Status
Not open for further replies.
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.
 
i WANT TO laugh and cry with you, ask questions witgh you. Cannot think of a sensible answer but so so happy for you and long may it continue
Much much love
 
I've been googling as I often do in the middle of the night searching for answers but I long rule dout GBS since it wasn't fast enough BUT I have often said to people (when I try to explain how rapid this is to those who don't get it) that "it's like GBS but a slower but too fast to be ALS". I had one last hope that it was some virus and that "once it's done running it's course he will begin to recover" and that was the last hope I had. In the last few days, he's been so sickly that I was just asking god to take him already because the up and down and seeing him suffer was too much for me. The desire to have him with me longer was gone and now it was just about peace for him and us all.

Now this! Craziness... We are all in shock here and can't sleep. I'm fighting back the temptation to call the nurses station again; they must think Im nuts! So here I am searching and I decided to go back to the GBS idea (Guillain-Barré syndrome). The various phases of the syndrome. so maybe it was an atypical GBS?! And that he's just responding now to IVIG because his body was/is done making antibodies?!

THe only other thing they are doing differently is the IV ABX, they started zyvox and tygercyline today for the acineobacter.

I'm totally at a lose and fully prepared that I might never be able to rationalize this in my mind and being a nurse, that is very hard to do BUT through this all I knew god was in the midst; and even though I have felt forsaken at times; I knew that he was going to work everything out for HIS good not mine. And so, as he's a god of mystery at times; dad getting better without knowing what it was or how it went will do just fine.
 
Last edited by a moderator:
Just saw your thread...how's your dad doing?
 
I hope you can get some sleep soon. At least your not alone since none of us are sleeping either :) They say to do something different after trying to sleep for 30 minutes and failing. Get up, walk around, have a drink of water or milk. Read the newspaper...
 
Status
Not open for further replies.
Back
Top