A bad week

Today was my third visit this week and I am afraid it has not been a good week. He has lost some of the gains he made in previous weeks.

1. All through the week his breathing has been belabored occasionally requiring oxygen. A nurse commented that breathing difficulties are common in congestive heart failure patients.

2. He has a hard time clearing his throat and can't quite cough up the phlegm. On occasion it gets bad enough that a respiration therapist suctions it out. This also has made it harder for him to practice ice chip swallowing without chocking. He could only do four ice chips on Thursday and one today. It was very tiring to him. His speech is also impacted: He talked in a hoarse, slurred voice and it was hard to understand him.

3. His mental status has noticeably taken a turn for the worse: Today he could only make a brief weak eye contact with me. He did manage a half smile (not the happy wide smile he usually greets us with) when directed to Sophie and Olivia's presence but soon drifted away. Sophie commented that he was "stuck in a day dream". He had his eye brows furrowed most of the time during our visit today as if in pain. He also appeared anxious and said that he wanted to be taken back to the hospital where he was. I reminded him that he has been in the same hospital for two months. He said he might be dying and asked to see the doctor. We did ask for the doctor but I knew that it would be useless to have the on-call doctor visit. My previous experiences have taught me that the OCD's don't really do much unless the patient is facing an acute, imminent death. The nurse did figure out Bill was worried about his breathing and called in the respiration therapist. The respiration therapist gave Bill an oxygen mask but said this was just to reassure Bill, since his oxygen intake was excellent.

4. Scleroderma symptoms are worse in his toes and at least one toe is beginning to develop a purple-blackish lesion, similar to his fingers. His fingers, arms, toes, and feet are all ice cold. And when I touch his skin, it is as tight and hard as stone. The advance of sceroderma is relentless, it seems to me. Everytime I am there I put on heating pads on his feet and hands trying to warm them but I know it makes little difference. I can't help but remember the doctors telling us that there is not much more they can do to retard its progression. It is hard to take this pronouncement lying down: If they can put man on the moon why cant' they fix him?

When we left him around 8p, he had fallen asleep and finally his face no longer had signs of agony or pain. It seemed as if the oxygen mask did reassure him that he was getting enough oxygen and he could finally fall asleep.

I am trying to have a positive mindset. After all, Bill was on the mend incredulously from multiple organ failures and was on the verge of being discharged to a skilled nursing home. Maybe this week was a temporary setback. He may just manage to pull off another come-back yet...

Good night everyone!

Kris