I apologize for not keeping the blog updated in the last few weeks...so much has happened - or actually NOT happened, since the last update that I am not sure where to begin.
Doug has been in a catch 22 sort of situation. St. Peter's Hospital turned Doug down for a heart valve repair, and actually told us that there was no place in the country that would do it. Thank goodness for the internet. Both Jean and I got on the net and found 2 hospitals that would do such a repair. Fortunately, Jean convinced the doctors in Albany to transfer Doug to Cleveland Heart Center in Ohio. He has been there a week now.
It has been a bit of a roller coaster since then - the Cleveland Cardiac Unit is hesitant to do a heart procedure, yet without it Doug will not qualify for a liver transplant.
At first it was suggested that Doug return to Albany and receive hospice care here at my home. So I began preparing a room here for him. And attempted to get my mom ready for Doug's living here with us. As many of you know, our mom has Alzheimer's disease and so it isn't easy to help her understand changes. I do believe that she understands how sick Doug is....but that is about all she may or may not understand. I thought I had gotten used to my mom's condition, that I had accepted she wasn't really herself any longer - but I find it extremely difficult lately, I miss her and wish I could talk to her about Doug and what is going on. Then again, what mother would want to know how sick their child is - so I suppose for her it is a blessing and I should be grateful for that.
Once the decision for hospice was made, we again went on a roller coaster ride. The heart surgeons in Cleveland decided that they just might do the surgery after all. The liver transplant team at the Center would wait and see how Doug came through the first surgery and then allow him to start qualifying for a liver transplant. As of this writing the situation has been a daily wait, to see who would agree to do what - very frustrating.
In the meantime, Jean and Doug are in Cleveland and I am here with mom and working on keeping up with my business client's orders. It has been difficult to continue working, when my heart wants to be in Cleveland. I do not know what our family would have done without Jean's steadfast dedication to Doug's care, and I wonder what other families do when such a thing happens.
Surely the health care system is not set up to help a family when a major medical condition threatens to take a life. Lets face it, without Jean what would I have done? Quit work, place my mom in one of those sub-standard nursing facilites and then travel with Doug? There would have been no other option. Yet what sort of option is that - I would have lost the house and then what...we are all homeless. It just doesn't make sense.
OK I am rambling here - but to be honest I miss my brother, I want to be with him and yet I know I can't be there....I want him to be home with me, yet I know that if that happens that may mean that there is no hope of any procedure.
So we all wait. 3 days ago our option was hospice care at home, 2 days ago they said they may do the heart procedure, yesterday the doctors said they would meet to decide, and as of this am - around 4:30 am to be exact - I am still waiting in NY, Jean is sleeping on hospital chairs in Cleveland, and Doug waits for a team to decide if he should have a shot at life...this is where I wish I had my brother's talent to write. To share what has been happening with such limited ability is frustrating - and without Doug's editorial skills to help me I am at a bit of a loss on how to get across to his friends just what the heck is going on.
I guess the best way to describe the last week or two is - we are in a holding pattern, between hope and a tad bit of despair, if that makes any sense at all!
I am not sure where Doug will be in in the next few days - so if you would like to send him a note you can mail it to me and I will make sure he gets them - his birthday is on January 29th. Feel free to email me at denise@glassbeadz.com for the address. Please put DOUG in the subject line, as my business is web based and I receive quite a bit of email, and I don't want Doug's friends to get lost in the shuffle.
