Two weeks ago at this time we were in the ER getting hydration. Here's a quick recap of the last couple weeks.
Appointments. We have averaged over 2 medical appointments per day (Monday through Friday) the last two weeks. Nutrition, palliative care, primary care physician, visiting nurse, physical therapy, oncology, hospice care (for information), interventional radiology, care coordinator... And there have been additional calls to coordinate delivery of equipment and supplies. The good news is that all but one of these has either happened at home or via telemedicine.
Nutrition. Nutrition through the J tube seems to be going well. Now that we have reached the maximum infusion rate, we have been increasing the caloric density. The new goal is to give Penny more calories than "the forumula" would suggest she needs. This is in part because she likely isn't absorbing the calories as efficiently as someone with an intact digestive system would do and partly because the hope is that she can regain some of the weight she has lost.
Hydration. We are now (finally) set up to do IV hydration at home. She's getting a liter every other day. A nurse will come at least weekly to de-access and re-access the port, but I handle the rest along with the nutrition. The last two times we hooked up hydration the flow rate wasn't as high as we wanted, so we are monitoring that to see if we can determine a cause. Other than making the infusion take longer, this isn't a big problem. Penny has also had some discomfort near the port, but it isn't clear if that is related to the port or to her physical therapy exercises (or maybe something else). We're monitoring that as well.
Weight gain. At her low point a couple weeks ago, Penny was down 40 pounds compared to last July. She has regained about ten pounds since then. Most of the calories are coming via the J tube, but she has also been eating more than she had been for a while.
Physical therapy. The physical therapist is coming twice each week. At Friday's session, Penny commented on her slow progress. The therapist replied that she was progressing much faster than would have been expected. This past week Penny did a bit of cooking. This counts as therapy on multiple levels, including physical therapy. One night she was too exhausted to eat after preparing the meal, but she has mostly enjoyed having some time in the kitchen. This was well timed since we have celebrated two family birthdays in the last week.
Hospice. We had an informational session with Corewell Hospice and discovered that the provide some services (like in-home IV fluids) that most hospice providers do not. That's a good piece of information to file away. We've established some baseline information with them that should facilitate a rapid switch to hospice care if/when that is needed.
Oncology. Our one out-of-home appointment was with Dr Chandana this past Wednesday. He was Penny's oncologist before we switched over to the START clinic for the clinical trials. (He actually works at both Lemmen-Holton and the START clinic, so we saw him a few times at the START clinic as well.) His advice was that we continue with nutrition, hydration, physical therapy, etc. and see how things look in about 6 weeks. If Penny can gain some more weight and strength and stay out of the hospital, then he will order a CT scan and we can discuss what treatment option makes the most sense. He told us about a couple newly approved standard of care treatments that we can read up on. A clinical trial might also be a possibility. He called it "a test of time."
Pain, discomfort, nausea, fatigue. None of these have been as bad this week as in recent weeks, but they still come and go. We've prepared a mobile pharmacy that pretty much follows her so we have quick access to the appropriate meds as needed.
In short, amidst the now familiar ups and downs, the trajectory of the last couple weeks has been in the right direction. Knitting has returned as a daily activity, Penny was able to enjoy some birthday celebrating, and today she was able to get out of the house to run an errand with a friend. All good things to be thankful for.
Comments
Alisa Tigchelaar: So glad with you for the blessings of "time(s)," dear Penny and Randy; praying around that right now. Thank you, God!.… and more good (ones), please. Much love. 💗
Mia Hunefeld: So glad to read of the overall good news and happy to see Penny enjoying some of her favorite things!
Mary Hulst: One day at a time applies to so much of life. Prayers continue!
Talon Rindels : Cooking, knitting and outings with friends/family really are a blessing!
Patricia Boer Fischer : Thinkin & Prayin 4Ya'll, God Bless Hugg's Love ❤️ & Prayers 🙏
Andrea Turner: The interventions, at home care, and online appointments seem to be revolutionizing how Penny’s care is experienced. Wow! And it sounds like there have been steps in the right direction!
Christopher G Moseley: Good news!