Disney Cruise Lines....best vacation/low maintenance planning ever.
Owen's wish trip was so much fun. He surprised us with health and endurance that we weren't sure he was going to have. He got in the ocean a few times, swam with stingrays, went down a water slide, kayaked, and did a fine job eating cruise food and shopping the markets. If you pictured any of those activities done at regular pace or without variations from the most normal way they are done, it wasn't quite like that but definitely willing to try them all. I will post an entire cruise vacation plus photo blog post later. For now enjoy this super cute picture.
With so much fun over the last week, it's hard to share the not so fun news. Owen made it home from our trip feeling very tired and started exhibiting some symptoms such as a rapid heart rate and heavy, sort of labored breathing. He didn't really complain of pain but within 18 hours of being home I could tell he was not feeling very good at all. He was not sure if he wanted to go to the Dr or better yet the ER because if was early evening by the time we started debating. We agreed it was time to get these symptoms checked out. It was clear after a quick chest xray that his left lung was experiencing issues. We know there is tumor activity in the lungs, but it was evident on the xray that his left lung was not fully inflated. Diagnosis was fluid surrounding the lung lining and causing a nearly completely collapsed lung. He was breathing on his own, no oxygen supplement and really not too uncomfortable. Either that or his pain tolerance level is super human.
Since then we have had a procedure to drain the fluid with a chest tube, morphine pain control and very little oxygen supplementation. The tumors cause the body to eventually reach a point where the lungs cannot adequately reduce the fluid on their own, and in addition the tumor tissue has week blood vessels which easily bleed and add to the fluid accumulation. At this point we are not sure exactly how the body will respond long term to more fluid build up or exactly what procedures we feel are adequate or too aggressive to take care of the fluid, but we are in conversation with doctors to make that decision. Beyond this latest event he is experiencing increased back pain that we are trying to manage with pain medication which up until now has been an issue for us at home.
It is so great as always to have prayers, kind words and acts of love and kindness to help us through this time. Owen is strong. His caregivers are always surpised by his strong and patient attitude. He is kind even under pressure and pain. I would not say I would respond so well, but he is rarely too sick or in too much pain to share his sweet side. He's lucky to be surrounded by family and loving friends and neighbors, not to mention his Heavenly Father who he knows cares about him so much. It is our hope to get him home soon and to enjoy this time of year with as much health as we can provide for him.