Hi, Geoff. I remember what that is like, and it's no fun. Here are some of the things I'm glad we did:
(1) I asked some friends to help get the house ready, including completely re-arranging some closets and counter space to store and manage all of the new medical supplies. Note that over time we learned that our inventory needs would be somewhat different from what we first thought they would be, which required some additional reorganization efforts down the road, so be prepared for that.
(2) Be prepared for a rough first couple of months. The surgical wound is still healing. Everyone is getting used to a new routine with new equipment. A lot of trial and error is taking place. Finding out what works and what doesn't work means suffering through all the stuff that doesn't work. For example, they initially had a humidifier on my wife's ventilator, which did nothing helpful and just got the floor wet. We later found that an in-line HME works much, much better for keeping her humidity up, without any wet mess. We went through a number of kinds of suction catheters before settling on the one that works the best. Initially, there was a blood on the trach dressing every time we changed it. Eventually someone suggested applying Lidocaine ointment to the trach site during dressing changes, and there has never been any blood since then. Dialing everything in took a few months, so be prepared for that.
(3) We arranged a visit from another PALS who had been living with a trach and vent for several years. I will never forget the surreal scene of two PALS sitting motionless across from each other while having a very nice conversation on their eye-gaze computers. It was like something from Star Trek. That encounter was uplifting and made the whole thing seem a lot more "normal" to my wife.
(4) Going out in public shouldn't be much different than it already has been, except for the suctioning. This is always loud and can be embarrassing. We manage to find private spaces to do this. At the movies, we sit in the back of the theater and try to wait for the loud parts for suctioning. In the wheelchair van, suctioning is a challenge. You need to be ready to pull over at any time. and have things where you can get to them quickly. I once suctioned my wife's trach while I was at the wheel in the fast lane on the highway, because traffic was at a standstill and I did not have any way to pull over. This isn't something they prepare you for in the hospital.
(5) As for the kids, ours weren't freaked out. They had already seen what ALS was doing to their mom and had seen her go through other surgeries before. If freaked out kids is ever a concern, it's time to call the ALS social worker and get some expert advice.
(6) Even large families often need hired care workers to cover shifts with a vented PALS. After my wife got her trach, we started hiring LVNs instead of unlicensed care workers. If your health plan won't cover the LVN shift care, you don't need to pay contract rates to an agency. We found our LVNs by placing help wanted ads on indeed.com. I don't know what the going wage is in Orange County, but I imagine it isn't much different from San Jose. Here, staffing agencies are paying LVNs as little as $17 per hour (but I don't think we could hold on to employees at those rates, so we pay more than that). Note: Consumer Watchdog is currently working on the problem of inadequate home nursing coverage for ALS patients in California, so if your wife needs care workers, you should consider calling Consumer Watchdog and sharing your story.
Pamela Pressley
Consumer Watchdog
Consumer Watchdog | Home
2701 Ocean Park Blvd., Suite 112
Santa Monica, CA 90405
310-392-0522, ext. 307
310-392-8874 fax
[email protected]
Best of luck to you!
