1-27-10

Today is my first go at Blogging. Thank You Wendy for creating this blog, for people to go to to check in on things for Dave, for us to voice our thoughts about Dave, as well as our personal feelings about Dave, and for others to learn about Daves Condition. Its is very comforting to know Dave has another family besides ours who loves and cares for him just as much as we do.

Our brother Dave has been sick since the end of October. It took a great deal of time with many specialists to come up with final diagnosis of Bickerstaff’s Brainstem Encephalitis (BBE). This was found after trips to St. Luke’s, Lehigh Valley Cedar Crest and Johns Hopkins. Dave is one of five siblings, Bob, Rick, Hope, Amy then Dave. I have always believed that each one of us brings something to our family. Bob is our level head. He keeps us on the right page and dealing with the item at hand. Rick is our analytical one. He weighs good verses bad and what’s the BEST choice for all. As much as I would like to be the one who does this, Hope holds the power of finding out everything there is to know about, anything that is being thrown our way. My strength is being there, as a caregiver. I will be the one who will without a doubt be there for what ever you need. Dave's strength was always having the ability to balance out the five of us. He gets along with everyone and has the ability to not look at the negative but can focus ahead on the positive and that is why this has been so hard. It is difficult to motivate the usually "upbeat" one while he is fighting this illness, he can’t always comprehend what it is that is happening to him right now.

Yesterday morning, while visiting Dave, I witnessed Sharon making another tough decision for Dave-that none of us ever thought she would need to make. Today Dave is scheduled to have a Tracheotomy done. A tracheostomy is a surgically created opening in the neck leading directly to the trachea (the breathing tube). It is maintained open with a hollow tube. This way Dave can have the secretions/fluids that have built up in his lungs taken out-as his condition has left him too weak to remove it on his own. With this procedure Dave will have the ability to talk and breathe on his own, while healing. Another positive note with a trach is that one can also eat food.

With that being said, each day continues to be a struggle for Dave. Sharon continues to be there for him every day and, my brothers, sister and I will continue to be there for the both of them, along with Sharon’s family. Sharon is a Huge part of Daves life, that makes her a Huge part of our family and our lives too. It’s one day at a time for all of us. Each day brings us all new challenges that we all need to deal with on a fellow sibling level, a loving parental level, and also a soul-mate level. Both families are each others strength as well as Dave’s and Sharon’s.

Please know that even though each and everyday brings all of us new issues to deal with, it’s the hardest on Dave. Each morning I look into his eyes and I can see he’s scared, confused, angry, sick, and lost. His entire life he has done his own thing. He has let no one get him down and he has remained control of things that are important to him. Now he has to rely on other people 100% to care for his daily needs- bathing, feeding, things you and I take for granted. He also is at the mercy of a disorder that is so rare most of the doctors working with him have never even seen it before, let alone dealt with it. Everyday day Dave has to put faith in the medical field that they are doing their best to get him well again.

So as you read this, please take a moment and say a prayer .It means a lot to all of us the positive words all have been sending Dave’s way. It helps keep everyone going. I smile when I think of Sharon saying to Dave "Ok Dave, here’s the list!" and then she gives him all the well wishes she received for him. Believe me he is listening too! Positive thoughts and prayers will help Dave find strength and to keep on fighting.