Today was a "hospital busy" day, especially in the morning and early afternoon when a steady stream of folks stopped by to check on Penny. It's hard to succinctly summarize Penny's situation currently, but here are some pieces of the puzzle.
P is for Pain
Penny had quite a bit of pain yesterday afternoon and last night. This didn't seem to surprise the nurses, but at one point Penny asked one of them "Why didn't anyone tell me there would be this much pain?" She would rather have been prepared. She had figured the small incision and threading a tube through would be much less traumatic than the big abdominal surgeries she has had. Turns out abdominal muscles don't like small incisions and tubes being threaded through them either.
The good news is that the pain should lesson much more quickly after this procedure than after her big abdominal surgeries, and things have been much better since about noon today. Around 8 am today they gave her a muscle relaxant to help with the abdominal pain. That medication made her feel like she "had just gotten off a roller coaster and was dizzy and queasy", which she didn't like at all. But when that feeling wore off around noon, the pain was mostly gone (still with the assistance of pain meds). But if it returns, she says she'll skip the muscle relaxant and just ride out the pain.
So far, so good on that front. She's already transitioned from opioid pain meds (Dulaudid and Oxy) to Toradol and Ibuprofin with good results. We're hoping the reduced pain will make for a better night of sleep tonight.
H is for Hospice?
Around noon we had an information session regarding hospice. It's less clear now than we expected it to be whether hospice is the right way to go. Some treatment options that have worked well recently (like IV hydration) would be off the table, other things that might help would be more available (and doable from home). We'll probably let this simmer while we see how things go the next couple days and as we learn more about the differences between palliative care and hospice care.
C is for Clear liquids
Also around noon today, Penny's diet was changed from "nothing by mouth" to "clear liquids". She had some broth and some jello, which seemed to go OK, and she was feeling pretty good early this afternoon, but a little sleepy from all the medications. Still the doctors wanted to take things slowly (more below).
G is for Gastrostomy
Today we used the G part of the G-J tube for the first time. As expected, it worked perfectly. This can be used to release pressure in the stomach to counteract nausea, especially nausea caused by a blockage or partial blockage. It's a far more comfortable option than an NG tube, which is inserted through your nose. Penny is glad that she has likely had her last NG tube inserted.
N is for Nausea
Unfortunately, the combination of the G-tube plus anti-nausea meds has not been sufficient to combat waves of nausea this evening. So oral intake has been suspended while we try to get on top of the situation.
I is for Ileus
Long-time subscribers will remember this word. Ileus refers to "the intolerance of oral intake due to inhibition of the gastrointestinal propulsion without signs of mechanical obstruction. The diagnosis is often associated with surgery, medications, ..., or severe illness." Check, check, and check. It isn't clear yet whether the difficulty moving things along is due to the surgery, the medications, the start of another blockage, or something else.
J is for Jejunostomy
We haven't used the J part of the G-J tube for nutrition yet. We'll see what the doctors have to say about this tomorrow, but I'm guessing the nausea this evening will make them cautious about getting started.
We have been able to use the J tube for tylenol a couple times. Larger pills are hard for Penny to swallow, especially when she's feeling nauseous. But they can be crushed and mixed with water and given through the J tube. This seems to working smoothly.
D is for Discharge
We haven't had a conversation about possible discharge dates yet. Given the nausea this evening and how little she has eaten yesterday (nothing) and today (a bit of jello and some broth), I expect it will be a couple more days at least. But we'll see what the parade of doctors has to say tomorrow.
Comments
Alisa Tigchelaar: Thank you so much, Randy, for helping us know how to pray; praying the letters you provided, one by one, with dear Penny 💗 and the family on my heart. Especially that the next bigger steps will become clear, that Penny's pain will go away and that she will be able to get the nourishment that she needs without nausea.
Barbara Bjelland: Praying for you two now.
Susan Langeland: Thanks, Randy. Praying tonight and tomorrow the pain quiets down and goes away. I’m glad to hear you are asking questions and comparing palliative care and hospice. I pray God will guide you to clear answers for what is best for Penny right now and that you won’t feel pressured to make a decision before you leave the hospital.