Home with the vent

[catcaniac]

Hey all,

Sorry I haven't had time for an update. I am typing this in between feedings, suctioning, trache care, body positioning, bathroom needs, bathing, meds, etc. We are finally home from Duke. Life has been almost a nightmare. My two week 24 hour nursing allotment has been more like 8 or occasionally 12 hours and some days 0 help. When the nurses do come it is almost like babysitting. The vent service company has been horrible. I have learned to be almost a respiratory therapist in a weeks time. Most nights Eric sleeps no more than 3 hours and wakes in between. The suctioning is almost nonstop. He is 24/7 high maintenance. I love him so much and feel so bad for him as he can do nothing for himself and seems miserable most of the time. I am exhausted and worn out. I hope everyone else is doing better than we are. When I do get a break, I am making phone calls or talking to health care people trying to get all of the screwed up health care issues worked out. Maybe in another week or two we can get into a groove of some kind. Take care all in the meantime. Btw, I hate vent alarms

 

[LornaDoone]

Holy cow.. sounds nutzoid! What kind of nursing care do you have lined up? Curious what is needed now for you guys. Hoping things settle down and you can chill for a few minutes.

Lots of love to you

 

[laurel]

Sounds truly overwhelming. I would think the suctioning will lessen as your husband's body adjusts to the trach. I hope so anyway. Thinking about you and admiring what you are doing to help your husband. Hugs to you both.
Laurel

 

[michael0314]

Bless you and your deligence and love for your husband. I hope things level offf for you and yours very soon.

 

[Miss]

I am so sorry. It is so hard to function with so little sleep. ou are in my thoughts and prayers.

 

[abbas child]

Cathy, I'm glad you and Eric are home, but hate that you've been left with so little help, and that the sleep is so short. Like others have said, I really admire your gutsy love and pray this becomes far easier quickly.

 

[Jellycat]

I'm so glad to hear you are home. But wow I do hope you get more help and that things get a little easier for you both...and soon. Thinking of you

 

[katekath]

I am so sorry to hear it had been so bad. *hugs*I hope the suctioning will lessen as time passes. My mum required very frequent suctioning when she first got her trache and only stabilize after a while. She did require more suctioning when her trache tube gets changed, but the frequency dropped after a while too. We managed to get into a routine after a few weeks and that helped a lot. So I hope the same for Eric, so you can get some rest. Take care and I am thinking of you.

 

[Danijela]

Hi,

I do not have a first hand experience with a trache, but from what I have read over the years the hardest part is the first month. Hope you find a good routine. Dani

 

[Katie C]

Dang girl.. I am SO sorry things have taken this turn. I truly hope you can get some help and get a break soon... you burning out would just be bad all around! Take care.

 

[CoachMeg]

We are all rooting for you to find some balance and help. Hugs to you and Eric and I pray you get some relief soon.
Love and light
Meg

 

[joni51]

Wow talking about overwhelming! I so hope things do get into some kind of balance and routine. I know you already sound worn out. Sending (((HUGS)))to you, and will be praying for you and Eric!

 

[LauraW]

Cathy,
I can totally relate to all of that. When Mom first came hom it was like that for us. I have a few suggestions...things that might help the constant suctioning. Do you have a cough assist? We crush papaya tabs to a powder then Mom rubs the powder on the back of her tongue. This helps bring the mucus up. We do this a few hours before bed. We also use children's liquid Mucinex...the generic form is just as good. 2-3 times a day...2x's the children's dose. Not right before bed though. A humidifier also helps. I give her tylenol pm every night. I will think of more things. Does your husband have a cuffed or non cuffed trache? Any help I can bring just let me know.

 

[Lynn Synclair]

What is the suctioning like? Is it productive? thin? thick? Does it trigger a cough? I have seen the need to fine tune the guaiffenisen (mucus thinner) so that the mucus stays thin but does not become too productive. Do you have cough assist at home? That can make suctioning much more efficient too and my client likes how it feels most of the time.
I totally sympathize with the need to face a learning curve that seems insurmountable. What kind of help can you expect in the near future?
Our local ALS association has a loaner closet and we were able to get a really nice air bed that reduced repositioning by half. do you have a loaner closet in your area?
I work 50-60 hours a week with someone who seems in a similar stage of ALS and I ache all the time, but them I go home and rest. My heart aches to think of what a 24 hour shift looked like for you.

 

[flower]

Iam so sorry you are having such a tough time . When I first got my trach it was alful,I had to be suction all the time. It is much better now. We all will pray that you get some relief.