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So I haven't been very active here; there just hasn't been much time between the chaos of our lives and how quickly this struck my father and us all and how rapid it's progressed. At any rate, after so many obstacles we are able to finally get my dad home. He's being discharged from the hospital tomorow.

He's coming home on a home vent and the als association here is getting us a loaner power wheelchair, shower chair, lift. Communication is a huge struggle for us as I am not great at reading lips so we are hoping to get a loaner eyemax this week (god willing). The DME will be here to meet the ambulette and help us get settled at home the first day or so. We have suction and a nebulizer and basic suction equipment but not much more. We are hoping to get an inline suction script tomorrow and get that approved by medicaid (his medicare kicks in on the 1st of March).

now to my questions:)

1) we need a special hospital bed for the home because he's already got a stage 2 on his sacrum (it looked like a skin tear before but now def looks like a sore:( What kind of bed should we be looking to ask for? The social worker is going to be working on this tomorrow and we aren't going anywhere until that's taken care of (for obvious reasons)

2) how much help can we expect to get at home? We haven't heard anything about the home health agency and who will be coming, how often etc.

3) how much do you pay for your own private duty aid in the home? how often do they come and what do they do to assist you?

4) can you think of any supplies or things we will need that we should ask for upon discharge, just to get us over the hump before the home health gets situated.

5) I could use some encouragement because as excited as I am that he doesn't have to go to a nursing home 4-5 hours away from here, I am also so scared of not having doctors and emergency help available. My grandmother is a retired RN and I am an RN as well but there is just something about caring for my father that my RN brain goes dead and my daughter panic mode sometimes kicks in.

Pray for us!

-Lissa

P.S. just so you get the picture, and can think of what we'll need based on his needs: he's completely dependent and can barely move his arms/hands at this point. He can't speak because he's been aspirating and needs his cuff completely inflated most of the time (sometimes they allow it down for him to speak if no one can figure out what he's lipping but they really don't want us doing that often).
 
Hi Lissa! Well, I am glad to hear that your dad is finally coming home! Don't worry, your RN skills will kick in when you need them, once you are used to having him home. My dad is no where near as progressed as your dad, so I dont know all the stuff you need, but I am going to keep track of the responses here since my mom and dad dont want to face whats ahead, I will have the list. Keep us posted hun! I am sure plenty of people will give you the advice you need too!
Hugs, Kari
 
Kari, thanks for the response. I don't know why but I have a tough time getting help on this forum; maybe I'm blacklisted:p

My daughters name is Kairi, pronounced (kai-ree) so pretty similar to yours. Dad's bday is tomorrow and im trying to figure out what the heck to give him that he can find joy/happiness in. He's spirits are pretty low and hard to keep him happy these days:(
 
No way, cant be blacklisted! You will get a lot of responses I am sure. How about a book on tape? A good foot massage can do wonders for the soul too. My daughter got a book for my parents, (dad has ALS) I think the name was something like "Finding happiness" by De Puc Chopra (sic).....It is a great book, but dont know if they have it on tape. Hang in there hun.....people will respond!
Hugs, kari
 
oh lissa, so sorry there are not more responses yet, there will be. a lot of us aren't there yet in terms of needing the kind of care you are referring too. and i bet the cals who are there are so busy it just takes a little time to answer....i am sorry i can't help you with suggestions but i think about and pray for the posters on this forum every day....

hugs to you dear
 
We are getting a hospital bed soon, with a alternating pressure. I do not know much about it, but it is because myhusband has been getting pressure points on his hips. Check Hil-Rom beds
 
Hillrom is awesome; we use them in my hospital and would love to get one of their air beds with a scale built in would be awesome but I was told medicaid/medicare won't send unless it's greater than a stage III. Is that true?
 
Hi Lissa,

I don't know the answer to all your questions but had a couple of thoughts.

In regards to the bed - when I had a complicated case (use to be a discharge planner) I would ask vendors such as Hillrom what is the best bed the patient is eligible for given the clinical presentation and coverage. Often asking what specifically the doctor needs to write on the script for the specialty bed. Can you or have you already spoke with the Hillrom rep for your hospital to put you in touch with the residential rep if they are not the same person? The wound care nurse is also a good resource for this and should know the wound stages and which bed system he qualifies for at home.

