Penny remains in the hospital. Consensus is that she can probably return home roughly 24-48 hours after we are sure there will be no more procedures during this stay.
The tube has been the major issue the last couple days. Penny continues to have output from around the sides of the tube. We've needed to change the absorbent dressing in that area every 2-3 hours around the clock. Over the last few days the dressing routine has evolved and improved, but it is hard to get improvement to the irritated skin as long as things keep leaking. Overnight there was a small amount of output from the actual G tube, the first in days. We're not sure just what that means, but it is movement in the right direction.
Interventional radiology has Penny on a waiting list and plans to upsize the GJ tube, today if they can fit her in. The hope is that a slightly wider tube might create a better seal and reduce the amount of leakage around the tube site. There is no guarantee that this will work, or how long it will work. But everyone agrees that it is worth trying.… As I was typing that last sentence transport came to bring Penny down to IR. That seems to have been a surprise to everyone on our floor, but we're glad it is going to happen. I'm resuming this from IR where we are waiting for the procedure to happen. Sounds like the procedure will be done by Dr Knox, who did the original (and so far most successful) placement.
We have continued to do daily tube feedings, but at a slower rate and for a shorter time than we were doing at home. Typically, Penny has managed to get 10-12 hours of feeding in before become too uncomfortable to continue. At our last palliative care appointment we discussed with Dr. Rausch that this it is not uncommon for tube feedings to become gradually less well tolerated. We're curious to see how things go once we are back home.
Hemoglobin levels dropped into the 7s yesterday. After another blood transfusion, they are over 10, the highest they have been since we got to the hospital. It's likely that there is a slow bleed somewhere that causes the hemoglobin levels to gradually fall. But if this can be managed with a blood transfusion every week or two, it sounds like the doctors would be reasonably happy with that, and continue with the blood thinners. Before going home, they want to monitor her eliquis for roughly 24 hours. The balance between risks of blood clots and bleeding will be something we continue to monitor.
Added to the mix this week has been some fluid retention -- nothing like what was happening due to the blood clot, but we are monitoring this situation as well.
There has so far been no knitting this stay at the hospital. Thursday and Friday, Penny wasn't feeling great. She declined her walks and didn't even order food. Yesterday she felt a bit better for a few hours in the afternoon and did a 2-lap walk around the floor. That was followed by a few hours of feeling less well (more pain and nausea), and then the evening was somewhere in between. She ordered more food than she ended up eating, but had a few bites of this and that. After a pretty good night's sleep, we were just preparing to another walk when transport showed up.
The last couple days we have had several conversations about the transition to home care, including another conversation with Corewell Hospice yesterday afternoon. We are still sorting out what would make the most sense, but probably won't decide about whether now is the time to transition to hospice until we see whether the tube upsizing has a positive effect.
As usually happens during a hospital stay, Penny has gotten weaker. This is a result of moving less while in the hospital plus whatever condition led to the hospital stay in the first place. We expect that, at least at first, she will require some more assistance when she returns home than she needed a week ago. She's been doing her walks with a walker, for example.
Penny was just wheeled away for the procedure. We probably won't know until later in the day (or later) how much it helps.
Comments
Susan Langeland: Very thankful to hear interventional radiology has already shown up! I’m praying the Gj tube upsize happens today and is very successful at its job and also will prevent leakage and allow for Penny’s skin to heal. May God grant you peace as you wait, Randy.
Alisa Tigchelaar: Thank you for the update, Randy. Glad with you all that Penny will get her GJ tube upsized sooner rather than later and praying now both for a successful procedure and for all the other things you've shared. May you feel God's presence and love in concrete ways today. Much love. 💗
Marie VanderLinde : We are praying for improvements on so many levels and wisdom. We send our love!
Barbara Bjelland: Praying for specific things you mentioned to be effective and for healing, peace and hope. Would Penny like visitors in the hospital or at home? Here are a few quotes from writers who "re-enchant the universe" with God's goodness and love. Madeleine L'Engle wrote about reading to a relative in pain, so maybe Penny will be comforted by listening to some beautiful words: In The Magician’s Nephew, Digory and Polly look up into Aslan’s face. Lewis writes: The face seemed to be a sea of tossing gold in which they were floating, and such a sweetness and power rolled about them and over them and entered in to them that they felt they had never really been happy or wise or good, or even alive and awake, before. And the memory of that moment stayed with them always, so that as long as they both lived…the thought of all that golden goodness, and the feeling that it was still there, quite close, just round some corner of just behind some door, would come back and make them sure, deep down inside, that all was well. I like having twinkle lights around the house, all year round. These tiny lights lift my spirits and point me to the One True Light in Christ. They remind me of the star shimmering over the dark clouds of Mordor, in Tolkien’s (Return of the King) Lord of the Rings. When Sam was stuck in Mordor on a dark night, he looked up and saw a star.Tolkien writes, “The beauty of [the star] smote [Sam’s] heart…and hope returned to him…the Shadow was only a small and passing thing; there was light and high beauty forever beyond its reach.” Love and hugs, Barbara Bjelland
Patricia Boer Fischer : Prayin 4Y'all Randy, including the Doc's, Penny, Family & Friends !!! May Our Heavenly Father Give Penny Comfort & Y'all a Peace during these times & procedures!! Give Penny a BIG ol-Hugg's from Me, Thank-U So Much,, w Lots of Love ❤️
Mary Hulst: So many things to keep track of! Glad for good care, and praying for relief.
Glen Boer: Keeping you both in our prayers
Sara Vander Bie: Praying for you, Penny and Randy!