“Eileen is progressing. Progress will be slow.” This is what the doctors are telling Andy.
Her “progressing” has been that she is able to move her fingers to squeeze Andy’s hand. Her “progressing” is that she is breathing better on her own.
The nurses are taking such very good care of her. They understand her needs. Andy is pleased with the facility. But unless you have seen Eileen yourself, it is difficult to describe her current situation.
It has been 55 days since her world completely fell apart.
One of the things you must realize is how serious her condition still is. Officially, Kindred had her condition listed as critical. To see her lying in the bed (and she does welcome visitors now), is shocking, especially if it happens to be your first visit. I haven’t seen improvement in her looks or her ability to move even though the doctors do tell us that she is making progress, albeit ever so small. Baby steps they have told us. One day at a time. But they also said this “could go either way.“ Whatever that means…
Let me describe Eileen as I saw her a week ago on Saturday.
First of all you notice the swelling in her face. This is because of the prednisone. At one point she was given a 3 day dose of 500 mg to “shock” her vasculitis into remission. She is now down to 10 mg per day. The doctors would like to reduce it further but she needs it to control the pain from the rheumatoid arthritis and the vasculitis. So although she has lost weight, her body is swollen.
Her skin on her arms and legs was almost a solid mass of brown scabs caused by the prednisone breaking down the skin. She is so fragile she tears. I noticed blood on her bed pad and told the nurse who then added another patch to her skin. Not a pretty picture. Andy said he saw improvement in this condition during this week.
Because of the chemo drugs she was on in an attempt to put the vasculitis into remission, her hair is falling out.
The next thing you notice is the trach attached to her throat. Can you imagine my horror that when trying to trim her nails I accidentally pulled the tube out of the trach in her neck. I quickly put it back in and she indicated to me she was fine which the nurse then confirmed. Thank goodness…
The oxygen makes it easier for her so she doesn’t have to work so hard to breathe. She can rest and sleep better. Over the course of this first month at Kindred it is their goal to wean her off the respirator. They want to switch her to a smaller trach. I don’t know the long term prognosis as to when the trach can be totally removed.
When she is off the tube to her trach and the button is in place, she can whisper. Her words were intelligible to me but I had to have my ear to her lips in order to hear her whispered words. Could be my own loss of hearing and the fact that I don’t read lips very well. I was pleasantly surprised how much her whisper sounded just like her. The first thing she wanted me to do was scratch her left shoulder! The therapist wants us to NOT lean over to hear her whisper. She must learn to speak louder. This is part of her speech therapy.
Swallowing is an issue. She cannot swallow. She can have nothing by mouth. No water. No ice chips. It could cause her to aspirate. She needs to be suctioned periodically. She is tellng people that she is allowed ice and water. This is not true. She also wants steak! Someday…
Then there are the tubes in her abdomen: the colostomy, the ileostomy, the feeding tube and the PICC line.
She has no strength. It is a complete and utter exhaustion. Her muscles have atrophied. She also has neuropathy. She asked Andy to bring her eyeglasses which he did last Saturday morning. But she was sleeping and didn’t know he had brought them. I put her glasses on her face that afternoon. This was the first time she put her glasses on since her seizures on July 6. I hadn’t even stopped to think she had not been able to see all of this time. How terrible. I know how blind I am without my glasses on. I wouldn’t even be able to tell you who was standing at the foot of my bed. When they became uncomfortable on her nose, she wasn’t even able to lift her arm to adjust them. I had to do it for her after she whispered to me what the problem was.
Can you imagine the helplessness and frustration she is going through?
The frustration and despair is in her eyes.
Eileen is eager to work with the therapists to overcome all that has happened to her. Eileen is strong. Her attitude is willing. She was a pillar of strength to help Pat (and me) through the trauma of his stroke. Now she is being called upon to be strong for herself. We can be strong for her. Her support system is amazing. But she is the one who must work through all of what has happened to her body to become mobile once again.
She wants to hold her grandbabies. I know that is what she wants to do. Because she told me.
Donna