Hi Jennifer, this is certainly a daunting prospect isn't it? But it is very doable and is so much better than the alternative.
My Husband Kris had this surgery 3 years ago, March 2012. He was 60 years old at that time We were both terrified. However, we tackled this head on and got on with it. Kris is alive and well today.
This was brutal surgery. Kris had to return to theatre on Day 3 to fix a leak in the internal suture site. We had been warned that this could happen due to the previous radiation Kris had had and therefore the poor healing properties of the tissues there. After this, really he had no big setbacks. The tracheostomy tube was removed on about day 5 . He used a humidifier in the hospital to keep secretions moist and easy to cough up. I really recommend that you get a nebulizer. Kris nebulised saline at least 4 times a day for the first 6 months. This is so important to add moisture to the lungs and to keep secretions moist , and easy to cough out. Now, Kris uses the nebuliser every morning , more often only if he feels that he needs it..
Kris spent 4 weeks in the hospital - but our health system in New Zealand is quite different to your own.
Recovery was long and slow. He was very tired for at least the first 3 months and needed me to help with most activities of daily living.
Due to the bilateral radical neck dissection , Kris had many difficulties associated with lifting his arms. Such as dressing himself, driving etc. do make sure Mum gets early physiotherapy to offset this.
Showering was of course a problem. How to stop the water pouring in the Stoma? The Stoma is the permanent hole in the neck left after the Laryngectomy. In the early days I held a flannel over the hole while he showered. He soon discovered for himself how to shower without getting water in, he just tucks his chin down to occlude the hole. There are shower guards that you can buy , but most Lary's dont use them in my experience.
Get your Mum an IPad . Kris uses this to communicate. Download the Speakit app. With this you type what you want to say and then the app will speak it for you. In the immediate post op period a whiteboard and marker pen are really all you need. Kris wrote everything down, he really did not want to use any technology for the first 10 days or so. Some recommend a Boogie Board, check out Amazon or google to find information on this.
I would also ask the Team about communication post surgery. Kris has a TEP - a Trans Esophageal Prosthesis. This was inserted 6 months post surgery. Although it is not perfect, it does work for Kris and our Family in that we understand most of his speech
There is so much I could say, but please check out the following websites for great information.
www.webwhispers.orgLary's Speakeasy Laryngectomy Throat Cancer group On Facebook
Strictly speaking a Laryngectomy. On Facebook
Laryngectomy Support. On Facebook
These sites give wonderful supportive help for Laryngectomees and I have learnt a lot from them.
Issues around the Total Glossectomy are best understood on this OCF Forum.
Kris is doing wonderfully well. He lives a full and independent life. Although he had to retire due to communication issues, he is busy keeping our 3 acre homestead in shape, does online editing in a voluntary capacity and educates himself with online Uni papers. Life is different, but good.
Please ask me any specific questions you like. I am more than happy to help and advise where I can.
Tammy