After having the day off from doctor's appointments yesterday, today we dutifully trudged back to the medical complex to see an Occupational Therapist that is trained in the mysteries of lymphedema--the technical term for the swelling in Ernie's face and neck.
The secondary lymphedema that is plaguing him happens when the lymphatic system does not drain properly causing fluid build up. In this case, trauma from the tracheotomy combined with the existing fibrosis in Ernie's neck is the culprit.
It seems that identifying the problem is the easy part. There are no medical specialties in lymphedema. Sometimes (rarely it appears) a doctor with take a "clinical interest" in lymphedema but these doctors seem to be few and far between. So far, we have not been able to identify any locally.
This leaves most people in the hands (literally) of Occupational Therapists or Massage Therapists that have been trained in Complex Decongestive Therapy (CDT). CDT consists of three parts: manual drainage of the lymph nodes through massage, "pumping" and stretching exercises and compression.
We are signed up for 2 sessions a week with the OT. During this time, I will learn the massage techniques so that Ernie can get daily massages. In addition, Ernie will do the exercises at home every day. The compression garment will be added next week. In case you were wondering how we would fill our time between doctors visits.... Another skill added to the resume!
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