I am going to Mass soon and I’ll be praying for you and your daughter. Say this prayer if you like: “Mary, Mother of Jesus, be a mother to me now, make me [and Stephanie] better.” It was a prayer my husband received from Mother Teresa of Calcutta that I was to pray.
Very Urgent Prayer Request
Please read the updates on the thread and post your prayers to Concerned.
Thanks and God Bless
Prayers for Stephanie.
My heart aches for you and Stephanie.
Lord I lift them up to you, ask that you comfort and keep them, give the Doctors divine wisdom and knowledge in dealing with this for your glory.
Ask or demand a reintubation with feeding tube until the
pneumonia gets under control. Ask for a peg(tube placed into the abdomen) tube for feeding. Once the pneumonia gets under control, get her weaned to Bipap again and don’t allow oral feedings again until she is a month or two stable and can be weaned off Bibap so that she only needs it at night. She can be fed and hydrated through a peg. Even regular food can be ground up and pureed/slurried thru a peg tube. I have been an RN for 23 years, working in an ICU currently and I’ve seen this scenario constantly. Get a lawyer and speak to administration if the doctors won’t listen. Change your pulmonologist.
What I don’t know are what are your daughter’s other conditions. You mentioned seizures, is she disabled in any other way?
So let me give you the plan again so it will give you a place to start.
1. Pray and get support like you are doing now.
2. Demand a peg and reintubation until the pneumonia is under control, ask for Precedex sedation and/or try to keep sedation light as a bowel shut down is not needed at this time.Ask for Reglan to help with gastric motility. Hopefully the pneumonia is still at a curable state with minimal lung damage at this time.
3. Watch that suctioning and pulmonary toileting(percussion and vibration...some beds do this) is being done at minimum every 2 to 4 hours. Mouth care and teeth brushing ever 2 hours is also very important as the mouth breeds harmful bacteria that causes pneumonia as well as general sepsis, if this care is not done. Ask the nurses to show you how this is to be done as it will help you feel like you have some power and it will take some off of the load of the nurses.
4. There is a practical limit to intubations as they wear away at the oro/pharyngeal linings so even if they reintubate, you have about 10 days to 2 weeks before problems start showing up, including permanent damage to the larynx, ulcerations, abcesses, and bleeding.
5. Hopefully though the pneumonia gets under control, and they can set the vents for spontaneous breathing(patient’s own diaphragm) with pressure support...then wean her to a bipap mask again, while being fed thru a peg. Since the peg is inserted into the abdomen thru to the stomach it won’t interfere with a Bipap mask seal. There are nasal masks that are much more comfortable if she is able to tolerate them as she gets stronger.
Hope this helps or at least gives you ideas for other paths to follow!
They always do that. No need to panic, it's up to you. At least that is the way it is right now, before the government takes over.
I’m praying that Stephanie survives the shoddy treatment she’s been getting, and that you get her into a facility where she will be well cared for.
What you’ve told us sounds painfully familiar to me. My father-in-law had similar treatment at a community hospital. It didn’t end well for him. I don’t mean to worry you unnecessarily, but do whatever it takes to get Stephanie to a better hospital.
God bless you and yours.
Prayers up for you and Stephanie.
My heart goes out to you. Please find the patient advocate in the hospital. If that doesn’t help, contact your church - there may be someone they know who can help.
May God hold you up through this.
In reading through your ordeal, a question came to mind...Can they not intubate her again since it seemed that was helping her? I don't know anything about medical procedures so this may be a really stupid question and I apologize in advance...
One more thought occurred to me as I was reading this sentence:
Since she has no assets or income, she is over 18 (and we could not get insurance on her), and she is on Medicaid, they have been ESPECIALLY eager to get her out the door instead of getting her well first.
Obama is so set to take over our health insurance but, with Medicaid, we already have a gov. run program. They should just fix the Medicaid system and make it work better.
Again, sending prayers for Stephanie and all of you.
I am so very sorry to hear what has been happening. Our family witnessed poor treatment of a loved one at hospitals, too, and I remember what it was like fighting doctors (and nurses).
You have been very strong. Stay strong. That means be sure to take care of yourself, too.
Thoughts and prayers for your daughter, Stephanie, for a full recovery, and for you and your family to continue to be strong for her.
A shocking and terrible account of apparent medical musmanagement. I will pray, pray, pray for Stephanie-— and for you.
Breathe deep. Four times. TAsk God’s help. hen do what you need to do.
Praying.
I am so sorry, I missed previous threads!
May the Lord Jesus place his healing hand upon her and give comfort to her family knowing that all is according to God’s plan. Bless this child and her family.
I am so sorry to hear this news and please know you are in my prayers.
Praying for all of you!!
I am in earnest prayer for Stephanie and for you.
God’s will be done. Prayers for her recovery.