Please remember the following information is NOT medical advice. CALS are sharing their experiences and their recommendations based on what has helped them. YOU make your own decisions as to what items you choose to do at the hospital.
- Any PALS can unexpectedly end up in the hospital at any time.
- The most common reason for a PALS to be hospitalized is breathing issues, most often from pneumonia or aspiration pneumonia
- Be present in the room, at all times if possible, as an advocate. If the CALS is unable to be at the hospital at all times then find another family member or friend to replace you when you cannot be there
- Have a “To Go” bag packed and ready to go – see list below. Bring enough to last you for days if a long stay becomes necessary
Items to have ready in your “To Go” bag
- The following PDF’s printed to show hospital staff and ambulance team
- A printout of this step so you remember the items on it when you are in the hospital
- Pen and Paper or Notebook to be used to have each staff members sign in (see below)
If you go to the hospital
Print these out:
Rough Notes from phone interviews
– these will be edited and more clear
Papers for waiver to stay on machine.
Naive when was naive. Made him pass out 3x ripped mask off each time.
Nasal. Pressure. Put on machine.
Smart enough to rip it off
Princeton. I will sign on. RT and sign. Counsel’d
Local hospital now. Do cough assist in the way to the hospital.
Cannot come off machine and cannot have oxygen.
Usually let me ride in back
Do not be afaid to ask for a patient advocates. Never wait.
Itchy. Break out.
Feeding tube braking his skin
Down his throat. Brand new.
Internal piece—get the balloon part.
Nightmare. Put gauze and covered it
Never took gauze.
Lifted gauze flesh off w gastric juices
Very thin skin. Very tender. April to September to heal.
Open feeding tube, since sphincter was not working internally got on shlphincter.
Lou called for Dr. Bach.
Kept on greenery for 2 days and got bed sores.
Days John was experiencing was bc of disease progression.
Asked fir Patient advocate
Did not read the chart. Assuming. 2 days did not read the chart.
How to feed John only 50cccs at the tim.
Dr. Bach took charge.
Never leave John.
Adult Kids delivering food.
Patient Advocates complaining about
Cleaning woman bringing food.
Ask have you read the chart???
Family members take turns
Always. Had private aid at night. Hired someone.
To Go bag.
Cough Assist plus both machines.
Tried to give him some water!!!!
Did you read the chart????
Watch what people touch.
Touch the bed, press the buttons.
Wipe down. Bed after.
Oil of Oregon’s.
Start with a couple of drops in a couple of ounces of water and flushed it through.
Every 2-3 hours.
Get oxygen levels are not going up. High 80’s but maintain 94 or below. But worth it.
Work on him. Cough assist can’t maintain
Percussions and antibiotic. Pounding on front, back and side of chest.
Mixed up liquid CD couple of drops in shot glass follow direction.oil of oregano p73 dips. extract.
Opinion what worked for them.
Doctors 94. Can get it up
Kerry Rivera Healing Autism book.
Sarah good one to speak to.
Every 15 min.
Never gets hospitalized
Use cough assususehydrogen perixide sponges
Nebulizer in the morning
Saline and itrophium bromide.
Prescription. Helps open up airway.
Constricted. Few drops saline. M
Clean trache site
Change trache 2-3 months.
Inner canals every day.
While trach changed out every 2-3 min tags from ENT office.
Hydrogen peroxide mouth wash
Sponging with solution.
Toothbrush and toothpaste.
Swallow saliva. If swallowing bacteria. And aspirating and cause pneumonia.
Coughing up bad stuff and suction machine.
Over a year without hanging his trache.
Suction thing down further. Clear airway. Can touch. 1/2 inch nose and throat.
Tips for going
Hospitals Lisa Manchester
Always ask questions.
Normally don’t leave then may leave depending ding on staff
Pack like going on trip
Cloths, bedding, far Infared pad.
Requested sign in who and who they were there and what medicines you were giving them
All my supplements x plus his
Protein shakes and food for self.
Brought trilogy and humidifier and hospital supplied sterile or distilled water. (Otherwise boil water)
Surgery own settings
Doctor come talk to me brought it before.
Cough assist. 9/10 usually good respiratory person. Interested. Proactive.
Flush his feeding tube. I’m
Going to flush his feeding tube so he could flush in his supplements
Leap to be Fit. Some others can make do without pushing the envelope. Leap 2x per day
Training session- pulmonologist to do blood gas until
Mark was ideas.
Therapist came in at night. Wanted to know more.
Mark starting speaking on his own. Had infections. Peroxide burning. ER week in the hospital.
Comfortably main nurses their neighbor. Direct number. 7 minutes away
Kidney stone issues and sepsis. Constipaded wuth diarrhea. Ultrasound on kidneys. Backed up. 3 enemas to clear it out.
Fought infections 5-6 times in four months.
2 scoops a day. From something in sky uroLift. PA. Horrible.
Colloidal Silver: silver liquid and gel by Batures Sunshine
When to decide to go to the hospital.
Even O2 good.
Listen to body
Figure something out.
Didn’t go to ER
Fever, chills don’t want to do by self.
Change of trache. Learned how to do it daily
Michael’s once. Taught how to put next to hole until get trache. Under a minute. Mom, dad, daughters take turns to feel comfortable
Ton of experience
Check for Understanding and Completion of Step 46:
understand that myself or someone else needs to be in the hospital with my PALS as an advocate
understand that I am the only advocate my PALS has and I need to be a confident strong advocate since I almost always know what is best for my PALS, and know more about him/her, his/her condition and about ALS than the hospital staff.
understand that I my PALS has a right to use his own breathing machine, cough assist and feeding tube formula as long as I sign a waiver saying that I release liability
f I am not getting the response I need from the hospital or the hospital staff I have a right to request a patient advocate get involved. Other people I can speak to are the nursing supervisor or any doctor .
I understand I am a client of the hospital and myself and my CALS have a right to be treated respectfully on the same level as the hospital staff
I understand that the more polite, nice and respectful (but firm) I am to the hospital staff the more likely my PALS will be treated well.
In my “to go” bag is a statement written to show all staff before they treat my PALS to please say only positive statements to myself and my PALS because we plan to heal ALS.
have packed my “To Go” bag and am ready in case myself (PALS) or my PALS needs to be hospitalized.
am prepared with food, clothing, toiletries and supplements for myself and my PALS in case I need to stay in the hospital for the day.