ALS From Both Sides

Planning for a Vent

If you have decided to go on a vent when the time comes, don't let the time sneak up on you. A planned and scheduled switch to trach and vent is stressful but an unplanned switch is worse. Even if you aren't ready to set a date, the information here can help you be one step ahead, especially if the vent event takes place sooner than anticipated. Surgical planning and home preparation can be done without scheduling anything. It is actually quite a bit like having a baby. You know that it will happen but not precisely when, and you don't wait until the baby arrives to get a crib and diapers! So here are some practical tips to help you be prepared for the day you bring home your bundle of joy, little LTV 950 or precious Trilogy.

When you meet with your Pulmonary doctor to discuss going on a ventilator, request that an ENT (Ear, Nose, and Throat) Surgeon put the trach in. It isn't as easy as Father Mulcahey, Radar O’Reilly and a pocket knife made it look. A bad trach job will be a problem that may end up requiring corrective surgery. An ER doc won't do a trach unless your face is smashed. He will put an endotracheal (mouth to trachea) tube in, put you on a vent, admit you, and let your regular doctor arrange for a surgeon/ENT to schedule the trach. If you have pneumonia, they will do the same and wait until that is under control before doing the trach. An endotracheal tube is wretchedly uncomfortable -- another reason to have a trach put in before you end up in the ER!

Assuming you are following my “Do as I say, not as I did” advice, you will also ask to meet with the ENT surgeon or his nurse to discuss and see the type of trach he will put in. Seeing an actual trach will go a long way in clearing up any confusion and be of great help later in caring for your trach. Knowing what is hidden from view makes it all easier to work with. Don't worry at this point about the brand and type of trach that will be put in. That can be changed in a few weeks during a trach change.

If you don't already have a feeding tube, this is the time to have one put in even if you don't need it just yet. Aside from being handy for a fast, minimal effort meal at times when your caregiver needs a little break, avoiding another hospital stay or even an outpatient procedure is a real plus.

Ask your doctor how long you will be in the hospital and if you will have to be sent from there to some type of facility where vent and trach care training is provided or if that is done at the hospital. This is also the time to ask about the availability of nursing homes that take ventilator patients. In spite of your planning to remain at home, if your primary caregiver can no longer do the job, a nursing home may be your only option short of discontinuing the vent. Nursing homes licensed to take vent patients are currently few and far between. Your only option may be quite far from your family.

Find out from your doctor who will be supplying your ventilator and other equipment. If your doctor doesn't know which type of vent they supply, call them and ask. Then call the company you got your wheelchair from and explain that you will need a vent tray or mount added to your chair. They will need to know the type of vent in order to get the right mount. Hash out the details of filing the Medicare/insurance claim. ventcartThey may not be able to file until you have the vent which is fine but a nuisance using your chair with out the vent mount. With bulbar onset ALS, a vent may be needed while you are still able to walk. A vent is too awkward and heavy for anyone with any upper body weakness to carry in a backpack but a folding grocery cart may work.

Expect to be in Intensive Care after surgery. You aren't going to be in such bad shape that you need Intensive Care but few hospitals have any other area that has nurses trained and allowed to care for ventilator patients. That same requirement will land you in Intensive Care for anything in the future, even a simple appendectomy.

Line up volunteers to sit with you at the hospital if allowed, and especially if you are moved to a vent training unit. The nurses are never staffed well enough to make a newly trached patient feel safe and having someone with you is reassuring even if all they can do is run out and grab a nurse.

Ask for a soft touch hand or pillow call button. Getting everyone to remember to make certain you can press it before the leave the room is a big problem though. Feel free to raise hell up the line if it isn't done. A vent alarm response will be frightening slow for panic prone newby -- and we are all panic prone newbies at first.

There is a suture on each side of the trach at first and they can get tugged on by the vent hose when you move. Moving also tugs on, moves, or jiggles the trach. That triggers the cough and gag reflexes and, although not painful or dangerous, it is scary at first and forever annoying! You can skip all that drama by taking the vent hose off the trach when you are repositioned in bed or transferred to a chair. You will be pleasantly surprised at how long you can do without the vent now that you are properly oxygenated to start with!

If you don't want to be held prisoner for a month, you may have to push. I spent over three weeks in the special care facility that was supposed to get me ready to go home, and even though I had absolutely no medical complications, NOTHING was done until the last week! I suspect that this was all due to the fact that Medicare would automatically cover 21 days and the facility wanted every dime of that even though I could have been home in a matter of a few days. Anyway, make certain there is a planned time frame for getting you home -- and that it is in writing and required reading for all RN's. Get them moving right away on obtaining your vent rather than the hospital supplied one. Schedule vent training classes for your care givers ASAP. Ditto for suctioning and trach care instructions and hands on experience for your caregivers.

Include your preferences in your discharge plan. If you don't let them know, you could be sent home with a urinary catheter still in, and on tube feedings even if you can swallow safely. You will probably have a swallow study before they will let you eat.

If you were able to talk before the trach, you will be able to talk after. It won't help with problems speaking clearly but you will be able to speak more loudly and without exhaustion. A Speech Therapist will probably want you to try a Passey-Muir Valve. Not necessary. Ask the doctor to deflate your trach cuff, wait until you stop coughing, then try to talk. If you get short of breath with the cuff deflated, the solution is to have the vent setting changed to a higher volume to make up for the air you lose with the cuff deflated. Then call someone and make them cry at hearing your voice again.

If you have been getting out of bed at home, get out of bed as soon as your doctor allows it. Don't stay up to the point of exhaustion, but getting your strength back should be easy now that you are breathing properly. You will probably be far more comfortable if you have your wheelchair brought in.

If anyone seems to think you should try being off the vent for increasing periods of time, feel free to tell them you have no intention of EVER being short of breath and miserable again. You will come off the vent just for the sake of knowing how long you are comfortable (could be a half hour or several hours), but there is no point in trying to extend your time off much less get you off the vent as they normally do with ventilator patients. Remind them that you have ALS so your breathing will never improve no matter how hard you try.

The combination of anesthesia and pain meds will almost inevitably cause constipation if a stool softener (Dulcolax, Colace, or Docusate) isn't taken daily, ideally starting a day or two before the trach is put in. It is critical that you do not begin eating or being fed through the tube until your intestines "wake up” from any anesthesia you are given during the procedure or surgery. For some reason they are slower to shake of the effects of anesthesia than the rest of the body. This applies to any procedure or surgery! There is some evidence that gastric motility, the passage of food through the stomach and intestines, is slower in ALS patients, but whether this is a direct effect of ALS on digestive muscles is far less likely than the effects of not being able to get up and walk! If you ever had surgery before ALS, you know that you will be ordered up and walking far sooner than you want to. The assumption is that it is to help you get your strength back. Not really. It is to get you breathing more deeply and get your bowels working.

If you are in the hospital during this time, your nurses should be listening to your lower abdomen with a stethoscope to hear the gurgling that signals the return of bowel function. Until then, you must not be fed. Severe problems with the intestines can occur in anyone after surgery and because of immobility, ALS patients are somewhat more susceptible.

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