| Joined: Oct 2012 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | my husband had a mandibulectomy last Wed. Day two was really rough. He was moved from ICU late last night and today was much better. We were told today that he will have to go home with his trach. They tried to take the cuff out and it didn't go well. Any advice on home care of the trach. I'm a little bit intimidated being responsible for it.
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Hi Missyp, sorry to hear about the rough time you and your husband are enduring. I don't know how to care for a trach, but there are some folks here who definitely do. I hope it's getting easier for you both!
Lynn
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Oct 2012 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | Thank you. Today was much better but he has a small hole in his flap that is causing an infection. Tomorrow am the dr will decide if they need to Re open the wound and wash it out.
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Missy, Im sorry but I dont know much about trachs. I did have one but only for 2 months. This was while I was in the hospital for the mandibulectomy and ended up stuck there for 2 whole months. I never was part of any trach care. So, I know very little about them. What I do know is very important, the trach and trach site must be thoroughly cleaned and kept clean to avoid infections.
I suggest you check with the hospital about them sending out a visiting nurse. I cant believe the hospital would send your husband home without having anyone trained in his trach care. Ive found that in many situations you have to ask for things in order to get them.
Best wishes!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Missy,
The nurses should teach you how to perform trach care. It will seem scary at first but you will be helping your husband and that will feel good. Trach care involves removing part of the trach, suctioning the airway with sterile water and the suction machine, cleaning the trach with a special kit and sterile water, and then placing the clean trach back into the opening.
It will take some practice but the nurses will make sure you are comfortable doing it before your husband is discharged. You will receive all the necessary equipment to do this at home. Just relax and know that you are helping your husband get well.
I found it very empowering to be able to assist my husband with his care. You will very likely be doing other things for him once you get home. So while he is in the hospital, learn all you can. I created a daily chart to help me stay organized. It helped me know when to give meds, do trach care, feeding, and wound care. The visiting nurse will help, but in our case, she only came twice a week. The rest of the time, I did everything.
If you want any more help, please ask. I'd be happy to email you my chart as a sample. Just PM me with your email.
Best, Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Traches aren't too hard to care for - you'll need a suction machine (so not fun) and mostly swabs to clean the area around the hole and possible dressings. They may have a nurse visit for this or teach you .hopefully it comes out soon. Hugs and blessings to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Oct 2012 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | he transitioned to a smaller trach in hopes of going home without it but he had to go back to surgery for a neck wash due to an infection. While in there it was discovered that his "native tissue" is dying (back of the tongue). The way it was explained to me was it will be like an open sore and they hope it heals over time. So he got a larger trach and will go home with it. Has anyone had any experience with this? The flap itself is doing well. I feel much more comfortable with the trach now...I guess the difference a few days can make. My husband is supposed to be discharged Monday...hope it happens..
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I hope it happens too. I also hope his native tongue gets what it needs to survive. Did they tell you what would improve the possibility of that happening? Usually something like that is related to blood flow. Hopefully they did something to improve this. Hugs and have a good day.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Oct 2012 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | We are finally home. His native tissue is still dying but they hope it heals itself. They sent him home with portable suction but he is not at all happy with it. It is very weak compares to the one at the hospital. I think I underestimated the amount I will need to be involved in his care. Now I know it's not even day 1 but wondering when I'll be able to go back to work.
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Is the suction machine adjustable? Mine was initially set at 80 mm HG and it did nothing. I cranked it up to 400 and it works great. I have a DeVilbiss. To adjust my pressure I just turn the actual dial.
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
| | |
Forums23 Topics18,168 Posts196,924 Members13,103 | Most Online458 Jan 16th, 2020 | | | |