Have you talked to the Home Health liason? The liason can tell you when they will arrive after discharge - insist on a same day visit. Ask how often they anticipate (based on needs and coverage) that they can make visits to the home. With heavier skilled needs such as a vent, trach, PEG, wound dressings they should be able to come daily initially. The company should check his insurance coverage and be able to give you an idea of this before he is discharged. You should also ask questions to ensure the agency can staff the level of skilled nursing visits needed.

Private duty in this area goes for $12-$16 an hour around here but that is for assistance with ADLs (dressing, bathing). For help with skilled needs the rates are higher. I am not sure about your area but in KY if you qualify for Medicaid, there is a special vent waiver program that covers respite up to 16 hours per day so you can ask about this (however the hospital should already have started this application process if he is eligible and coming home on a vent.)

As far as recommendations for supplies, I would make a list as you meet with staff educating your family on care needs. The pulmonary nurse, dietitian, nurse, therapist, etc. You should also get a print out from the hospital on the day of discharge that includes his medications, written nursing instructions for trach, vent, wound, etc., follow up appointments, list of equipment arranged (identifying who is delivering what -could be more than one company) and home health agency contact to help you organize the transition home. The discharge planner should review this with you guys prior to discharge.

It is a big transition but as others on this forum have proven it is manageable and takes some adjustment. Hope everything goes smoothly for you guys.
Dana
 
Hi Lissa,
My friend just came home after a long hospital/rehab stay. She also came home on a vent and a PEG. She has a nurse about 12 hours per day and her husband has been trained on the vent care. Her hospital bed was place in part of the living room and a friend put up a curtain rod to partition off the space and allow for some privacy. Another friend bought a small flat screen tv to put in there so that she can watch movies and tv when she is in bed. Her level of disability is similar to your dad's and I am wondering how to go about getting her a dynavox. If you have any info about that I would greatly appreciate it.
One piece of advice that i also gave my friend before she came home: be ready for a big adjustment. Coming home is very exciting and and it is, of course, what everyone wants and needs. It is also very difficult because, often, the PALS is coming home in a more dependent state that he/she left in and that is very difficult, both for the PALS and those who care about him.
I'm so happy for you, your Dad and the rest of your family. Try to relax as much as possible and enjoy this special time! I'll be thinking of you.
 
Hi Lissa,
I will say a prayer for you and your family tonight! I hope the social worker comes through big time. Stay on her...
Sandra
 
Wow..you are an amazing daughter! Thank goodness you have all the nursing training..it will kick in when you need it. I really do not have ideas of what you will need for the vent. But, I can help with birthday ideas. My hubby is really enjoying listening to his audio cd's. He also enjoys a nice foot bath (can pick them up pretty cheap). How about one of those indoor outdoor thermometers. Fun to know the temp inside the house and out. My husband is able to read his Kindle through his eyegaze system. I am in hopes that you get your hands on the system quickly..will help sooo much with the communication issues. Take a deep breath! More members will be chiming in soon.
 
Lissa,

I don't have the answers to all your questions but wanted to reply anyway. :) I am an R.N. too and like you, am in scared daughter mode a lot of the time. My Dad has ALS and is now under hospice care. He is at home and has a hospital bed ( covered by Medicare ) for which hospice got him a nice gel mattress. ( It even has an alarm on the end of it so Mom will know if Dad wakes up and scoots himself to the end of the bed. ) If you want to know the makes/models of these pieces of equipment I'll try to find out and let you know. But Medicare covered getting the bed. Other things you may need to borrow 'til insurance coverage kicks in can sometimes be gotten through the MDA. ( They have loaner closets. ) I am planning to call hospice tomorrow so will try to remember to ask what cagegiving costs are per hour. ( Mom hasn't shared that info with us daughters. ) I agree with others who mention things like foot massages, having a DVR so you can rent movies for watching, have something to play music, etc. Feel free to PM me if you want to talk. I don't think hospitals do much more than send a nurse out to check vitals and teach you how to do basic care. Don't expect to get a lot from them.

Debbie

Debbie
 
See, now there there Lissa, I knew people would soon be here with the answers you needed! These are such a wonderful group of people, we are all like a big family here. You are now part of that family hun, so dont be shy, keep posting, venting, whatever you need, we already luv ya!
Hugs, Kari
 
Oh can I ever identify with the "that my RN brain goes dead" syndrome! Someitmes I think that the NOT KNOWING would be so much easier and we could just step back and take the pressure off of ourselves. :] Great advice above. Let us know how all of you are doing and know that even though we may not have the answers, we are always here to offer you and yours support! hugs, Kay Marie
 
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