lgelb

Hi Laurie;
I sent you an email, I am in dire need of help.

Hey Laurie;
Snicker, you posted your reply on your message board. That was so Paulette of you. It is not like you have anything to keep your mind distracted or anything. Yes you can email me at [email protected], and I would love to hear from you.
I also wanted to tell you that you never cease to impress both Tim & I with you knowledgable and helpful posts. You are amazing, and I hope you know it. So often people's caring actions are taken for granted, and I know that in the past I have been guilty of it. But I am trying to give people credit when it is due. So thank you.
Paulette

Hi, Paulette -- the msg was sent before Larry's decline, so it was a moot point by then. Re the 4/20 breaths, I would try dropping the backup " (target") rate as low as it will go (i. e. 0 if it will do that in iVAPS mode, or if not, try the S mode) , esp. when he is awake, and see if that helps. My guess is the big breaths are backup rate breaths and those will be at different settings. For the bed, sure you as an RN know this, but you want a bed that tilts as well as changes foot/head/overall height.
Might be easier to do this via e-mail -- is there a better addy to use?

Just received your message sent Nov. 5th by Gmail, wish I had received it when we were there, as we definitely would have stopped in to visit. How is Larry doing? We have been enjoying being back home, and just doing everyday things. Tim seems to be getting increasingly SOB, usually using his VPAP in the afternoon and then again in the evening. Looking into getting a hospital bed, so that positioning is easier. We will probably be returning to Seattle in a month, will see you then if it works out for you.

I too enjoyed our conversation, and it gave me great piece of mind. The next day, Frank the head RT came in and agreed to teach me how to get into the VPAP machine, but interestingly, after talking to you I was able to show him a few things. I have changed the sensitivity and triggering on Tim's VPAP and he said it was better. He says that now it gives him 4 big breaths, then tapers off to normal breathing for about 20 breaths, and then back to the 4 big (mega) breaths. He says that the 4 bigs ones are almost too much.
We are finally back home, so once I get all unpacked and get groceries, I will down load the program from sleepy heads.

Thanks for giving me the info to get into his VPAP. I just put Tim on his nose pillows last night, as I wasn't there all night to watch him while on full face mask. He would not be able to take off the mask if there was a problem. I hope that Larry is feeling better today.

Paulette

Tim is 6'3" and 100 Kg. His at rest respiratory rate is 20-24, faster as he tires. So here is what it said.

Mode IVAPS Ht 76" Target Pt Rate 16 Target Va 6 L/min MV 7.4 L/min Vt 465ml Vt/Kg 5.6ml/Kg

Climate Ctrl Auto
Sleep Quality Usage
Confirm Stop Off
Smart Set On
Therapy LED Off
Access Full

Sleep report
Insp. Pressure 17.4 Exp. Pressure 4.0
Target Pt Rate 16 Target Va 6.0
EPAP 4.0 Min PS 4.0
Max PS 20.0 SW SX474- 1102
BID SX525-0400 VID 18
RID 100 AID SX535- 0201
HID SX496- 0212

So I'm up trying to find the users manual for Tim's VPAP. It is a S9 VPAP ST-A. I will get the settings in the morning when I see Tim. We have tried several different masks, and he seems to only tolerate the nose pillows. But because he tends to sleep with his mouth open he has to wear a chin strap, and then he still leaks air through his teeth. I'm sorry that your husband has been having such a difficult time, I know how exhausting and troubling that can be. I'm sorry but I have forgotten your first name, is it Laurie?

Would love to get together with you. We can come to your place, as we have our vehicle here. Getting very frustrated with the lack of knowledge on how to set up and run Tim's VPAP. It seems to be cycling some weird way. He says that it allows him to take 3 normal breaths, then the next 3 are delayed slightly. It doesn't seem to do it all the time, and the RT that supposedly knows this machine, is rarely there, and gets a glazed look on his face when we try to explain what it is doing. I do not want to leave Seattle until it is all worked out, but at the rate they are going, we should buy a house.

Thanks,
We did get a humidifier for his S9, and he said it made a world of difference. I spend most of my time with Tim, so if you could call his cell phone or text your number to us we could call you. Will be here until at least Thursday next week. Evening work fine for us, as the days are always full of doctor referrals.
Paulette

Thank you for replying so quickly. I am embarrassed to admit that I know very little about his BiPap setting, as ALS was not on the radar when he got it. Tim saw our hospitals respiratory tech last week while I was at work, and he changed the settings a bit to 14/8 if that means anything to you. It is a ResMed S9, without a humidifier. Tim does not have any problems with excess secretion, or swallowing. I think one of the problems is that his abdomen has become quite large (I am succeeding in keeping his weight on) and he has no trunk strength so he is slouched quite a bit. He is most SOB when leaning forward to brush his teeth, or reposition in his chair.
We would love to meet with you, as I have not actually met anyone else in person with this struggle.

Hello, I am caring for my husband with ALS, and noted that you live in Seattle. I bring Tim to the Seattle VA hospital often. Seattle is a beautiful city, have been to the botanical gardens a couple of times. You obviously have some knowledge about vent, bipap, NIV etc. Tim's breathing has been decreasing inspire of having no difficulty speaking or swallowing. He has been on bipap for the last year at night, but he is now using accessory muscles to breath during the day. We are heading to Seattle Sunday night for pulmonary testing, and to find out some options for him. Any suggestions?

Hi, just got your friend request. Don't get on here much anymore.

Laurie... Thank you for your kind words. Over the years I've realized there are and will be certain forum members that I just probably wouldn't like very much even in the best of circumstances if I met them in real life and.. well, I guess that's ok. But it really felt good to have someone care enough to back up what I'd said! So again.. thank you.

Katie

lgelb, I see that you have been a member for quite some time and not had a friend request or a Welcome to the forum on your wall. I think that sometimes we get so wrapped up in our own lives that we often forget to hug our new members and welcome them. Consider yourself well hugged this morning! I sent you a friend request! You gave such great advice on the BiPAP thread. Thank you. How are you and your hubby doing today? hugs, Kay Marie