Yesterday was a good day.
One of the best days in recent weeks. Penny felt good, her diet was advanced from full liquids to essentially a normal diet, and she ate well. She wished she had some knitting along. In the afternoon, she was feeling so good that we got permission to borrow a wheel chair, and went to visit a friend who was in another part of the hospital. (The friend was pretty surprise to see us ;-) The only pain medication Penny took was some Tylenol, and see didn't require anything for nausea.
Last night was "terrible" (Penny's description). Nausea, pain, discomfort.
Today has been a less good day. Better than last night, but not great. Penny returned to taking nausea meds and stronger pain meds (just Toradol though, nothing stronger than that), slept as much as possible, and ate very little.
Nevertheless, the decision was made to go ahead with the first trial run using the feeding tube and to avoid eating for the rest of day. That began mid-afternoon. Later they hooked up the G-tube to see if that would help relieve some of the symptoms. So both the G and J tubes are doing their thing right now while Penny sleeps.
The hope is that tomorrow she can eat some and continue with the feeding tube. If all goes well, she could be discharged on Sunday. There will be some ongoing experimentation to determine the right mix of oral intake vs. J-tube feeding and to determine the best rate for the tube feeding, but we should be able to do that from home.
The current plan is not to initiate hospice care immediately. It doesn't seem that that transition has any immediate benefits. The initial post-hospital care plan going forward would be essentially the same whether or not we initiate hospice care, so we'll take a little more time to figure that out. Now that we have had our informational meeting, it sounds like we can initiate hospice care at any time within 24 hours, often the same day. The biggest differences between the current plan and hospice care seem to be (a) who provides care, and (b) what happens the next time something acute (like a bowel obstruction) occurs.
If we can avoid anything acute, the plan will be to see whether supplemental nutrition can help Penny regain some of her strength, and to see how well we can navigate the less good days at home. Meanwhile, we'll take advantage of each good day as it occurs. The knitting is here now in case tomorrow is one of the good days.
Comments
Pamela Plantinga: I'm so sorry about the pain and misery, and praying for a knitting day tomorrow. I hope you are able to go home on Sunday as planned, and that the transition goes really well.
Alisa Tigchelaar: Amen to what other praying friends have lifted up: rest tonight, nutrition and knitting tomorrow, a smooth transition home and clarity on next steps. What a sweet, sweet picture of dearest Penny and her friend! 💗
Marie VanderLinde : Two very brave women in that picture. Two saints! Praying for peace and relief from pain and nausea, please Lord.
Susan Langeland: Oh, so good to see Penny and “her friend” together! Blessings on both of them! Praying for good rest tonight and a good eating and knitting day tomorrow. Love you all.
Teri Warners: Thank you for your faithful updates, Randy, and the photo of two people near and dear to my heart. Much love and prayers for you all.
Chriss Pruim: Praying for more good days and knitting <3
Mary Hulst: Praying for you both as you adapt hour-by-hour, and hoping that the tubes do good work.