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scaredwifetx

Very helpful member
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Joined
Jul 25, 2015
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1,606
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Steve is finally sleeping for the first time today. The procedure went well with a couple of minor issues. While in surgery the doctor found some small spots on his stomach so took a biopsy. When he got into recovery he was cough in up a lot of fluid. Although I guess that could be good.

The decided he needed to stay overnight. His blood pressure keeps going up even though he is very calm. At or time it was 152 over 102. That's high for him. He just had his first feed and it went well.

The staff have all been very nice but not its time for my frustrations. No one who has cared for him other than the doctor has any knowledge of ALS. The nurses tried to give him oxygen and did not even know what the Trilogy is and that includes the respiratory Nurse. One nurse asked him if he was a stroke victim and he was in her care. I was extremely nervous about even leaving for the bathroom.

I know ALS is rare but it would be helpful if those who are directly involved and taking care of these patients would do a little crash course or look it up. No harm done but I would never leave him alone. I hope he is well enough to go home tomorrow.

I want to thank everyone for their thoughts and or prayers. Another chapter has been completed and we are both learning to be as positive as possible when faced with challenges. Just as I was typing this they took his vitals and his temp is 101. Here comes another challenge.
 
I'm right there with you and holding your hand tight xxx

I know the terrifying frustrations of leaving our PALS for a moment with the 'health professionals' who seem able to do something fatal to them in a heartbeat! I'm sure I would always have been more willing to leave Chris with any friend if they popped in (they never did but that's another story), who knew nothing of anything, than with a health professional who would attempt to do something stupid!

I hope fervently the temperature just comes down again quickly and is nothing to worry about. hugs sister in pain xxxx
 
Well it's morning and the sun is shining. Steve's temp has dropped, he tolerated a couple of feeds and has had fluids. We hope he will get to go home today so we both can get some rest.
 
I so hope you all get to go home today. How is his bp? I'm surprised they did a feed so quickly? Sending hugs and prayers your way!
 
Just to let you to let you know that I totally understand how you feel. I just " discharged " my husband two days early from the hospital Wednesday after nine days for that very reason.....this post would be too long if I listed all the wrong care or lack of care that I observed. Friends always say " you must be getting some of the rest you need while he is the hospital" when in fact it's more exhausting and stressful being in hyper alert and fighting constantly for what he needs. Hope the temp is something treatable at home and Steve recovers quickly.
 
That is the irony of ALS, Deb, and I'm sorry you had to experience it again. The health care system is in no way equipped to deal. Hope Steve's inflammation is reduced now.

Best,
Laurie
 
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Thanks everyone. He is going to be able to go home later today. BP is better, temp is better and we ate both ready to leave so we can get some rest.
 
Good news Deb!
 
so glad to hear it!
 
So glad things are getting better and you can get him home.
Best wishes
Wendy xx
 
Oh Deb I completely know what you mean about the "health care professionals". Our hospice nurses didn't know a ton about it either and I felt like I had no guidance. I had to make sure all the details were being taken care of. Actually the only advice I really trusted were from people on this forum. :)

Glad he's doing better and can go home.
 
Luckily the day steve had his peg placed we got a great nurse. Her brother had als so she knew how and what to do. The other nurses not so much.
 
Hello folks, I had my tube put in about a year ago and the hospital and ALS Canada has been one hundred percent, they seem to know exactly what they are doing. The day of my tube placement I went in the hospital at eight AM and was home by two PM

and about one hour later there was an ALS nurse at my home to show us how to use the tube. The next four days there was a nurse here every morning to make sure we were using the tube correctly ( the tube is very easy to use I think that was just for my piece of mind ) and to show us how to clean the tube and how to shower with it. I had my appointment with the neurologist yesterday and he said my tube would be good for a least another year, glad to hear that. I find our health service here and ALS Canada to be very aggressive to help in any way, most anything I need is a phone call or a text away. I can not praise then enough.
 
Deb how are you and Steve doing?
 
Steve is home and doing well. He is taking Tramadol for the pain and is up watching TV. Temp is down and he had breakfast this morning. We are not using the peg right now except to flush it. He has been a trooper as usual. I got five hours of sleep last night which is good for me. He is much happier at home and so am I. I had to sit for two days in a very uncomfortable chair.

Thanks for checking everyone.
 
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