- Acid Reflux
- Being on Oxygen
- CPR and Anesthesia concerns
- Dry Mouth - Xerostomia
- Dental Issues
- Nebulizer Usage
- Neck and Shoulder Dysfunction
- Pain Management
- Peg Tube
- Recurrent Disease
- Second Primaries
- Stroke and Vascular Problems Related to Head Neck Radiation
CPR and Anesthesia concerns
MAKE SURE THEY KNOW AND UNDERSTAND
As an OR nurse and the wife of a lary, I find it very scary when David needs to have anything done. I am lucky if he comes to my hospital, in that I can speak to the staff looking after him and ensure they fully understand his different anatomy. Most are well informed these days as I've been talking about him for the last 2.5 years. Even so, I always make up a show bag ready for his procedure. It consists of a round baby resus mask, a flexible reinforced ET tube, a trach mask, a catheter (in case they pull his prosthesis out). Not everyone has the luxury of being able to do that though, but you can still request to have those items available should they be required.
I have laminated posters that I printed out that live in his grab bag. If he goes to the ER for any reason, I stick them on the wall. If he gets admitted to the ward, they get stuck on the wall there. They consist of the difference between a tracheostomy and laryngectomy, an anatomical picture showing the airway, a sign saying "my nose is just an ornament. Please apply oxygen to my stoma. That's the little hole in my neck", CPR for neck breathers, and a few others. Every single person that cares for him in the ED or the ward, I go through absolutely everything with them regarding his airway and then I get them to repeat it back to me. Last year he had to go for a CT scan. I went through the usual "in the event something happens, intubate via his neck. DO NOT put ANYTHING in his mouth or nose. Forget they are even there" with the radiographer. It felt quite disturbing at first, saying that kind of stuff, but it doesn't bother either of us now.
It's surprising the difference it makes having the posters up. People actually look at them. They really look at them and take notice. It often encourages them to ask questions. Even people who aren't looking after him come and ask questions, which is great! The more people that ask, the more people that know.
It still scares the carp out of me though because I can't be there 24/7 advocating for him. David has a very normal sounding voice, which could easily make people forget that he doesn't have a larynx.
For those facing a procedure, ask to speak to your anaesthetist before surgery day. You need to know they fully understand. Even if it's at the hospital you had your laryngectomy at, don't assume they know. Some questions you could ask:
Do you understand the difference between a total neck breather and someone
who has a tracheostomy? Please explain the differences.
How would you administer oxygen to me?
If I need to be intubated, what type of tube will you use and where will you put it? (The type of tube should be a reinforced, flexible endotracheal
What would you use to bag and mask me? (Ideally a round size 1 neonatal resuscitation mask, or a paediatric mask turned sideways) You can even throw in a trick question......What will you do in the event I have a laryngeal spasm? If they go through the protocol for that, ask for a new anaesthetist because it is impossible for you to have a laryngeal spasm. It means they haven't listened to anything you've said or asked.
I have looked after a few of the local larys when they have come in for a procedure. I made a point of seeing them before, letting them know who I was and that I was married to a lary. You could see the look of relief on their face. I also reassured them that everything is set up for them and everyone in the room knows how their needs differ from everyone else. The ones with an EL were allowed to keep it on them. There was never any question of it being taken away.
I'm hoping that as of early next year, my local hospital will be the most knowledgeable when it comes to knowing about larys. David is starting work there in January and will be in a role where he will come in contact with pretty much every person in the building. Knowing how he can't shut up, absolutely everyone will hear from him!
TL:DR explain, explain, explain and explain to the staff, over and over and over. Get them to repeat everything back to you so you know they understand.
Jane (Wife of David - total laryngectomy,
bilateral neck dissection 7/7/16,
One of the mistake made often is that the healthcare professional confuse being a total laryngectomee, with having a trach. With a trach patients can often breath both through the mouth and the Trach. The other thing to consider is that they deal with normal patient day after day so it is automatic for them to think we breathe through our mouth. It is a very easy mistake to happen and it has happened to me. That is why it is so vitally important that we make sure they understand. I always request to meet with the anesthesiologist prior to any procedure even if they do not feel they will be putting me totally under. I also discuss with them that if I do not have my EL, I will not be able to respond to them. I even do this when I am going through security at the airport. They are always understanding and supportive to me, and thank me for bring it to their attention.
