Venting tomorrow---which will surely cause more venting

Amazing what a difference the right, or wrong, staff can make!

Sleep girl - you are going to need as much as you can get now before you go home xxx

Becky, I'm late at checking in here, but wishing you and Matt the best and hopefully Matt is doing well on the vent.

Hope you guys are doing good. Did you get some sleep?

SO sorry about not letting you all know how we are doing. We both came out of the hospital sick. I'm feeling much better, but something is still lingering. I can't seem to get enough sleep... The more I get, the more I want. Imagine that.

Matt is doing better with the trach. Unfortunately, the mucus plugs and excessive saliva have set in, but we have a wonderful nurse who has a list of things to try (on top of all the good advise I've gotten here).

I'm adjusting very quickly to having other people in the house. The more the merrier!!

I did what I said I would, and ordered Jenny Craig. Now that Matt is on the feeding tube full time, I figured I'd make life as easy as possible. Now, of course, he wants specific things blended for his tube. I get it, and we're happy to do it, but I guess I will keep having to make the trip to the grocery store.

I've been working like crazy trying to put the house back in order after moving out of my closet to make room for the flood of supplies that arrived even before we got home. Two rooms were full of boxes. Then there was the taxes and all the mail and bills that needed tending to... I'm almost there, so maybe now I can sleep. I've claimed a guest room down the hall as my space. I still sleep on the twin bed next to him at night, but I now have a place for my cloths, where I can dress in peace, and a place for napping during the day. It's a luxury.

It's ironic--after four years of constant going and changing and doing it pretty much alone, I now have more help and more leisure than I've had till now. Unfortunately, now that I'm relaxing my body is taking it's revenge for all the stress. I am blessed that I have the chance to do a bit of me maintenance while my darling is still here--I just hope that I've got my energy back by the time he wants to start getting out and about again.

maybe it's time for a nap...

Oh, here's a real hoot. I was exhausted one night and went to bed without eating. At some point during the night, I woke hungry and I remember wishing that someone would put food in my G Tube. I don't have a G Tube, of course, and as soon as I realized that I was disappointed that I had to wake up fully to feed myself.

no...about that nap....

Becky
Queen of Craving Sleep

Sleep all you can while you can, I bet you need a LOT!

Ok Becky, now I’m looking forward to getting a G-tube

Becky, I slept a crazy amount after Steve died. He refused most outside help. Take advantage of helping your body to heal. It has taken me a long time. I am glad you are getting a jump start.

Becky,

Glad to hear things are a little better. I like your idea of taking over a guest room as your own little get-away. I have to admit, last week while DH's aide was here, I snuck away to our old master bedroom to take a nap. It's been empty since we remodeled to put a master BR/BA on the ground floor. I've been thinking of making it a guest room, but I may steal your idea and make it a little retreat for myself. So many nights I am not getting enough sleep. But the G-tube, that I think I will skip!

Now, go get some rest girl!

Becky/Queen of craving sleep - so good to hear from you! I am glad that you and Matt are doing a bit better/on the mend. Although you have been at this longer than I have, I know what you mean about going it alone. So far I have only had help on the one weekend day per month that I must work to maintain my license. Everything else I have done on my own, including independently driving Dave & I to FL and back; it was well worth the work, as once we were settled we had 6 weeks in the warmth & sunshine rather than the harsh and bleak PA Winter in Feb! I also can relate to your comment about the onslaught of all the equipment, etc. We have a relatively small home with a very open floor plan. It was perfect for us while Dave was well. Now I feel like I have a ton of equipment and supplies and I've spent a small fortune on Rubbermaid type trunks/boxes to store things in our basement or garage. I have a totally weird sleep schedule (hence the replies at 2-3:00 a.m. from me) because Dave calls me via the "baby" monitor multiple times per night for adjustment of positioning, the urinal, etc. Yesterday I finally got some sleep at some point after 5:00 a.m., compliments of Zanac. I also feel like you - like I could sleep an entire day if I was given the chance. I think this is an escape mechanism of sorts as well as non-stop emotional fatigue for the past 2 years. I hear Dave call me even when he really is not - as my mind plays tricks on me. I awake startled and stumble into the living room only to find that thankfully, he is just fine. I seem to be like a new mother in a way who is in tune with every little odd sound or change of breathing pattern from Dave. We only have one downstairs bedroom, which is approx. 25' away from where Dave sleeps in the living room. So, I am very close but not right next to him.

Hugs to you Becky as I know you have more on your plate right now than before.

Becky what an awesome report. Yes, the mountain of supplies for the trach are just that, mountainous. We too have a walk in closet filled with them. Just wait and see what you collect.

I’m glad you have the help and are taking care of you. You definitely need it.

About the g-tube, I think I’ll pass :lol:

Enjoy the respite

Hugs,

Sue

Becky - thank you for sharing your stories. I too struggle with the constant need for something from my PALS. I got our caregiver to come for one night last week and I actually slept and not on the couch like I've done for the last year. Best wishes on the vent - you give me confidence that I might be able to manage when and if the time comes.

Emily

Hi Becky, Happy to hear that you and Matt are doing better and that you have so much help. Thanks for giving us an update, Kate

Thanks for the update! Now go back to sleep real quick, hehe.

Glad you're adjusting well to the new people. Next week a new nursing service will start to work here and I'm pretty confident that it's gonna be friendly as your motto could be mine. Still I'm a bit tense about the whole change.

Have a good rest during the Easter holidays (although the essence of Sundays and holidays somewhat vanishes for a caregiver) and enjoy your private room!

I've read lots of posts about caregivers not showing up. That wasn't my problem....

I was supposed to have a nurse and an aide here Friday, plus another nurse doing training.

I had to send the aide to the doctor because of a persistent cough. No problem, I had two nurses coming.

I was up and down all night, so I really really planned to go back to bed when they arrived.

My favorite nurse walked in the door wearing a mask. She had a low grade fever and had thrown up the night before, but felt so bad about the fact that she was supposed to be training that she showed up to find out what I wanted her to do. Silly rabbit.

I told her to go home, that I would do the training (so much for the nap). She was so woozy that she said she would nap in her car before driving home. Nonsense, I took her upstairs and put her to bed, then came back down to start my shift

SHe slept 8 hours. She felt so bad when she got up that she called AAA to take her and her car home. When one of the company owners called to say he'd heard I nursed the nurse, we agreed that as a mother of young children, she probably got more sleep at my house than she would have at home.

At the end of the day, Matt approved the "training' nurse for duty, and she is here today.

I won't know about the aide until she gets the reports on her extra on Monday, so I"m on my own Sunday and Monday. I think I will camp out in the room with my guy and and nap between channel changes and suctioning.

This, my friends, is what happens when you start to look forward to napping

I wish you all a peaceful Easter.

Me, I just hope the Easter Bunny does not impale himself on my fence like his cousin did several years ago. On Easter morning. Good thing the grands weren't here that weekend...

Becky
Still finding silver linings...just having to look harder.

You make it sound like a sitcom, Becky! :-D
But I really hope you get enough sleep. Try to take care and kick out anyone with nasty germs!