My husband David had a total glossectomy w/free flap reconstruction from his thigh and a selective neck dissection on 4/12. He should be getting out of the hospital this Tuesday. The recovery has been no piece of cake, but not as bad as I anticipated it would be. Of course, he needed a tracheostomy. He's still got quite a bit of swelling so he will be going home with the trach. It is uncuffed and he has a Passy Muir valve to practice speaking. He can breathe through his nose and mouth with the trach hole closed off but it's still tight.

Here's where the question(s) come in. The ENTs can't say for sure when the trach is coming out. Of course I understand every patient is different and how long swelling lasts varies from person to person. David has had his neck fully radiated (just over 5 yrs ago) and I understand that can create issues with slower healing and more swelling. They have said that he may possibly need to keep the trach in until after radiation treatment if he requires it (waiting on tumor board meeting Thursday, but it seems to be a given that more radiation will be recommended). They think this may be so b/c he's been radiated before? Sooo...how does this sound?

David had cancer of the oral tongue and it extended into the floor of his mouth forward to the mandible this time around. However, his lymph nodes were clear this time and he only had levels I-III removed. I talked with the nurse at HUPTI (Hampton U. Proton Therapy Inst.) when giving her an update about David (he sought proton therapy as an option before realizing surgery was inevitable so he's already a patient there) and she said the RO would be better able to determine whether he would still need the trach b/c he makes the determination on what areas are to be radiated and how much.

And another question...when should we expect speech/swallowing therapy to start?

- Melodie

Melodie, I suggest talking with your husbands doctor about when David is able to start working with a speech therapist. His doctor would understand the entire situation and know how he's doing with his healing.

Ive seen some patients get sent home from the hospital with their trach. Most are able to get it out prior to being released. Make sure you check with the hospital about having a visiting nurse to come out to help with the trach. Most insurances cover this but too often if the patient/caregiver doesnt specificaly askabout a visiting nurse they dont get one. Ive had visiting nurses many different times and found them to be very helpful. Itm sure it would be a huge relief to have a professional check in on your husband a few times a week to ensure he's doing ok. The trachs are not difficult to take care of but they do require work and frequent cleaning. I too had the passey muir valve type of trach and was able to talk much easier.

Best wishes to you both!

When the surgeon came by early in the morning for rounds I asked about when speech/swallowing therapy should start, and he said when David isn't using the high flow concentrator and is comfortable using the Passy Muir valve. David is having such a horrible time with dryness and was having a bad time with thick, excessive secretions and wasn't getting any relief with the cool mist from the little hood that sits over the trach tube opening. So, RT got him the high flow.

I'll ask about home nurse visits and/or possibly an RT checking back in. An RT delivered a compressor, suction machine and supplies to our house earlier today and showed me how to use the machines. I'm hoping and betting on breathing issues resolving themselves once David's home so he should be fine switching back to the cool mist. The air quality in the hospital is the WORST - it's VEEERRRY dry. I've had issues with it myself staying at the hospital with my husband and even the surgeon admitted it's something they (the docs) deal with when on call and have to be in the hospital long periods of time.

Keeping the trach "just in case" he has radiation seems excessive, especially since he didn't have throat cancer. The surgeon thinks that between being previously irradiated *and* having a large flap reconstruction (David had his entire tongue and floor of mouth reconstructed) that he's at risk of inflammation causing airway obstruction during any subsequent radiation. David is home today and has no trouble breathing through his nose and mouth when the trach hole is closed off. If the specter of further radiation wasn't out there, his trach would be out and he was told as much by the ENT residents (he had his surgery done at a teaching hospital). They are waiting to hear what the tumor board will recommend. David had perineural and lymphovascular invasion, so everyone expects at least further radiation to be recommended. David is going for proton therapy if he gets any more radiation.

(Nearly?) Everyone who has a total glossectomy will require radiation due to advanced disease and high risk of reoccurrence. However, I'm having a hard time finding where keeping a trach in place long-term is normative, even for repeat cases. David still has his larynx and some of the base of his tongue. He can swallow and speak, even if his articulation isn't great. He has a PEG as well, and we fully expected that to stay for a while.

So why am I posting? I know no one here is a doctor and can give medical advice, only personal observations and experiences. If anyone here kept their trach for a long time after a total glossectomy or large oral cancer surgery and reconstruction I'd like to hear your personal experience, particularly if you still have your larynx. We did not go through a CCC for surgery, though we did go through a medical school ENT department. David's surgeon is excellent and the residents he precepts are a fine group as well. The reason we went local was because time was of the essence...I haven't told the full story of David's reoccurrence and how his original oncology team dropped the ball; I'll save that for another day, another thread, another forum category.

Thank you for reading. I'm happy to report David is recovering amazingly well and this trach tube is "just another thang."

I'm happy to report that yesterday David had his appointment with the surgeon and the tracheostomy tube was *FINALLY* removed! He's been talking regularly for more than a week *and* drinking water and Boost by mouth for nearly a week.

Thanks for the update!!! Im sure you both feel a huge sense of accomplishment with saying goodbye to the trach. Keep up the good work!!!