hospital bed, mattress, pressure sores, dynavox, oh my!!!

[initforever]

At our latest clinic visit we were advised that it was time for yet even more equipment than we were prepared to hear. Time for hospital bed, special mattress, dynavox for speech and change in PEG formula. This has left me with little time to research therefore I am asking those who have been there or have already done the research for your input and advice of what to request/insist on or need to pay out of pocket in order to ensure his comfort. Due to progression we are now having to determine what type of hospital bed, best type of mattress to prevent pressure sores (presently has one on buttocks and back). Also due to his constant use of Trilogy the face mask is causing marks and soreness on bridge of nose and cheeks and I am worried that these areas may soon become an issue too. Is there anything that can help besides coconut oil and lantiseptic skin protectant cream?

 

[lgelb]

Trilogy soreness: thin cotton liner (can buy online or cut by hand), "gentle paper tape," "micropore tape," grapeseed extract ointment, vitamin D ointment, more I'm not thinking of. And possibly a different mask. Which one is he using?

Hospital bed -- are you taking the Medicare-approved version or willing to pay extra? How tall is he? If he is completely immobile, he qualifies for an overlay even without pressure ulcers. If the sores are at certain stages and once conservative treatment has been tried (yes, it's backward), he might qualify for more, like a low air loss mattress, but not everyone does best with those. It's a complicated algorithm.

How much time does he spend in bed and what is the environment that the sores developed in? It can be the wheelchair setup, the bed or both that need fixing up.

Do you have an equipment firm that you are working with?

As you will have read here, Dynavox is not always the answer. I would get the other equipment stabilized so you can see the context for speech generation, before tackling that.

Why does he need a PEG formula change and what is he on now? That would help us recommend.

You might want to read the equipment sticky if you haven't yet. Above all, don't feel pressured to do everything at once and to be rushed past ordering what's best. We'll help however we can.

Best,
Laurie

 

[initforever]

His mask is Airfit F20. (covers both nose and mouth. We have tried loosening the straps and unfortunately that seems to allow for leaks.We have tried the soft cloth liners along with w gel pad that lays on his face prior to placing the mask on. Even tried just the nose mask and he says it tends to "blow out his ears".I keep encouraging him to continue to try and work up to using the nose mask. It may just take some time getting use to it like it was the full mask. Someone suggested getting a memory foam lined mask, which we will try.
Hospital bed~~Haven't heard from the insurance co yet in regard to the approved version they will cover, however I'm trying to prepare myself if there is better and why. Yes we are willing to pay for better though at this time I'm not sure what better is. His mobility is limited in that he can no longer walk, stand or transfer by himself. So yes he is with in his lift recliner chair, Power wheelchair or bed. As far as the pressure sores One was under shoulder blade and the other upper buttock area. We rotate different cushions on his lift chair, one with sheepskin covering. His power chair has roho cushion. I don't believe the cushions are the source.
Formula change~~ now that he is no longer eating nor drinking my mouth we are having stomach and bowel issues. Formula change is due to trying to alleviate. Presently he is taking 40-56 oz of water a day through the PEG along with Nutren2.0, 5 containers daily. They have switched him to 3 Nutren2.0 and 2 Isosource1.5 daily. The hope is that helps with constipation as his pelvic floor muscles and core muscles are getting much weaker.
I agree the Dynavox decision is not at the top of my list of 'needs done immediately' and we have some time to research through that. Right now it's his comfort and respiratory issues that need addressed.
Thank you in advance for your help and understanding. As so many on this forum know first hand there are days and even weeks that are more overwhelming than other ones.

 

[Lscott71]

I use an RX cream called Topicort on those red areas that develop because of the Trilogy mask. Works like a charm!

 

[KarenNWendyn]

The main caution I would advise with topicort is that it contains cortisone, a steroid. Steroids can exacerbate infection. So if any of the wounds look moist or have a area of expanding redness around the wound, I probably wouldn’t use it on those wounds, but have doctor or nurse inspect those particular wounds.

Same goes for any open wounds inside of skin folds, such as in gluteal fold, under armpits, under breasts, or under abdominal fat pad. If those are red, there is often a fungal infection due to moisture, and an anti fungal powder would be best.

 

[Nuts]

We have been using a lateral turn (helps the lungs by keeping secretions moving), low air loss (keeps the sheets dry) , alternating air (changes pressure points) mattress since right after hubby went into the hospital bed. The VA balked a bit at the lateral turn that early, so we ordered one online (5k as opposed to 10k from a local company). We are past the 4 year point, the only movement he has is in two fingers and his head and neck, and he's never had an open pressure sore. We do get him up once or twice a week for a full shower, but mostly he spends his time in bed.

Every time we go to the hospital the nurses are amazed at his skin.

Having said that, it's a LOT of work. Even with the special mattress, we put pillows under his butt when it gets sore and we use Butt Paste when it starts getting red.

As Laurie said, the same thing doesn't work for everyone, but if you can afford the extras get them. You can't use them if you don't have them. If you can't get them, turning a Pals every two hours will help prevent the open sores.

 

[lgelb]

IIF, his ears should be able to tolerate a nasal mask, if the Trilogy settings are optimal. Let me know if you want help adjusting them. Most PALS do fine with a nasal mask, and it is easier for any talking/eating/oral care, among other things.

As for the frame of the bed, you want one with four buttons on the control: head up/down, whole bed up/down, whole bed slanting (like a seesaw; e.g. good for urinal use) feet up/down. The description will say Trendelenburg/reverse Trendelenburg (the latter is the seesaw up position). If someone is 6-feet plus, you will want an 84" length.

If you opt to go with a regular overlay while evaluating the more advanced options, latex foam or furniture grade foam are both options and not that pricey. You don't want him to just rest against the medical grade foam mattress, as it is not generally pliable enough for PALS. But you don't want him sinking too much as he can get stuck in terms of movement and that would also signal heat buildup that can lead to pressure injury.