CALS Roll Call Continued

You're right Sue - Medicare or Medial disability in the US will only pay for the most basic item that can do the job. That would be wonderful for Brian and for many others who are basically comfined to bed, if a bed like you described would be rentable or at least partially reimbursable.
 
Thanks all for the kind thoughts and support -- fantastic. I'm so glad to hear the good updates this week so far. They were wonderful company while we were back in the hospital -- mom's journey with the feeding tube replacement ended with the flu, and the coughs attributed to sedation got worse and worse until the RT from clinic came by the house on Friday to check on her and bring a suction device. Well, she called the Pulmonologist at clinic and he had us go in to the hospital. A few hours back in the emergency department (which, thanks to the flu, was overrun and insane!) then up to the medical ICU, several days of stabilization and a complete review of her care plan (including Tamiflu for mom and for me(as a prophylactic). Clinic personnel were great even over the weekend doing consults with the staff in M-ICU and visiting us before she got out today. I *knew* i shouldn't have celebrated being in my own bed! Thank heavens for icu recliners!!! I did make it home every other day for a shower (that felt SO indulgent! yay!) and each time i stopped and told my bed i missed it! :)

As for mom, after days on Lasix, and trying an in-and-out catheter, she came home with a foley, so it's a whole new stock of supplies, since the nurses told me not to use the Tena briefs (i hate saying 'diapers' in regard to my mother) anymore , so i'm trying to figure out how to handle what happens if/when i can't get her to the commode in time. and of COURSE i just ordered a new case of the Tena's.... Anyone have any recommendation on a foley stabilization device? i'm trying a couple from amazon.

didn't throw a single tantrum ... ME! imagine. I think the plan was to make me too tired to have the energy to do so! (joking) \

Truthfully the staff was awesome and very considerate of her als, but I cannot imagine how she would have fared without a person with her at all times; Every time i left her for a short break, she was in a full panic every time i returned because she needed something badly.

This is sort of random. Maybe a little sleep will put my brain back in order!
Best thoughts to all!!! :)
cee
 
Medicare and other plans with a DME benefit will always kick in for any kind of first hospital bed if coded correctly by the supplier and bundled with the physician's order; the PALS is responsible for the difference between what the supplier charges and the pre-determined reimbursement.

While lateral rotation looks cool, the same move can be accomplished with 2 people and a slip sheet with handles, and many PALS are not going to be able to maintain the trunk position not to fall out of the "chair" position during a transfer, so you would need a second person anyway -- one to hold him up, and the other to operate the lift, same as you do with the slip sheet pivot turn.

And the "chair" position is achievable with an everyday hospital bed with a reverse Trendelenburg positioning/cardiac chair feature, which should always be recommended in ALS.
 
Cee - man, I am sooooo sorry for all that you are going thru. Blessings to you and your mother. I know she is a very fortunate to hav you in her corner watching over her, loving and advocating for her!

Laurie, would you please elaborate on ...... "And the "chair" position is achievable with an everyday hospital bed with a reverse Trendelenburg positioning/cardiac chair feature, which should always be recommended in ALS"?

The bed WE had delivered is an antiquated piece of S**t - seriously. Since I have worked in many SNF's, acute care environments and most recently, short-term intensive rehab., I kinda know lots of beds. What they delivered to us is the type that many long term care / SNF's that are struggling have. It does not have a reverse T position as an option. And, as far as a cardiac chair option, if you mean simply that the knees are bent up (30-40%) but the head is elevated above this position - then yes, this bed does that .... This has not been an issue yet, but when we come back home form our trip to FL I am sooooooo canceling this bed and demanding a better one. For the rental price paid per month I expected way better.

Regarding the lateral rotation feature, I still think that would be a good option when and if a CALS can still accomplish SPT's by themselves from bed to chair/chair to bed. The 90 degreee angle of transfer without need to reposition furniture so much would be helpful. At some point (when a 2 person assist would be needed) this feature would perhaps be just as easily accomplished with what you call a slip sheet (patient transfer "sheet" - preferably with handles). Unfortunately, we are all caught in a situation whereby what we may need at the present time to make the lives of PALS/CALS easier and safer is often not justifiable via Medicare reimbursement rules. When we finally reach that point (of medically necessitiy) - our PALS have moved on to another level of need. This of course is not exclusive to ALS.
 
Cee so sorry for the week you have had with Mom. So glad you could be there with her in the ICU. I’ve definitely done a few stays myself. Here’s hoping this week is better for you.

