 in the hospital…Fortunately, the UTI has been dealt with and it looks like Ethan’s GI is finally starting back up again. Barring any other unforeseen issues, maybe a discharge at the beginning of next week?
Eventually we will be discharged, hopefully sooner rather than later. And then it will be back to researching additional therapies and treatments which may bring benefit to Ethan. Thank you for all of your thoughts and prayers during these ups and downs. Thank you to all of our Team Ethan volunteers who spend time with Ethan and us – during the day and overnights at the hospital. Thank you to Ethan’s home nurses who have to deal with Ethan’s “Away Schedule.” Thank you for following our blog and Facebook page and thank you to those who continue to support Ethan in so many ways, including contributions to his HelpHOPELive Fundraising Campaign (www.bit.ly/hhl-jointeamethan) which covers Ethan’s uncovered and uninsured medical expenses.
We want to focus on the future. We want to keep moving forward. We want Ethan to come home and stay home.
With love and strength,
Alexia and Scott