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Mom in HVI ICU for 50+ days post open heart surgery
My mom (75 y/o) had open heart surgery March 19th to replace a valve and abrasion. She has now had kidney failure and team has taken her off CRRT and back on 5 times as HD has not had a schedule approved. Every weekend, something major has gone wrong due to, what seems like, understaffing. She also had to get a tracheostomy and a peg tube which she is tolerating . She is in delirium and it’s so hard to watch her like this. I feel lost, my family feels lost. We are losing faith in the team because during the week, things seem to improve and we discuss LTAC rehab then the weekend comes and it all spirals out. Please let me know if you’ve been through similar. I don’t know if we are doing the right things for her.
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For others reading this message, I thought I'd spell out the acronyms:
CRRT = Continuous Renal Replacement Therapy
LTAC = Long-Term Acute Care
HD =Hemodialysis
@linzer3, this must be very distressing for you and your family. I wonder if there is a patient advocate or social worker that you can speak to about you concerns for weekend care. May I ask, is your mom in an ICU unit at Mayo Clinic?
I am sorry and grieving for you all. May 2014. I was hospitalized with bacterial meningitis of my brain. Craniotomy done to remove access left temporal lobe I was septic in multi organ failure on a vent in medically induced coma. The rapid response team called 10 times. I was coded. In ICU out then back there. 30 days hospitalized. Barely missed admission to LTAC. Went to nursing home. In WC Walked out 3 weeks later. Is there a chaplain there? A patient advocate? A nurse you can talk too? Stressful time for all. Any way you can get any ST therapy to help you all cope?
I’m so sorry you went through all of that. What a journey and so glad you recovered. palliative care and patient advocacy have been involved but time to call another family meeting with them. Thank you for your thoughts and response< 3
I Colleen, my mom is not at the Mayo Clinic. We are located in PA and at a very good hospital for the most part. I am unsure if I can still utilize this group if she isn’t. Just looking for help. We will again follow with the nurse manager, care team, palliative care and social worker assigned to my mom at the hospital. Thank you for your help< 3
I would like to hear how you all are if you want to keep posting. I was once seriously ill too. Grateful to be alive today. Walking talking driving etc. I hope the kindness from this group helps. God bless .
Hi--you don't need to be a patient at Mayo to use this site of Mayo Connect! There are folks here from around the world and in many different medical systems. Stay with us at Connect and check in whenever you feel like it. Thinking of you and your mom.
@linzer3, this forum is for everyone, no matter where you or your mom receive care. You are welcome here.
I hope that working with your mom's team - nurse manager, palliative care and social worker - helps. You are rightfully worried about your mom and want the best care for her. You want to understand why it appears that her relapses are timed with weekend care. That may be coincidence, but you want to understand what changes in care happen over that period and ensure she gets the attention her medical situation requires and to know she's safe.
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1 ReactionHello @linzer3,
I am so glad you found Mayo Connect. I am jumping in here to let you know you are not alone, and @colleenyoung, our esteemed Moderator has given you great advice.
I wondered as I read your post, have you spoken to the attending physician or the intensivist attending your mom to share your concerns? I can't imagine the physician is not checking and following your mom's weekend progress and making chart notes.
Since it was just Mother's Day...I bet this was a terribly hard time for you and your family. Heartbreaking to see your beloved mom so very sick.
Moms are so important in our lives and we need them!
Keep asking questions.
Ask the social worker.
Ask the doctor.
Ask the discharge planner.
You are your mom's advocate right now and she needs you!
Be strong and courageous.
And feel free to come back to Connect any time you need to. Mayo Clinic Connect is for everyone, and we all need support during difficult times like the one you are going through.
I think it's important to speak to her doctor or the ICU attending physician...can you?
Thank you for your support and glad to know you have recovered from something so major! I will keep posting and hoping my mom makes it to rehab soon.
So sorry you and your poor Mum are going through this. I had valve replacement and repair seven months ago. I was in ITU for one week and cardiac care for another three. I feel for what you are going through and hope your Mum recovers well and gets to rehab quickly.