Lilbit Update

Posted by Errol, Alumni Mentor @duvie, Apr 7, 2018

Hello Everyone,
For the past week she has been having soreness of her upper gums. She has Nystatin prescribed to her last year after being discharged which shortly after developed a burning mouth considered to be caused by antibiotics given to her during her stay. This past week she started using the Nystatin again and even though it seemed to help for some strange that Drs have not figured out yet, her head started burning as she described, like on fire

Early Friday morning was when she started mentioning her head burning. As she tried to sleep she would moan and eventually let out a yell, then want help to sit up. This went on for over an hour. Realizing it might be helpful to sleep on an incline and not having a hospital bed which she refused, I suggested possibly pulling a recliner into the bedroom. She agreed and went to sleep occasionally getting up to potty, I slept across the foot of the bed to be close enough to hear her if she needed help. She woke up fairly normal not complaining about her head. Still swishing the Nystatin periodically.
Getting into the evening hours and not being able to eat hardly anything including soft scrambled eggs started complaining about her burning mouth and head again. This time family was there and her moans and yells began to become frequent talked her into going to the hospital.

By the time the ambulance came she could hardly stand and slapping the side of the gurney mattress. They whisked her away to the hospital.
I arrived about 30 minutes later and wasn't much better since they hadn't given her anything for pain or anxiety yet,

They did a Cat scan but we haven't heard of anything showing up along with x-rays. I had left to go get a small fan at the house to keep her cool. When I returned I find they decided to place her on a ventilator and asked the family to wait in the waiting room. Later a nurse came and said the Dr wanted to speak to only a couple of us. The Dr informed us she had been diagnosed with heart failure and renal failure and was sedated.
Early Sat morning they moved to ICU. She is being given Amiodarone to help her heart but which is not good for the lungs, along with hydration fluids.
I just was informed that she also has a sepsis infection. Her lungs are in bad shape and respiratory therapist informed us that Lilbit may not be coming off the vent this time.

Sorry for the long detailed report but I felt maybe some of you may be able to give some information or suggestions on certain aspects of what she is going through or things I could discuss with nurses as well as Drs. Any help would be greatly appreiiated.

Interested in more discussions like this? Go to the Caregivers Support Group.

Errol I am sorry for your loss . Hang on there She is in a better place now

REPLY

Hi Errol @duvie
How are you doing? If you're experience is similar to mine, the hectic days of organizing arrangements, funeral, family visits, paperwork and more is starting to slow from a foggy, frenetic pace of these things have to get done to finding yourself alone with your grief and emptiness. It can hit hard. While I can't fill that void, I just want you to know that you've not alone. There are a couple of discussions here in the Caregivers group about grief and loss that you might like to read and join in.
- Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/
- Love and Caregiving...https://connect.mayoclinic.org/discussion/love-and-caregiving/
- the grieving process https://connect.mayoclinic.org/discussion/the-grieving-process/

No pressure. Do what is right for you. I just want you to know that we're all here and thinking of you every day.

REPLY

Hi Errol @duvie
I thought I would check in to see how you are doing. All of your mentor and moderator friends are here for you if you need a virtual chat and cup of coffee.
God Bless,
John

REPLY
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