Family Care Compass

Family Care Compass 🧭

Easy Navigation for Your Care Email

📧 Email Made Simple 🏥 Hospital Resources ❤️ Family Support

Just for You, Mom 💝

The Bottom Line

  • 🛡️ You're safe with good doctors and nurses
  • 💪 Your body is working hard to heal
  • 👨‍👩‍👧 We're all here with you
  • 🌈 You're going to get through this

Your Simple To-Do List

1

Just Breathe

Notice your breath - in... out...

2

Rest When Tired

Sleep is medicine

3

Let Us Help

Just be - we're here

4

Notice One Good Thing

A comfortable pillow, a kind nurse

You're Loved

You're Strong

You're Not Alone

Your Assignment Right Now

Take three slow breaths

🌬️ In... Out... 🌬️

That's it. That's all I'm asking.

For Dad - The Full Picture 📋

Quick Summary (Read This First)

Mom's Current Status

🏥 Critical but stable in ICU

💨 Severe respiratory distress

🩺 Post-intervention autoimmune response

Primary Challenge

Oxygen saturation ~75% on high-flow oxygen

🚨

Emergency Contacts

📞

ICU Nurse's Station

[PHONE NUMBER]

👥

Social Work

[PHONE NUMBER]

🛡️

Patient Advocate

[PHONE NUMBER]

Part 1: Current Situation

The Three Interconnected Problems

Immune System Dysregulation

Autoimmune-type response where immune system is confused

Respiratory-Digestive Coordination

Coughing/shortness of breath after eating

Post-Intervention Inflammation

Severe inflammatory response triggered by treatment

Mom's Current Medical Status

📊 Critical but stable in ICU

💨 Oxygen saturation: ~75% on high-flow oxygen

🩺 High-flow nasal cannula support

Part 2: Treatment & Support

Integrated Healing Approach

Evidence-Based Mind-Body Support

  • 🌬️ Guided Breath Awareness
  • 🎵 Therapeutic Sounds (40Hz & 90Hz)
  • 👨‍👩‍👧 Family Presence as Therapy

Nutritional Support

Safe Resources Available

🥗 Anti-inflammatory principles

🏃 Small, frequent meals

Part 3: Finding Help & Information

Local Specialist Research

Verified directories and trusted sources for finding specialists in complex autoimmune and respiratory cases.

Safe Research Practices

  • 🏥 Mass General Brigham
  • 🎯 How to navigate medical information safely

Key Doctors & Centers

New England Specialists

Mass General Hospital

Dr. Zachary J. Wallace - Rheumatology/Immunology

Brigham and Women's Hospital

Dr. David M. Systrom - Pulmonary/Critical Care

Safe Research Guide

When looking for more information, it's vital to use reliable sources. The documents recommend this hierarchy:

  • Top Tier (Most Reliable): Government and research portals (.gov, .edu)
    • National Institutes of Health (NIH)
    • PubMed (NIH database)
    • Harvard Health Publishing
    • Mayo Clinic
  • Trusted Organizations (.org):
    • American Thoracic Society
    • American Lung Association
    • Society of Critical Care Medicine
  • Search Tool: ClinicalTrials.gov - To search for ongoing clinical studies
Red Flags to Avoid: Websites selling "miracle cures," personal blogs, claims of "secret" information, sources that discourage consulting medical professionals.

Complete Documents (PDFs)

These are the complete research documents. Click to open them (will work if this page is in the same folder as the PDFs).

📄 Appendix B - External Resources & Doctors in MA.pdf 📄 Leading New England Physicians for Post-COVID and Related Syndromes.pdf 📄 Researching Threshold Practices for Critical Care.pdf

We're in this together. One step at a time.