Update on Hubby

[Barbie]

Things have gotten back to normal for us around here. DH is back in his routine and is feeling good again. His HR is a little high but not like it was, and his fatigue and weakness is "normal" instead of extreme. He is back on his anti depressants and that has lifted his mood and made everything better. breathing took a hit over the last couple of weeks, but he is handling it well. He is trying very hard to drink more liquids every day and eat more as well. I have the CNA writing everything down and I am charting his calories and water in a weight loss program. So far the most calories he took in was yesterday and it was only 1400 but better than the 1100 on Saturday!

speaking of CNA, our new CNA started on Monday and today was her first day along with him. she did very good and I think she is a good fit and will work out. Whew!

Our new doctor is working out also. My husband likes him very much and he is easy to see and I feel that he really cares so that is a relief for us.

Hubby decided that he does not want a peg tube...I don't really know why but I think he did not like the idea of whole thing. he has heard all the arguments for it and it was his choice. Honestly--I am not sure if he would be a candidate anyway and that would be horrible if he decided he wanted it and was told it was too dangerous for him.

The good news is that he has decided for the bipap and we got a referral to a local pulmo . hopefully it will not take too long.

so that is our update--considering how I was feeling a week ago today it is pretty good!

 

[tinyandme]

Yay! So happy your both doing well, rest up! Xo

 

[Grumpy'sWife]

I am so glad your new CNA is working out. Hopefully that eases your mind since you have to be away.
Grumpy gets his peg tube tomorrow, but honestly I think he did it more for me than for him.
He got his bipap last night and although it is going to take some getting used to he was able to tolerate it for almost four hours the first time. Hopefully your hubby will be as lucky!

 

[Barbie]

the docs brought one in while he was in hospital, and the first time he slept for 2 hours with it. he woke up and could not tolerate it. in the morning, he was able to wear it for a half hour on and then a half hour off--a couple of times. he complained of dry sinuses. I told the tech that it would be best to start it in the day instead of nite so he could adjust to it but they just wanted to disagree with me. I also asked about a humidifier and they insisted that bipaps do not have humidifiers. we are going thru a different pulmo obviously.

 

[SMP51]

whew, glad things are back to "normal", so to speak

 

[affected]

What a difference to last week Barbie. Thanks for updating us.

That peg decision is a hard one, but he has had a lot of time to come to his decision.

Hope you are catching up on some sleep now!

New CNA working out so far, another huge win!

 

[AKjo]

Hmmm, Bipaps DO have humidifiers. At least Gary's Philips Respironics does, and it sure increases the comfort level. Sounds like you're stuck with a stubborn tech. I think I would pretend I hadn't asked before, and ask again. Be shocked when they tell you that they have already answered before. So happy to hear that both of you are on the upswing!

 

[gooseberry]

Our phillips bipap and trilogy both have humidifiers. Very importabt for comfort and compliance

 

[Schmidhogan]

You can buy a humidifier with heated tube fron second wind for $70. Alex

 

[Barbie]

have an appt. with a new pulmo next Thursday.

 

[Santa joe]

Glad things are better this week. Thinking of you my friend.


Debbie

 

[DreamsEnd]

Really, really glad things are better for you Barbie! I hope you're getting some sleep. The PEG is a difficult decision. Don't know what my guy will choose & when. I'm/we are learning from you so keep on posting.

Sherry

 

[andycap]

My husband has decided against feeding tube ,he googled it and decided it wasn't for him and of course I wish he would get it but this is his journey.It just breaks my heart.

 

[JimInVA]

Barbie,

Our ResMed S9 BiPAP had both a humidifier and a heated hose (to prevent condensation). We just returned that (was an insurance company rental) for the Trilogy (also a rental) which also came with an external humidifier. I sure hope you find someone with some useful knowledge to work with...

Jim

 

[JimInVA]

andycap,

My PALS was of the same initial determination... not to get a PEG. It wasn't until she understood (1) that it gave her more options and took none away, (2) was not going to be an increased burden on me... and, in fact, could ease some burdens, (3) that she could still eat or not eat as she chose and (4) it could improve quality of life while not needlessly extending it. I helped provide information from the many who have shared here and whom have already made this choice (for and against). My attitude was, "you will be the one to make that choice... I just want to make sure you have good information and knowledge to base your decision upon." She has made her choice. On Monday morning, she gets her PEG. And you are absolutely right to support your PALS choice...

Jim