- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
I think I'm officially graduating from "we're making the most of it while we can" to "Yep, this really, really sucks".
It's been a tough few months, with five ER visits and two hospital stays, three cases of pneumonia and one of the flue. No Matt, when you stop choking on every bite or sip it does not mean things got better. It means your body is so used to aspirating that it no longer reacts.
This afternoon we checked into the Durham VA MICU, where Matt will be trached and vented tomorrow morning. I'm actually ready for it, since that's what he wants to do. I certainly didn't want to do it as an emergency measure. Hopefully we will be home in a couple of days, where we should have nursing help from the VA.
I must confess that I finally understand how it can take an hour or more to get a PALS tucked in for the night....and this is someone who spent the entire day in bed. Matt no longer has any functional use of his hands--they move a bit, but they won't do anything for him. Scratch, rub, change the channel, blow, pick, wipe.... If you've been there you know what I mean, and if you're not there yet it's too soon to worry about it.
I'm no longer friendly at 3am. In fact, it seems I'm downright ugly at 3am. I will schedule at least one overnight shift a week. Other shifts I think may start at 7am...so they can handle the morning routine and I can go back to bed in another room. In this we are extremely fortunate. I DO NOT function well without sleep. I mean 7 good hours of sleep. If I had to do this all by myself, well, I don't know how long either of us would survive. I think perhaps as my darling was burning up his muscles and strength and hastening his progression with all of our adventures and travels, I was also burning up my reserves.
So, a new phase of this adventure starts tomorrow. No more slipping out for pizza and leaving him alone for 20 minutes. Oh...never mind....he was told to stop eating by mouth two weeks ago, so it's time for me to start that diet I've been putting off until he stopped eating. I do believe I will research diet services that send prepared food. Who wants to cook? I'd better do it soon--I've had nachos for dinner three times in the past week. That's not going to help anything!
I've been in a pretty deep funk for the past six months or so. This decline has been hard to take. I just haven't been able to find anything positive to share, and I hate being a downer all the time. Now that the terrible event is upon us, well, I almost feel a sense of relief. How stupid does that sound? I can just see myself re-reading this a year from now and shaking my head at my foolishness. Or maybe it's just more self-preservation.
The RT here in the hospital just turned the alarms on the vent on. Crap. Why do I want to hear an apnea alarm when the vent self adjusts to handle the problem? Yeah--that might not stick once I"m home. I do need to learn about the other alarms, however.
ok...off to get something for his headache. Every pain in his body need. s a different medication.
Becky
Not feeling very Queenly tonight. Nothing comes to mind.
It's been a tough few months, with five ER visits and two hospital stays, three cases of pneumonia and one of the flue. No Matt, when you stop choking on every bite or sip it does not mean things got better. It means your body is so used to aspirating that it no longer reacts.
This afternoon we checked into the Durham VA MICU, where Matt will be trached and vented tomorrow morning. I'm actually ready for it, since that's what he wants to do. I certainly didn't want to do it as an emergency measure. Hopefully we will be home in a couple of days, where we should have nursing help from the VA.
I must confess that I finally understand how it can take an hour or more to get a PALS tucked in for the night....and this is someone who spent the entire day in bed. Matt no longer has any functional use of his hands--they move a bit, but they won't do anything for him. Scratch, rub, change the channel, blow, pick, wipe.... If you've been there you know what I mean, and if you're not there yet it's too soon to worry about it.
I'm no longer friendly at 3am. In fact, it seems I'm downright ugly at 3am. I will schedule at least one overnight shift a week. Other shifts I think may start at 7am...so they can handle the morning routine and I can go back to bed in another room. In this we are extremely fortunate. I DO NOT function well without sleep. I mean 7 good hours of sleep. If I had to do this all by myself, well, I don't know how long either of us would survive. I think perhaps as my darling was burning up his muscles and strength and hastening his progression with all of our adventures and travels, I was also burning up my reserves.
So, a new phase of this adventure starts tomorrow. No more slipping out for pizza and leaving him alone for 20 minutes. Oh...never mind....he was told to stop eating by mouth two weeks ago, so it's time for me to start that diet I've been putting off until he stopped eating. I do believe I will research diet services that send prepared food. Who wants to cook? I'd better do it soon--I've had nachos for dinner three times in the past week. That's not going to help anything!
I've been in a pretty deep funk for the past six months or so. This decline has been hard to take. I just haven't been able to find anything positive to share, and I hate being a downer all the time. Now that the terrible event is upon us, well, I almost feel a sense of relief. How stupid does that sound? I can just see myself re-reading this a year from now and shaking my head at my foolishness. Or maybe it's just more self-preservation.
The RT here in the hospital just turned the alarms on the vent on. Crap. Why do I want to hear an apnea alarm when the vent self adjusts to handle the problem? Yeah--that might not stick once I"m home. I do need to learn about the other alarms, however.
ok...off to get something for his headache. Every pain in his body need. s a different medication.
Becky
Not feeling very Queenly tonight. Nothing comes to mind.
