lovedbygoldens
Active member
- Joined
- Dec 9, 2011
- Messages
- 51
- Reason
- Loved one DX
- Diagnosis
- 03/2011
- Country
- US
- State
- MO
- City
- California
Just thought I would share the update from Mom's ALS Clinic visit yesterday.
Background:
Diagnosed and confirmed (FVC 77%): 03/06/2011
Bi-Pap and (all the meds and vitamins): 03/2011
PEG placed: 06/2011
Full time in Power Chair: Fall 2011
Full PEG feed: 12/2011
Hospice and morphine & fentinol and all sorts of other goodies: 12/2011
Bladder Catheter and PEG cleanup (granuloma's removed): 03/2012
Yesterday her FVC was 21% of predictive (down from 34% in December), pulse 72, O2 saturation 92 and CO2 was 43. She is on the bi-pap at least 20 hours a day with oxygen. Her hands, arms, and legs are weaker. She is also showing signs of tongue atrophy as well as discoloration/staining since she is still drinking coffee orally with a straw and eating her meds crushed in applesause/yogurt. She gets 5 cans plus lots of supplements through her tube and will be adding coconut oil (2tbsp) per day and can replace a can if she is too full and uncomfortable.
We (Mom, her husband and primary CAL, my sister and myself) met with her neuro, speech, social worker, dietician, respitory, and the ALSA coordinator. She enjoyed her speech session the best because she got more toys/gadgets to play with and use. They also help in filling out paperwork to get a head mouse for her computer/tablet and dynavox speech device (from the loaner closet).
The visit made for a long day and mom was pretty exhausted afterwards but she did great and was in much better spirits after this visit compared to the one in early February. Next visit is in early May.
Questions, feedback, thoughts and recommendations are all welcome!
{{{Hugs}}} to all!
V.
Background:
Diagnosed and confirmed (FVC 77%): 03/06/2011
Bi-Pap and (all the meds and vitamins): 03/2011
PEG placed: 06/2011
Full time in Power Chair: Fall 2011
Full PEG feed: 12/2011
Hospice and morphine & fentinol and all sorts of other goodies: 12/2011
Bladder Catheter and PEG cleanup (granuloma's removed): 03/2012
Yesterday her FVC was 21% of predictive (down from 34% in December), pulse 72, O2 saturation 92 and CO2 was 43. She is on the bi-pap at least 20 hours a day with oxygen. Her hands, arms, and legs are weaker. She is also showing signs of tongue atrophy as well as discoloration/staining since she is still drinking coffee orally with a straw and eating her meds crushed in applesause/yogurt. She gets 5 cans plus lots of supplements through her tube and will be adding coconut oil (2tbsp) per day and can replace a can if she is too full and uncomfortable.
We (Mom, her husband and primary CAL, my sister and myself) met with her neuro, speech, social worker, dietician, respitory, and the ALSA coordinator. She enjoyed her speech session the best because she got more toys/gadgets to play with and use. They also help in filling out paperwork to get a head mouse for her computer/tablet and dynavox speech device (from the loaner closet).
The visit made for a long day and mom was pretty exhausted afterwards but she did great and was in much better spirits after this visit compared to the one in early February. Next visit is in early May.
Questions, feedback, thoughts and recommendations are all welcome!
{{{Hugs}}} to all!
V.