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!
Oh I saw your other postings so I have a better understanding as to your daughter’s other issues. Still wouldn’t change any other advice I have offered to you.
Is a peg the same thing as a button?