Seattle, WA 2010
Also check in the General Information/ Free for the asking section to find helpful cards and information that might help when in the hospital or other times.
New Video from Mayo clinic 1/2010
CPR METHOD, NO MOUTH TO MOUTH AND WORKS
BETTER. ANYONE CAN DO AFTER SEEING THIS ONCE!
Watch this video. Have your caregiver watch it.
For reading material from Mayo
Other videos and reports on Hands-Only CPR:
One of the best I've seen.
Dave in Florida
One of the best I've heard. Stayin' Alive!
ABC - 10/18/10 Excerpt from GMA - Interview
AARP - You Can Save a Life
By taking 60 seconds to learn hands-only CPR — now
HEART.ORG - CPR & First Aid News - List
About.com - Article
Newsweek - The Shifting Science of CPR
There is a video that explains how to provide urgent
respiratory care to laryngectomees You may want to shared it with the local EMT and
Emergency Room staff.
This video is also on DVD and my father got a free copy of it from Atos.
EMERGENCY RESCUE BREATHING
1. There are two booklets available free of charge from the IAL. These booklets should be requested and given to local Emergency Personnel -- both Emergency Room and First Responders. They are available in both English and Spanish and can be downloaded in Adobe Acrobat format.
2. We had our monthly support group meeting where I had an RN come to speak to us about hands-only CPR.
Prior to our meeting, I read an article that the American Heart Association gave new recommendations on giving CPR. This is good news for laryngectomees as it is HANDS ONLY.
A bit after that announcement, I saw an article in our local newspaper that said the American Heart Association was offering a day of free classes at our Brewers Stadium, and also offered a free CPR kit, and a tour of the stadium.
My husband I attended this class. The first thing we had to do was open our kit, remove the blow-up dummy, and blow it up. Well, that left ME out right there! My husband blew it up. But I’m sure if I had gone alone, one of the instructors would have blown it up for me. I explained to the instructor that I can only do hands-only. They were teaching the traditional way, but she showed us how to do hands-only after we watched a video that was also provided in the kit.
I thought all this was such a good idea, that I contacted the American Heart Association, and was referred to the hospital which also helped sponsor this free class at the stadium. The RN came to our meeting, demonstrated how to do the hands-only CPR, then we each had the opportunity to practice with the blow-up dummy.
The RN also stated that the rate of chest compressions is about 100/minute. If you remember the movie “Saturday Night Fever” with John Travolta, there’s a song in the movie called “Staying Alive” by the Bee Gees. The RN said she will often play the song when she’s having a class for the people at the hospital that she is training.
Class of ‘96
2013 IAL Conference EMT Training
During the IAL conference in Spokane, WA in 2013, a new training program was created. It was to help Emergency Medical personal understand the concerns and needs of a laryngectomee in emergency situations. The program has become a part of the IAL conferences across the country. The following 3 videos have been put on YouTube by the Spokane Fire and Rescue, from that training session. The intent is to share them with anyone, to increase awareness in emergency situations. You can download them from YouTube and put them on a CD to share with your local Fire Departments or medical personal that may not have experience with laryngectomees.
Ed Chapman of Richland, WA was also very instrumental in creating this program. He also has the operating procedures, algorithms and reference material that Spokane County adopted for their medical/first responder personnel. He can be contacted through his email in the members list.
The first video, Laryngeal Anatomy, is presented by Brian Mitchell, DO Spokane Ear Nose and Throat. This highlights the understanding of anatomy of a laryngectomee.
The second video, Laryngeal Communication Methods, presented by Brian Shute, Ph.D., CCC-SLP. This highlights the limitation of a laryngectomy for communication in an emergency situation.
The Third video, Laryngectomies in Distress, is presented by Susan Bruemmer, M.S., CCC-SLP and Tamara Drapeau, Paramedic-FTO. This video helps to understand other concerns and problems a laryngectomee may face in an emergency situation.
For suggestions, contributions, corrections or questions about this section, please contact: