holdingouthope
Member
- Joined
- Oct 2, 2009
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- tx
- City
- Around the way
I hope some one is awake! I need someone to rationalize this with me. My father has been sick since June (first symptom) with rapid progression, and respiratory failure since oct through dec, where he only has movement of his hands/fingers mostly and his head side to side and a bit up and down. He's been on a ventilator since December. The doctors diagnosed him with atypical ALS since they didn't really believe it was ALS but since nothing they tried work, it just had to be. since it was so rapid they called it atypical. Also, they really felt it was viral but "there aren't enough tests for every virus" and then they thought MMN or MG but since IVIG, PE and cytoxan didn't work that was ruled out.
He has continued to deteriorate with the ventilator with MRSA and Acineobacter in the Trach and repeat bouts of pneumonia where this last one was pretty scary and we were touch and go the past few days... I begged the neurologist to try IVIG again as a last ditch resort and by the grace of god they agreed. Today was the last day (day 5 of 30mgs/day) and he's been breathing over about 5-10 breaths over the 10 set on the ventilator (A/C setting) since 7pm tonight. He hasn't breathed over the vent, ever, since I've seen him. I mean, a breath here and there but to be consistently breathing 20bpm is crazy!
I insisted to the nurse that "something is wrong" and that "we need a doctor" figuring he's having some sort of compensation mechanism happening and his body is breathing rapidly because something is wrong. But the nurse and tech said, that it just doesn't make sense because his settings are completely normal, he's just breathing over with his own breaths. And no one can tell me how or why!?! I mean, the nerves that breath for him have been dead! I mean, I believe in miracles; I've been begging and pleading and praying and praising and worshiping and crying, and laughing through this whole thing with god... but I have hoped, and had that crushed so many times in the past 6+ months to actually believe that the miracle was/is here was too much for my brain/heart/body.
I can't sleep; I keep calling the ICU to see if he's still breathing over and as of an hour ago he was at 16bpm and sleeping. A totally normal sleeping rate... I'm in shock and awe.
He has continued to deteriorate with the ventilator with MRSA and Acineobacter in the Trach and repeat bouts of pneumonia where this last one was pretty scary and we were touch and go the past few days... I begged the neurologist to try IVIG again as a last ditch resort and by the grace of god they agreed. Today was the last day (day 5 of 30mgs/day) and he's been breathing over about 5-10 breaths over the 10 set on the ventilator (A/C setting) since 7pm tonight. He hasn't breathed over the vent, ever, since I've seen him. I mean, a breath here and there but to be consistently breathing 20bpm is crazy!
I insisted to the nurse that "something is wrong" and that "we need a doctor" figuring he's having some sort of compensation mechanism happening and his body is breathing rapidly because something is wrong. But the nurse and tech said, that it just doesn't make sense because his settings are completely normal, he's just breathing over with his own breaths. And no one can tell me how or why!?! I mean, the nerves that breath for him have been dead! I mean, I believe in miracles; I've been begging and pleading and praying and praising and worshiping and crying, and laughing through this whole thing with god... but I have hoped, and had that crushed so many times in the past 6+ months to actually believe that the miracle was/is here was too much for my brain/heart/body.
I can't sleep; I keep calling the ICU to see if he's still breathing over and as of an hour ago he was at 16bpm and sleeping. A totally normal sleeping rate... I'm in shock and awe.