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.

Colleen Young, Connect Director | @colleenyoung | Apr 8, 2018

Hi @duvie
I just found this message. I'm not sure why I missed it. In case others missed it too, I'm tagging a few other fellow caregivers and members: @IndianaScott @hopeful33250 @rosemarya @johnbishop @sandytoes14 @gaybinator @karly @concernedmtnmom @flor

Sorry for the delay in responding, Errol, just when you need to hear from someone the most. This must be so hard for both you and Lilbit, and you still have Duvie at home to take care of. How is Lilbit doing tonight? How are you?

Rosemary, Volunteer Mentor | @rosemarya | Apr 8, 2018

@duvie, Errol, I have no experience, or suggestions to offer about what to ask the nurses and doctors. I will offer the only thing that I am comfortable doing - offering a prayer that in the midst of this difficult situation, that Lilbit will be comfortable, and that you will feel peace and comfort knowing that you are with her.
Rosemary

Teresa, Volunteer Mentor | @hopeful33250 | Apr 8, 2018

@duvie, Errol

I will join Rosemary with that same prayer. You need guidance to ask the right questions and get the right answers.

Teresa

John, Volunteer Mentor | @johnbishop | Apr 8, 2018

Errol (@duvie), I wished I had some words that would help. I can't imagine how difficult it is for you. Is there anyone you can talk with there? Praying for peace and strength for you.

John

Errol, Alumni Mentor | @duvie | Apr 8, 2018

In reply to @colleenyoung "Hi @duvie I just found this message. I'm not sure why I missed it. In case..." + (show)

Hello @colleenyoung, I was beginning to think I went into too much detail for Connect. I do appreciate the concern and understanding displayed by you, @rosemarya, @hopeful33250, and @johnbishop. It is indeed a hard time for family and myself.
Drs haven't found the culprit which led to her being here. Sleeping most of time and unaware of what's happening.
Central line in her neck, wires all over, arms, hands, fingers,and shoulders swollen beyond belief. Ankles and calfs basically normal which is normally swells. Kidneys not putting out enough of the massive doses of fluid their giving her. Badly bruised from all the needles where she has been stuck frequently. Being on blood thinners helps the heart and vascular but sure cause for easy bleeding situations especially during IV blowouts. Still on a vent with a lot of thick secretions being suctioned out.
The realization of the possibility of her not going home this time it hitting me hard. As a caregiver I feel I can be trained to continue to care for her needs. However, I also know that everyone eventually gets called up to the Lord. Her priest who has been coming to the house weekly came today to bless her and the religious picture which hangs beyond her head and watches after her.
Well it's getting long. like I've mentioned before, sometimes I got a big mouth and ramble on.
Never realized until now just how lonely and helpless one can feel while sitting with a patient.
Really appreciate all the prayers being offered.

Thanks to All
Errol

Teresa, Volunteer Mentor | @hopeful33250 | Apr 9, 2018

In reply to @colleenyoung "Hi @duvie I just found this message. I'm not sure why I missed it. In case..." + (show)

@duvie Errol:

I wish you much peace and strength for whatever you will face in the next few days. Please realize that you are never really alone.

Teresa

sallysue | @sallysue | Apr 9, 2018

In reply to @colleenyoung "Hi @duvie I just found this message. I'm not sure why I missed it. In case..." + (show)

@duvie, I’m thinking of you today.

Rosemary, Volunteer Mentor | @rosemarya | Apr 9, 2018

In reply to @colleenyoung "Hi @duvie I just found this message. I'm not sure why I missed it. In case..." + (show)

@duvie
Errol, Talking to others is a good thing to do. I remember when virtual talking was so helpful to my husband when I was 'down'. You do not have to be brave, either, because my 'just being there' is what she feels.
Virtual hugs are good, too.
Hugs and prayers.
Rosemary

Colleen Young, Connect Director | @colleenyoung | Apr 9, 2018

Hi @duvie
I just poured you a virtual cup of coffee and want to let you know that little squeeze you just felt was me taking your hand to let you know I'm here. Are you sleeping at the hospital tonight or do you have to be home with Duvie? How are you managing to care for both your patients when they are separated? Do you have help coming in? How is Lilbit doing?
Oh, that's enough questions. Forgive me. I'm here if you want to chat or we can just sit and sip our coffees. Thinking of you.

juani | @juani | Apr 10, 2018

Dear @duvie, you have it in yourself, you already said the magic words: everyone eventually gets called up to the Lord. If you are able to think that this is fundamentally about Lilbit and the Lord (who knows what kind of talking they are having) and that we are mere tools conveying His will, that may help. Open your heart to His will and to His love, do the best you can and never forget that it is for Him to make the decisions. Leave your feelings of loneliness, powerless, uncertainty and exhaustion in His hands. He will know what to do and how to help you and Lilbit lovingly. Love and peace