Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I sure am not taking sides but as a patient and a caregiver, I would opt for the PEG as well, based on surgery and this being a recurrence. I had one and still lost about 80 lbs. I had extreme nausea even tube feeding and ended up with TPN (IV) feeding for 6 months. Likewise, I had 3 bags of fluid daily for 6 months and the portacath was my only hydration source that worked. I'm not sure I would have enjoyed a tube hanging from my nose or taped to my face.
The important thing is that with or without is doable so maybe a discussion with Charles might help him get more on the team for his care. You've done great getting him on board...take that as far as it will go.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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