My dad contracted a chest infection and was on Meropenem anti-biotic (1gm via IV, 3 times a day) for 7 days - during that time he had a bout of bad coughing again and again after the IV injections ended - 2 days ago it got so bad I wanted to rush him to ER again.. thankfully it got better yesterday.. he has a light fever (99-100F) and I give him Paracetamol via PEG tube when that happens- he is also taking a cough med and a sputum thinner...
He is very down, hardly wakes up (he takes his normal neuro meds as usual and they have sedatives in them) and almost completely refuses to eat or drink more than a bite or a teaspoonful of water... I am not sure what to expect now.... we give him chicken broth with Beneprotein/Resource-Optimum twice a day - we are hoping/wishing for an improvement, at least to his previous baseline when he could eat and drink enough sufficiently...
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sammy90210
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Things can change so quickly I've stopped wondering what to expect. One day I think C is nearing the end and the next he is back to how he was. I just take every day as it comes, knowing one day will be his last, or mine, no one knows when our time will come, but not dwelling on what is to be but focussing on now.
What neuro meds is he taking. Are they doing any good? The neurologist stopped C's meds a long time ago as he said they weren't doing any good. There was no immediate decline when he came off them. If they are making your dad drowsy I would see if he really needs them. It is the nature of PSP that those living with it will sleep more and more without meds.
As he has the PEG you know he won't be dehydrated or starve which will give you time to find out if there will be an improvement.
All you can do is make him comfortable and let him know you love him, talking to him normally whenever you can.
Sammy, I just read NannaB's post. I cannot add any more to it. she said exactly the truth. If he has a PEG tube, is he fed solely with this method? If not, he may not be getting enough calories. B at 180lbs...more like 160 lbs now (70-80kgs) , gets 5.5 cans of Jevity 1.5 (355 calories a can) 5.5x355=1952calories a day......Your dad may need a nutritionist to help the Dr. write a script for his nutritional needs.....he may perk up and fight off the infection a little more....and he should not have any more fever......you may want to see the dr for that too! Well I guess I did have some other stuff to say...But definitely one day at a time......
My wife has a PEG too and we give her an occasional bite of food (Hershey's kiss) and her nectar thick water. But when I suspect she's at her worst with swallowing, then we go NPO (nothing by mouth) and everything goes into the PEG. She's taking 4 cans of Jevity 1.5 per day and weighs around 120 pounds.
If you really want to ward off chest infections, then you pretty much have to go NPO and also stay clear of anyone with any kind of cold, virus, flu, etc. If I have a nurse or family member show up and I see them blowing their nose or sneezing or sound like they've got something going on, then I demand they put a mask on. Otherwise I will show them to the door.
The NPO thing is so hard. Harder on me and family than it is on Kim. As with most PSP patients, they don't show a lot of interest in anything, so really, Kim could care less if she had anything to eat. But she does get thirsty. Her pulmonary doctor said that if we gave her anything, then it's best to be only water. If you she gets the water into her lungs, it can be tolerated a lot better than other things, such a soda, alcohol, etc.
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