Penny is still in the hospital, and it isn't clear at this point when discharge might be. There was talk earlier in the week that discharge could be as soon as today if everything went well, but it doesn't look like that will happen.
IV blood thinner was reintroduced on Monday. The IV blood thinner (heparin) leaves the system quickly, so it can be discontinued if there are indications that there is bleeding. So far there have been none. Hemoglobin levels have remained fairly steady in the 8.5-9.0 range (normal is 12 - 16, and below 8 is problematic).
We may be switching over to eliquis today. Eliquis can be taken at home, so this is a necessary step before discharge. The disadvantage of eliquis is that it stays in your system longer, so it is harder to respond quickly to a bleed. Heparin was used as a sort of trial run to see how she responded to the blood thinners. So far, this seems to be going well.
We've been told that it would not be surprising if a bleed recurs at some point, so this will be something we'll continue to watch for going forward. Depending on the severity, this could lead to periodic out patient blood transfusions, hospitalization, or even a stay in the ICU.
With hemoglobin levels holding fairly steady and no other indications of a bleed, most of this week has been focused on the GJ tube. Despite being in the hospital, the soonest we could get an appointment with interventional radiology was yesterday. In the meantime Penny has been dealing with pain and with leaking around the outside of the tube. The stabbing pain seems to be internal, and is often, but not always triggered by movement. Both the pain and the leaking have gotten worse over the course of the week. Since Tuesday, she has also been dealing with skin breakdown around the tube, which leads to a different kind of pain that is on the surface and more "stingy" or "burning".
Yesterday the GJ tube was replaced again. Imaging didn't show any particular problems with the placement of the previous tube, but the new one seems to be even more optimally placed, and sometimes just having the tube in a slightly different place can help. Also, the internal balloon that holds the tube in place may have been a bit underinflated. The hope is that these improvements will improve the symptoms.
So far, the improvement has been modest, at best. The stabbing pain seems to be somewhat less frequent, and seems only to occur with movement now. So that is a small improvement. There hasn't been a noticeable improvement in the leaking, and the dressing had to be changed several times during the night last night. We are using an abdominal band to hold washcloths in that area to soak things up, but sometimes even those become saturated. Early this morning they took a culture to check for a possible infection. The initial result shows elevated white blood cell counts and her temperature is slightly elevated this morning, both indicators of a possible infection. They'll keep the culture growing to see if any specific bacteria are detected.
We have resumed using the tube for feeding, but at a reduced rate. That seems to be going OK, but not as well as it had been at home.
We've also been dealing with some swelling, bruising and numbness in her legs. Nothing nearly as dramatic as when we were here for the blood clots a couple weeks back, but it's another thing to monitor. She's been keeping her legs elevated as much as possible, and that seems to help some.
And then there is the K-index. Penny felt well enough on Monday morning to ask for her knitting to be brought, but hasn't felt well enough since then to do any knitting. That gives a pretty good indication of how she's been feeling.
Comments
Susan Langeland: I am praying you are comfortable and both sleeping deeply now. I hear so many decisions and steps taken in each day- it sounds tiring to me. I’m praying God will sustain you with hope, patience and peace.
Jim and Andrea: Hi Penny and Randy, Just when it looked like you'd br prepared for almost everything at home - more complexities in your midst. This chapter sounds particularly rough; like you said, you are now grateful if the jtube only causes pain with movement! Penny is probably perfecting the art of being still; you both and staff are probably perfecting the art of efficiently and effectively managing the area around the jtube. Looking forward to hearing more of your story and hoping that the new jtube placement continues to be an improvement!
Patricia Boer Fischer : Sendin Y'all Lots of Love ❤️ Hugg's & Especially PRAYERS 🙏 Ur Waaaaay,, God Bless Ya's both!! Here if U Need Anythin, Just let Me know Thank-U!! Love ❤️ Patricia Boer Fischer
George Monsma, Jr.: Praying for further relief of pain, and good diagnosis of what is causing the problems and that a good solution to them can be found. And for peace and strength for both of you as you wait for these things.
Randall Pruim: My understanding is that the filter is a back-up plan if staying on blood thinners is problematic.
Alisa Tigchelaar: Praying today and every day for you all, Randy and Penny. Hoping that Penny regains enough strength and experiences pain-free periods so that she can resume her knitting even as you continue to move forward with determining and implementing the best courses of action. Praying that God's peace and love will embrace you in immediate and recognizable ways right now. Much love. 💗
Marie VanderLinde : Praying for you both and all those caring for you.
Mike Borst: Thanks for the update! I pray that these multiple issues will be resolved. Is there any more talk of placing a filter in the inferior vena cava to catch clots so the blood thinners don’t need to be so aggressive? My understanding is that they can stay in for years. But it is another procedure…
Barbara Bjelland: Thanks for keeping us all informed. So much suffering. Praying for healing and strength and the peace that passes understanding.