Here is a formal update on Lindsey from Ms. Linda: I truly appreciate the many cards, prayers and calls. They have meant so much to Lindsey and me and have sustained me during the difficulties of the past eight months. Your concern has lead to many questions about how things are going and what the situation is with Lindsey. It’s hard to explain everything that’s going on to everyone, but I want everyone to have the full details of where we are with Lindsey and what I am facing. I really, really need your continued prayers for all the decisions I will have to make over the next few days and weeks. The situation is: · Lindsey is still in Specialty Hospital. There has been no change in Lindsey’s condition, and we still have no diagnosis. When we first came to Vanderbilt, the doctors said they did not think it was ALS, and them said they thought it was. Now after everything they have done, they are saying they don’t think it is ALS. · He can only stay in Specialty Hospital, where he has been for several months, for two more weeks. · The insurance company will pay for a second opinion at Mayo Clinic in Jacksonville, FL, but will not pay for the transportation to get him there. For this to happen two things are needed: o The neuromuscular physician has to prepare the paper work to get the second opinion, but there have been delays in getting it done. After telling me it will be done and waiting and waiting, I still don’t have it, and I don’t know why. o Due to his condition, a medical flight to Jacksonville is the only way he can be transported. The social worker here is checking with two organizations that provide “mercy” medical flights, but there will still be some costs our family will have to pay. · If he has to leave the hospital, the insurance will pay for 120 days of nursing home care. Due to the kind of care he needs, there are only three nursing homes in this general area the doctors will approve of his going to. They are in Nashville, Murfreesboro and Birmingham. That will make it real hard for me to continue to help take care of him like I have been doing, and it means that I will be on the road a lot going back and forth. · The doctors will not allow me to bring Lindsey home unless, before he leaves, there are two people trained to care for him. They have to be trained at the hospital and will have to stay through one full cycle of his care, which is 12 hours. Then there are all the preparations and care and money details that will have to be worked out. · At this time, Lindsey is completely dependent on the ventilator. While he was still able to express himself, he said that, if the doctors couldn’t find out what was wrong, he did not want to be kept alive. If the second opinion does not yield a diagnosis, I am faced with having to pull the plug on the ventilator and let him go. That’s hard to think about, but that’s what he wants. As I said everyone has so been supportive, kind and concerned, I wanted you to have the full details. I do feel overwhelmed at this point. Again, I ask for your continued prayers that get the paperwork needed for the second opinion very soon, that we get the “mercy” flight worked out and that I can make the right decisions. With much love and appreciation, Linda
Posted on: Sun, 19 Jan 2014 20:00:23 +0000
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