We are now nine days into home hospice care and there isn’t a lot of big news to report. But it seems like it is time to post an update of some sort. So here goes.
Hospice nurses
Between scheduled visits and visits devoted to wound management issues, a hospice nurse has been here every day but one (Sunday, which turned out to be a relatively quiet, peaceful day with several naps). We’ve only seen our primary nurse once, but we have appreciated all the nurses, especially Kate, who has been here several times and has been quite proactive in helping us get the supplies and information we need.
Supply chain issues
Getting the supplies has been a bit of an adventure, but aside from some new things ordered yesterday, everything has now arrived.
Wound management
The wound managers fail at irregular intervals, but fairly often, so we’ve been replacing one or the other or both several times a day (or night). It usually takes at least 45 minutes, to replace a wound manager. Under optimal conditions (read: that happened once), we can do it in 30 minutes.
The skin around the the tube site is suffering from what is basically a second degree acid burn that keeps getting acid applied to it. The skin around the fistula is only a little bit happier. Tuesday afternoon the burning was especially bad, and we had a nurse come in the evening to see if we could make things better. She has had some experience with wound managers and had a few things for us to try, but suggested that we have a consultation with the wound/ostomy clinic the next day to get advice from people with even more experience with tricky situations.
Wednesday while our nurse was here for one of our scheduled check-ins, we had a virtual consultation with someone from the wound/ostomy clinic, a doctor, and a pharmacist. Everyone is in agreement that this is a challenging situation, but we’ve come up with a couple more things to try. For the tube site, where the skin breakdown is worst, we have a special prescription cream to put on that combines a protectant (to keep acid off the skin) and a topical opioid pain killer, among other things. (Baby butt cream on drugs is not too far off the mark.) We won’t be able to use it as recommended until the next time we replace the wound manager, and we aren’t eager to replace a wound manager while it is actually working, so we haven’t given this a try yet.
Fortunately, Wednesday was quite a bit better than Tuesday with respect to the burning pain at the tube site. The bouts of burning were fewer and perhaps not quite as severe. But I suspect there will be some ups and downs and that we will continue to experiment.
On the other hand, we had lots of grief with the the other wound manager, replacing it at 8 am, 5 pm, 11 pm, 2 am, 3 am, and this morning at 6:30. We’re hope this most recent one lasts a bit longer than the previous several, but one never knows.
Nutrition
The opening of the fistula has had one positive effect: Eating is no longer associated with pain and nausea the way it had been.
Eating does bring other challenges (see the section on wound management), and given all the things going on with the digestive tract, it is impossible to get enough calories, so Penny continues to lose weight. This compounds the troubles with the wound managers, which are not designed for people with so little body fat.
She’s still strong enough to get from one room to another with her walker, but spends almost all of her time in bed. The special bed from hospice designed to prevent pressure sores seems to be working and she says it is reasonably comfortable.
Family and Friends
Between all the medical things, Penny has enjoyed visiting with friends and family. Nik and Maia are in town for the holiday weekend, so we anticipate spending the next couple days with our kids and their spouses.