A little bit ago we had a conversation with one of the doctors -- the one who had been most optimistic yesterday. He is no longer as optimistic. We have bad news on pretty much all fronts.
Infection. The infection in the blood is a resistant strain and there is an abscess near the GJ tube site. Penny is being treated with several strong antibiotics, and is doing well at the moment, but we were told this could change quickly over the next 24-72 hours.
Tube feeding. Surgical oncology was the first to bring this up, but now everyone seems to be on board with the diagnosis that the cancer in the abdomen is squeezing against the intestines and that this pressure will only increase. We are already seeing signs of a partial bowel instruction that will likely get worse and render the feeding tube, which already problematic, nonfunctional. This explains the challenges we have had with tube feedings for some time. For now, we have suspended the tube feedings.
Bleeding. We have indications that there is more internal bleeding. Penny is getting her third unit of blood currently and her hemoglobin is still below 6. This adds risks to other possible procedures as well. We expect to get a fourth unit of blood this afternoon.
Low blood pressure. We've been working hard to keep her blood pressure up, but there have been a lot of ups and downs with blood pressure. When it is lowest, she can't have pain meds, which leads to increased pain. It is also associated with an elevated heart rate, fatigue, lightheadedness, and just not feeling very good.
GJ tube. Managing the tube site has been a bit of a struggle, but there are no major bad signs there. One thought is to replace it with a G-only tube which would likely do a better job at draining the stomach. We will be consulting with interventional radiology about the feasibility of replacement and also whether they can drain the abscess at the same time.
Nutrition. Nutrition remains an ongoing problem. The tube isn't working well. Oral intake is challenging, and much of what she eats is lost through the G-tube (and around the G-tube). We've been monitoring and repleting various electrolytes most of this week. TPN (IV nutrition) can sometimes be an option, but it is contraindicated by the infection. (Basically, putting nutrition into the bloodstream while you have an infection just feeds the infection.)
Heart. Several of these things can have negative impacts on heart function, so she's been on a heart monitor all week. So far no red flags there, but it remains a concern.
Given all this, the relatively few options available to treat them, and the risk that some of the treatments might actually do more harm than good, we will be spending the afternoon and evening figuring out hospice care options. The biggest question will be whether it is reasonable to attempt in-home hospice. That has always been Penny's preference; we just need to see whether it is feasible given the amount of care she might need.
The goal for today is to try to get her in as good a state as possible before any procedures (like replacing the GJ tube) and/or heading home (if that is possible). In the meantime, we are hanging out at the hospital with our GR kids. Somewhat surprisingly, Penny is feeling pretty good so far today (relatively speaking). I think the doctor we spoke to this morning was surprised to see her looking as good as she does given all that is going on.
We've known that this phase was eventually going to come, and it seems to have arrived. We'll probably have some hard days and tough decisions coming, but we hope we can enjoy some time together as well.
Comments
Lynne deBenedette: To both of you, much love, and I'm so sorry things are so complicated to manage. I'm glad you all in GR are getting to spend time together, and that Penny felt not too bad today. Randy, as always, many thanks for writing such detailed updates. Praying that you can find a version of hospice care that lets you have time together, and sending a big hug to both of you, and to the kids.
John Ferdinands: Very sad to hear this. We keep praying that Penny will be relieved of pain and nausea. Randy, please say hi to Penny from both of us. The Lord bless you and keep you both , be gracious to you, and give you peace. Esther and John Ferdinands
Susan Langeland: We are lifting your needs for comfort, courage and healing from infection to God the Father and Christ Jesus, our peace and hope. We love you, Penny and Randy.
Scott Vander Linde: Praying for pain relief, comfort, and space to just be with each other and your kids in the face of the difficult decisions. Love you both!
Sara Vander Bie: Continuing to pray, Penny and Randy. Echoing the chorus of prayers listed here, and praying also that you may rest in Christ's embrace as he (such a mystery!) holds all things together.
Heidi Rienstra: Bob and I join the chorus that is lifting you all up in love and in prayer. May God’s peace surround you. The Lord’s mercies are new every morning.
Teri Warners: Holding you both and your dear family close in our thoughts, hearts, and prayers.
Pamela Plantinga: Dear Penny and Randy, We are so sorry about all this bad news, and we ache with you. You are very much in our hearts, on our minds, and in our prayers as you make these hard decisions, and we hope for additional days when Penny is feeling pretty good, so you can spend meaningful time as a family.
Alisa Tigchelaar: Pam put it so well, dear Penny and Randy. I echo her sentiments and wishes for you and your family. (Thanks, Randy, for finding an alternative to Post Hope, too; it was, indeed, not working this week on my end.) Much love. 💗
Alex Vandertol: We continue to hold you in much prayer.
Mike Borst: I am sad with you, and I pray that you will find a way to get Penny home for hospice care. Thanks for the email - I had been wondering why there were no Post Hope posts for a couple of weeks. Give Penny and yourself a big hug for me!
Barbara Bjelland: Thanks for the update and we will continue to hold you in our thoughts and prayers. I am sending a "virtual hug" to Penny who is always so compassionate and caring for others. Penny, may you continue to sense a deep, deep sense of the love and peace that pass understanding, as I know you already do.
Dawn Mulder: Praying for you both along with your children. For your conversations with hospice and clarity around where the needed care for comfort might happen(hoping for home) Sending love, prayers for peace and grace and comfort.
Kimberley Carlos Belez: We are praying for you both, and the kids as well. We love you!