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 group.

Oops, I left out the word "not" when speaking about the kidneys. Suppose to read, "Kidneys are beginning to put out the amount of fluids given her which is a slight improvement but their "not" doing what there supposed to do….Errol

Thanks @colleenyoung..

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@duvie

Hello @colleenyoung, @hopeful33250, @sallysue, @rosemarya, @johnbishop, @juani, Thanks for the responses and prayers.
Lilbit is still not improving much. Liver is better. Kidneys are beginning to put out the amount of fluids given her which is a slight improvement but their doing what there suppose to do. Upper body swollen retaining fluid which means as her torso swells it closes in on the amount of spece the lungs have to function. The vent at the max for her situation. Heart struggling to provide enough blood to kidneys and probably other organs.
Last couple nights I can't seem to get hospital WiFi to work right. Sorry to have missed the Teleconference.

Hope everyone else is doing well.
Errol

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Good to hear from you Errol. Wishing you and Lilbit some rest and comfort today. Hugs from all your Connect team and friends.

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@duvie Errol:

I appreciate the update on Lilbit. It sounds like there is some improvement but still a lot of discomfort with the upper torso swelling. That must be very difficult for her to breathe comfortably. I'm not sure if you mentioned this before, but is she responsive to your presence?

Please know you are both in my prayers.

Teresa

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@duvie Errol, It's been crazy busy for me last few days. I want you to know that even though I've been silent and will be silent for the next several days, that you and Lilbit have my prayers.
Rosemary

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Hi Errol @duvie
Ready for another cup of coffee? Thinking of you and Lilbit.

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Hi Errol @duvie, I'm also with Colleen and others that are thinking of you and Lilbit…and wishing we could have a cup of coffee together.

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Hi Errol @duvie I'd like to add my sentiments to what Colleen, John and Rosemary have said. I wish you well during this difficult time.

Teresa

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My sister keeps me busy but I do keep up with your posts and pray for you and Lilbit daily.

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Hello Everyone, Sorry but I been putting it off. Lilbit passed away due to Drs with very little hope. Kept telling family she was not strong enough for dialysis.
Weak heart, lungs, and liver trouble. It's been hard on everyone. Daughter had the say-so and she decided to let her pass without pain.

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I'm so sorry to read this. I will keep your family and Lilbit in my prayers. Wishing you comfort and peace.

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Dear @duvie, my thoughts have been with you and your family. I can imagine that the decisions you had to face were very hard. I'm glad that she passed without pain and surrounded by those who love her. I wrap you with a virtual embrace and wish it could take some of your pain away. I know it doesn't but I hope it helps in some way.

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So sorry for your heart. Praying as you transition to life without her.

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