Need advice from doctors regarding my mother's treatment Hi,
My mother is around 70 and has been unwell for a few weeks now. I would appreciate any suggestion / advice from doctors on this forum. Please bear with my rather long post, but I don't think people would be able to help unless I gave the full picture. (Please note that I am a non-medical person and anything I mention below is purely based on my perceptions or what I've been told by doctors / their reports) Her medical history:
My mother is non-diabetic, not had a history of hyper-tension. She had a peptic ulcer operation in her younger days and was always known to have a very sensitive stomach. She had a paralytic stroke (affecting her speech, right side movements) about 13 years ago - she had been undergoing treatment for Pott's spine then. I remember her BP was extremly low when we rushed her to NIMHANs after the stroke. About 6 months later she finished her antibiotics (for Pott's spine) and did all follow ups regularly till about a year after her stroke. Later the doctor adviced that she didn't need any more visits for her condition. She wasn't suggested any blood thinners.
Wrt her paralysis, she recovered to a large extent except that her speech was not clear and was unable to quickly recollect names. Her right hand movement was also very limited, but she was otherwise quite independent. We attribute a large part of her recovery to her will power. Her current problem:
Since mid-June, 2011 her appetite came down a lot. She wanted to eat very little quantities that too bland food. One morning around mid-July, she developed symptoms of a very bad cold - lot of flem, her voice sounded very nasal. She didn't have fever. She was vommiting anything she ate/drank. When we took her to the hospital we were told that she had an aspiration pneumonia. She was immediately put on Ryle's tube feed, IV and kept in ICU for 3 days. On the 4th day they did an MRI (brain) and found the aspiration was due to a stroke affecting her swallowing. We were initially told she could recover her swallowing ability in 2-3 weeks. (The neurologist's report says - acute infarct in right lateral medulla/inf cerebellar peduncle -probably causing dysphagia/dysarthria. She was immediately put on blood thinners.) Bleeding episode 1:
They did a tracheostomy (even while on thinners) to prevent aspiration and told they could take if off once her swallowing improves. She was okay for a couple of days and the doctors even suggested we could take her to a smaller nursing home with good nursing care. Before we could act, one day during suctioning she had a lot of bleeding from her mouth. She was rushed to the OT and the bleeding was stopped . The ENT surgeon said, as such he couldn't really see where so much bleeding was happening from and that he had cauterized some bleeding sites. (She lost close to 300 ml of blood.) The doctor also showed me a marble sized blood clot that he removed from the trachea - which had caused her Oxygen level to drop badly. She stabilized in a few hours, but was kept in ICU for about 3 days for observation. They were giving her Oxygen to maintain saturation. They felt the bleeding maybe due to the thinners. The thinners were stopped and she was also given platelets to stop bleeding. Bleeding episode 2:
Back in the ward they restarted the thinners after a few days. Things were more or less eventless for a few weeks. Just as we were preparing to move her she had another bleeding episode - this time from the stomach. While the nurses were trying to change the Ryle's tube, they found blood (dark - seemed like old blood) coming through the tube. Her Haemogloben levels too started dropping. She was back in the ICU for another 3 days.
They did an endoscopy - found there were ulcerations in the oesophagus and a large bleeding ulcer in the junction of the food pipe and stomach. Again they felt this was due to the blood thinners. They haven't restarted the thinners since then, but plan to do so next week. For the ulcerations in the food pipe we were told to choose between a Freka tube and PEG tube (preferably the latter).
I chose the Freka since I was told that it was a fragile tube and also because I wasn't sure how my mother would take another surgical procedure. After all doctors advised us we had a PEG tube inserted early this week. She is stable and is being fed. She is also being ambulated - she is very weak, but is able to move around. About a week ago the doctor mentioned her lungs were now pretty clear. My concerns:
1. Is it safe to bring her home in this condition? Her secretions have increased suddenly today. Why does this happen? How safe is it to get her home given these fluctuations?
2. I have purchased a suction machine, home oxygen, water bed, etc. But I just can't find nurses qualified to handle tracheostomy/ suction, etc. I've contacted all the big agencies in Bangalore. The ones that showed up are charging heftily don't have qualified nurses, but some folks who've taken training. Doctors say the family members can handle everything by ourselves and rush her to the hospital if there is an emergency. I am apprehensive given what happened in the past.
3. Is it safe to restart the thinners especially given her history of peptic ulcer? Can any precaution be taken?
4. How does one know she is ready for removal of the tracheostomy? I am not convinced with the swallowing assessment made so far - none of the doctors have monitored the assessment. Once a speech therapist did an assessment, my mother managed to eat all the semi-solid food given to her except for the last spoon which she coughed out. The doctors say her cough reflex is bad. The other time they assessed her by giving her a spoonful of water in the ICU. But only nurses were involved. I don't think they should have tried with water anyway.
5. Isn't it possible that they remove the tracheostomy, but we still feed her via the PEG tube? We can make sure she is not given anything orally till the doctors agree to. This way we can avoid all the suctioning and the risks of having the tracheostomy. Till yesterday even her oral secretions were very minimal - so I'm assuming she can swallow her saliva at least.
6. Does a PEG tube facilitate better nourishment compared to a Ryle's tube? This was one of the reasons why we were told to go for the PEG tube. But I still find the frequency/quantity of feed same as while on RT feed.
Last edited by CBlazer : 2nd September 2011 at 01:21.
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