Hospital Preparation

47Step46HospitalsGrahic

47 Steps to Healing™

The information we share is for educational purposes and should not be treated as medical advice.

Emergency Information for ALS. Open or Print the following:

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.

Basic Principles:

  • 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
  • Try to go to the same hospital each time. The hospital staff then gets to know you and life will easier.

Items to have ready in your “To Go” bag

  • Print out the PDF’s in the section below to show hospital staff and ambulance team
  • Print 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)
  • Feeding tube formula
  • Syringe for bolus hydration and feeding.
  • Replacement feeding tube in case you need one in the hospital
  • Change of clothes for PALS and CALS
  • Water and non-perishable snacks for PALS and CALS
  • List of items to grab on the way out the door:
    • Primary and backup ventilation machines
    • Cough assist.
    • Perishable snacks for PALS and CALS
    • Vitamix so you can make food for feeding tube.
  • Blankets.
    • Often hospital rooms are cold and they do not have blankets.
    • Other times they have plenty of blankets.
    • You can leave them in the car until you find out. At least they are close by.
  • Eye masks for PALS and CALS.
    • Often the lights are on at night or get turned on throughout the night.
  • Phone and phone charger

If you go to the hospital

  • Try to go to the same hospital each time. The hospital staff then gets to know you and life will easier.
  • Do not be afraid to request the head nurse. If that is not successful request the patient advocate. Never wait.
  • The more confident and knowledgeable that you act, the more you will be respected. Be courteous but insistent and firm.
    • Example: “Oxygen is contraindicated for ALS. Please look it up and do not give oxygen. Feel feel free to call my pulmonologist.” Note: Oxygen is indicated in a very few circumstances. Make sure the hospital doctor speaks to your pulmonologist.
  • Stay at the hospital with your PALS or have another family member.
    • Many times they offer a cot or recliner so you can be there at night. Please request one from the pediatric unit.
    • Otherwise put two chairs together or rotate family members so you can get some sleep.
  • Print these out at the hospital if you forgot them. Usually the nursing staff will print this for you:

If you are on home ventilation and/or cough assist and going to the hospital.

  • Bring both primary and backup machines to the hospital
  • Usually they will allow you to keep using your home ventilator. The reasons for this are:
    • Your PALS is used to the settings on his or her own machine
    • Tell the hospital personnel that they need to stay on their own ventilator and you are happy to sign a waiver. If they persist, ask to speak to the head nurse and/or the patient advocate. Let them know they can contact your doctor if they have questions.
    • Why do you want to stay on your own ventilator?
      • Often even at the same settings, the hospital ventilator is not the same “feel” and may have be adjusted.
    • Why do they want you on the hospital ventilator?
      • They may not be familiar with your machine. However, you can request your RT (Respiratory Therapist) come to the hospital to show the hospital RT the settings).
    • Warning: Some CALS have had to rip off masks off their PALS at the hospital when the hospital insisted on using the hospital ventilator using the same settings. The hospital vent was too much pressure. This can cause damage. If you are forced to use a hospital ventilator, then make sure the settings are adjusted.
  • Usually the hospital personnel will allow you to use the cough assist.
    • Insist on riding with your PALS in the ambulance
      • Explain that your PALS cannot come off his or her ventilator and need to use it during transport
      • You may need to use the cough assist on the way to the hospital–explain this to them
      • If your PALS cannot speak, you need to be able to speak for your PALS.
      • Let them know “no oxygen”, that the ventilator uses room air.
      • Say “If he/she dies on the way to the hospital, for something I could have prevented if I were there, you will be responsible”

Listen to the Video Below for More Hospital Tips from those who know: Lisa, Joanne and Sarah

Though the amyotrophic lateral sclerosis ALS symptoms you face with your neurodegenerative condition may require you to go to the hospital, the above tips can help you continue your ALS treatment and maintain a healthy ALS life expectancy if hospitalized.

Click Here To View The Recording of Step 46 2023

Check for Understanding and Completion of Step 46:

I understand that myself or someone else needs to be in the hospital with my PALS as an advocate

I 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.

I 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

If 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.

If you have checked all boxes, Congratulations! You have completed Step 46.

References

The effect of hospitalization on patients’ emotional and psychological well-being among adult patients: An integrative review. Alzahrani N. Applied Nursing Research 2021; 61:151488. https://www.sciencedirect.com/science/article/abs/pii/S0897189721000951

Unmasking the hidden aftermath: post-intensive care unit sequelae, discharge preparedness, and long-term follow-up. Teixeira C and Rosa RG. Crit Care Sci. 2024 May 27;36:e20240265en. https://pmc.ncbi.nlm.nih.gov/articles/PMC11152445/

Death by Medicine. Null G, et.al. J.Orthomolecular Med.2005; 20(1):21-34. https://orthomolecular.org/library/jom/2005/pdf/2005-v20n01-p021.pdf

The Safety of Inpatient Health Care. Bates DW, et al. N Engl J Med 2023;388(2):142-153. https://www.nejm.org/doi/full/10.1056/NEJMsa2206117

Oxygen Use with ALS. Diane Huberty. https://www.alsfrombothsides.org/r-oxygen.html

Respiratory Failure in Amyotrophic Lateral Sclerosis. Niedermeyer S, et al. Recent Advances in Chest Medicine 2019; 155(2):401-408. https://journal.chestnet.org/article/S0012-3692(18)31054-7/abstract

Strategies to Prevent Healthcare-Associated Infections: A Narrative Overview. Haque M. Risk Manag Healthc Policy. 2020 Sep 28;13:1765–1780. https://pmc.ncbi.nlm.nih.gov/articles/PMC7532064/

The information we share is for educational purposes and should not be treated as medical advice.

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