The Disease Continues

Lately, I have been experiencing increased times of feeling completely exhausted and no matter what I do I fall asleep.  I’ve also have been experiencing some memory loss and I seem to have trouble following explanations.  Often my brothers and I will email each other discussing things we've read or heard, and the other day I had to tell my younger brother that I couldn't follow nor could I understand what he was telling me.  When I told my Neurologist this, she ordered a MRI of the brain.  When that came back normal, she sent me to my Pulmonologist to have some CO2 tests done.

So this past Friday, April 19, after lunch, a friend brought me to the hospital.  I was scheduled to have a 24 to 48 hour test to see if I was retaining CO2.  The test showed that my CO2 level was elevated.  On Saturday Dr. L. made some changes to my ventilator settings which actually seem to make things worse.  Then on Sunday morning Dr. L, tried a number of different changes to the ventilator setting.

Here is what P. sent to our family last night.  I think she has explained what the Doctor determined far better than I ever could.

The tests this weekend showed that I have respiratory acidosis.  Because I do not breath deep enough, my body is retaining CO2 leading to a high blood Ph.  For some reason my kidneys are not compensating for it like they should.  Dr. L. tried decreasing my volume and increasing my breaths per minute (BPM) but I was unable to tolerate that.  She increased the volume again and decreased the BPM to 18 from 20 (I went in at 14).  That still wasn't solving the problem.  She increased the volume again back to 700 but then I was having high pressure and she was afraid his lungs would explode.  I came home at 16 BPM and 700 pressure, a slight increase but it really needs to be adjusted further to bring his CO2 levels in line with where they should be.  She has the results faxed to my doctor and Dr. L.’s partner Dr. S. who may have the company who supplies my ventilator asking them to come to my home.  If they come maybe they will be able to come up with ventilator settings that I can tolerate and which bring my CO2 down.  Sometimes it is a matter of adjusting to the changes.

Respiratory acidosis can be the result of my pain killers as well as not being able to breathe deeply enough to clear out all the Co2.  However in the end the doctor indicated that basically, this may be a progression of my disease and there may not be much they can do about it.

The Restaurant Came Here

Today is my wife P. birthday.  This being one of those special birthday’s I wanted to take her to a nice restaurant.  Only my Spinalcerebellar Ataxia Disease has progressed to the point where I no longer have the strength and/or stamina to go out to a restaurant.  After discussing the idea, I decided to bring the restaurant to us at home.

Next I contacted all of the children asking them to help me make this a wonderful birthday meal for their mother.  Our second son J. agreed that he and his fiancée J. would order the food from the restaurant and pick it up and bring here to the house.  I asked our youngest, our daughter K. to be in charge of things here at the house which she agreed to do for me.  She also went birthday card shopping and bought a wonderful card I could give P my wife.

However, her husband’s great grandmother passed away and the funeral was to be in the early afternoon the Saturday of the birthday meal.  There were some questions that she and her husband would be able to be here in time to do all that needed to be done around here, so I asked out oldest son C. if he would be in charge of the things here at the house.  Now with that part of the meal taken care of all that remained was the menu.

I suggested that our son J. to talk to his mother asking her what food she would like on her birthday meal.  So J. and P. worked on menu suggestions and then I came up with the meal of P.’s choice.  At least I thought that was what I was doing.  My original menu looked like this;

Salad:
1 - Large Maggiano's Salad:  
We need to decide if a small (feeds 8) salad would be enough or if we need a large (feeds 16) salad.

Main meal: (All Small feeds 8):
Chicken & Spinach Manicotti:  
Our Famous Rigatoni "D":         
Chicken Saltimbocca:                 
Two sides:                                    

Dessert:

Tres Leches Cake: Jonathan would make.                

Apple Crostada: From the restaurant

However, when J. saw my menu, he told me that what the restaurant considered serving size and what our family considered a serving size were very different.  He said I was ordering way too much food.  So after talking to him the final menu was:

Salad:
Salad:  J. and his fiancée would make a salad.

Main meal: (All Small feeds 8):
Our Famous Rigatoni "D":         
Chicken Saltimbocca:                 
Asparagus: C. would buy locally and grill on our grill.                                    

Dessert:

Tres Leches Cake: J. would make this.                

Apple Crostada: From the restaurant.

With this smaller menu, the portion sizes were more to the size we would be able to enjoy and not feel like we would have to eat and eat until we all would be uncomfortable.  However, we still have a refrigerator full of left over’s from the restaurant.  So this birthday meal will continue for a couple more days.

The one sad note was that earlier in the week our youngest son told us that both he and his wife were fighting the flu and weren’t certain that they would be able to come for the birthday celebration.  Then on Saturday April 13 our youngest son told us that they both were still fighting the flu and would not be able to come and celebrate with us.  We were sorry they couldn’t come, but understand that they wouldn’t want to infect us with the flu.