Update on Louis - November 30, 2007

Today was Louie's first appointment with his new Internal Medicine primary doctor (Dr. Wang). She was a wonderful doctor. I didn't sleep all night last night knowing how important this appointment was and so anxious to get some assistance as Louie has declined badly this week, especially in the last two days.

He was so wobbly on his feet this morning that I was afraid he would fall on the way into the doctor's office. Once we got there, I asked for a wheelchair. I asked the doctor about his terrible cough, and we talked about how he has gotten so much worse this week. She is putting in an order for speech and swallowing therapy. His cough is from being unable to swallow correctly sometimes (which a person doesn't even realize) and so some liquids and bits of food are being inhaled into his lungs. The therapist will help him with which food and beverages are best to have, and which ones to avoid, etc. She will also work with him on speaking as his words are slurred at times and he has trouble getting his words out at times.

I asked her if we could get a "disabled" card for the mirror of the car for us to park in the "handicapped" parking spots. Also, she gave us a prescription to get a wheelchair at a health store.

We talked a lot about getting hospice started here at home. Things are to the point where Louie and I both need the help of this beneficial program. She wanted to talk to his Neurologist this afternoon and then put in the order for the Hospice agency to contact us on Monday to get things started. Well, Dr. Englander was not in today, so his nurse was going to ask one of his partners to call Louie's primary doctor to coordinate getting this going. His nurse was going to call me back and let me know - well, it turns out that Dr. Englander's partner said to wait and have Dr. Englander himself talk to Louie's doctor here (Dr.Wang), but Dr. Englander won't even be back in the office until Tuesday. I AM SOOOOO MAD!!!! We needed to get this started right away!! Now it's going to take longer to get this program started.

I called my insurance company today and got a Case Worker who is going to be working with me very closely. She is an RN and was SO nice. She will be calling me on Monday and we had planned on her talking to the Hospice people who would have been starting. So when she calls on Monday, now I have to tell her about the "delay" that occurred today. She told me to call her ANYTIME as often as I want to about anything and everything. Thank God we will have some support on a daily basis just a phone call away!!!

Louie is having bad pain in the back of his neck - I give him a pain pill for that, plus we use heat on it which helps some. He now has symptoms of uncoordination in his left hand that are just beginning - his right hand is not working at all. He is so fatigued most of the day, and it is just such an effort for him to do anything. This fast decline of his condition has shocked me and is too hard for me to see. I just want to wave a magic wand and make him all well!!!!! We hold each other and sob together. This is the hardest thing I have ever gone through in my whole life!!

I am determined to get him out of the house at least a couple times a week even if we just go for a ride. We can go to the mall and I'll get out the wheelchair and we'll just walk around to be near other people.

Our church meals kind of quit arriving, so my friend, Sandi, made some calls and got that all started up again. It is a huge help.

I will try to send more information once we get the hospice all set up. That just can't get here fast enough!!

Oh, I wanted to tell you that Leonard Wheeler called Louie two nights ago. He is going to come visit us - he lives in WA.

With a very heavy heart.....