← Return to Dysphagia (swallowing issues) after intubation: What therapies work?

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@marilynckennedy

He still has some challenges in addition to PICS: his stoma still hasn’t closed completely 8 months since decannulation. He had his tracheostomy for over 16 weeks and he developed a fistula. We were going to try and see if it would close on its own but he is getting very sick of having to wear the gauze and tape over the stoma. Even though he is worried about being intubated again for the surgical closure ( and having to stay overnight in the hospital), he may decide to have it repaired sooner rather than later. As for me, I’m still suffering from PTSD. He had his valve replacement and aneurysm repair April 6, 2021 and it all fell apart within days. He had a major gastric bleed from six bleeding ulcers, had an endoscopic repair and got 7 units of blood. Then he got a deep sternal wound infection and had his sternum removed and had a flap surgery. Then his nurse got Covid and he was in isolation for 14 days. On the 13th day of isolation he had a code blue and had CPR for 12 minutes. He came back and got a tracheostomy. He had icu delirium for 60 days. He came home after 70 days in the hospital, got sepsis from the unresolved sternal infection and was readmitted to icu for another week and 2 more weeks in the hospital. In July he came home again with a nasogastric feeding tube and a pump, a trach, 24 hour oxygen, suction machine, nebulizer, a pic line for IV antibiotics and other equipment. He was terribly confused, had no bowel or bladder control and was extremely weak. All that I had was hope. Today, he is walking 2+ miles a day, off the antibiotics and oxygen, no trach, eating a normal diet and regaining his abilities. This experience changed both of us forever so I don’t know if I’ll ever feel like I can let my guard down.

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Replies to "He still has some challenges in addition to PICS: his stoma still hasn’t closed completely 8..."

Marilyn, I can imagine that this experience had changed both of you forever and that you feel like may never be able to relax or let your guard down. Have you sought help to give some time to focus on you and the resulting PTSD from all this?

This is an incredible story of hope and faith. Thank you for sharing.

Can you please share the swallowing exercises? Thanks