This week for us was a bit crazy with dying smoke alarms. Brian lost his thumb for a few days and was forced to learn the eye gaze. His thumb is now back, but we were able to get a good calibration after his bath, so he is using it now.

Hope everyone had a good week.

Hugs,

Sue
 
Buckhorn,

You want a "full electric" hospital bed (which for some people, would be a bariatric model and for someone 6-feet+ should be an 84" length) that somewhere in the description says "Trendelenburg/reverse Trendelenburg" and "cardiac chair position." If you look at some of the bed supplier sites, you will see such things. Let me know if this is not clear...
 
Quick update . Brought hospice in on thursday. We are chasing that awful als cough with atavan and morphine and atropine drops, with constantly-shortening intervals. Awful.

Cee
 
hugs Cee, thinking of you, there are no real words for the horror that is ALS xxx
 
Sending you and your family lots of love Cee.
Megan
 
Laurie, the bed we received is what we were told Medicare would pay for; it is a very, minimalistic, basic function bed that is often found in long term/SNF facilities. The head will elevate, the knees will elevate, or any combination thereof, but no Trendelberg/reverse Trendelenberg positioning. It is not a fully electric bed (height elevation is a manual crank) but that is not a big deal for me. But, it is really a junky bed!

On another note, we finally received lateral supports for Dave's Permobil wheelchair, and it is another screw up! They must have installed pediatric lateral supports. There is 10.5" between these supports! WTF?! I thought it looked very small, and when I closed them on myself it was quite snug! So, tomorrow I have to contact the DME supplier - but I'm not sure what wil happen, because we are not at home now (on our way enroute to FL) and we will not be home for at least 6 weeks.

Cee, I am so sorry for the continued stress, sadness and challenges in your life.
 
Thinking of you Cee, hugs as you navigate the latest issues.

Buckhorn, the way our lateral supports work on Brian’s Permobile, is they slide thru a hole on the back of the back rest. Hard to describe, but you only push them in as far as needed. I’m wondering if they have them placed wrong?

Hugs,

Sue
 
Right, Buckhorn, Medicare chips in for a "better" bed and you would pay the rest. My point was, you still get something in the way of reimbursement. That said, in your case, I don't know whether you own/rent it, but if you rent it, you can swap it out via the DME that way, if you specify the bed you want. It is the DME filing that allows for in-network reimbursement.

Also, if you used a national supplier like National Seating & Mobility or Numotion for the Permobil, you should be able to call and then go by one of their branches closer to wherever, or meet someone on their way to/from a call, and get them to reverse the supports or whatever needs to be done. For that to happen, you will likely need to play the ALS card.
 
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Oh beds. Why are they such a pain in the neck to get the right thing. You would think that people who provide hospital beds would understand that if you are in bed the majority of your life, it should be exactly what you need to be comfortable and helpful for the remaining time you have on earth. Why should a person be even more uncomfortable as they phase into their next journey? I wish the insurance folks would allow for some heart and common sense into their bottom line philosophy.

Sorry for the rant. I just got off the phone with my mom who is getting weaker by the moment. She wanted to “warn” me that she will be asking her doctor how much longer she has at her next appointment on Thursday. I reassured her that I understand and respect everything she is doing and will help her in every way I can.

I feel like I am having an out of body experience.
 
Her- hugs to you. You are being an awesome CALS and daughter by letting her choose her course. It is never easy, but you will sleep better when it’s over, knowing you followed her wishes.

Hugs,

Sue
 
Oh beds...yes, with ALS they should just get the best and be done with it. Our local hospital is brand new (like about six weeks), and all the equipment is brand new so that they didn't bring over bedbugs from the other, very old, hospital. No alternating air mattress--Matt had stage one stores on his butt after one night, and then we were into the turning every two hours mode. What a pain. I did learn that they have a couple of air mattresses on bariatric beds, and they even have a couple rooms with ceiling lifts. Next time I know to ask...

We have a lateral turn mattress. I is designed to turn him side to side. Right now it's only set at 10 degrees, but that's enough to add more movement and he does not get as stiff. It will adjust up to a greater turn, which I understand is good for moving fluid in the lungs.

He is spending more and more time in bed. The last few days he has announced what he wants to do tomorrow, but then ends of sleeping the day away. The shower is about all he can manage..

I think at the very least you need alternating air, to prevent sores, and low air loss, to evaporate moisture from sweat. We received complements in the hospital about the condition of Matt's skin, and I give a lot of credit tot he bed (as well as his aide and I).

What I wouldn't do for a reverse T. That'll be my next battle.....after I get the filing done....

B

Becky
 
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