Breathe, breathe, breathe

Toddler with hemiplegia we see every year, making great progress thanks to his adoptive mom’s loving care

Dr Richard, always young at heart wearing a vest that was given to him by the man with schizophrenia. Richard had to complete the look with Ricky’s cowboy hat

Finishing the full newborn exam on the new baby with cleft lip/palate and trisomy 21

Dr Ricardo on the right, who is at the clinic year-round half days, thanks to our amazing benefactors. He will follow this little 5 day old as she gets her cleft lip and palate repaired

Our little dynamo who is blind instructing Thomas. Of course he is learning how to use the stethoscope because he wants to be a doctor when he grows up. He will probably be better with heart murmurs than me - when kids lose one sense often the other senses are more fully developed. He has excellent hearing!

Was a normal 16 year old until an autoimmune disease tried to steel her life 4 years ago. Thanks to benefactors we will finance her medications this year. They are making it possible for her to see us this year without being in her wheelchair!

Victoria and her 14 yr old son after the Mayan ceremony

My place of peace this trip. Breathe, breathe, breathe

Breathe, breathe, breathe.  I don’t even really know where to start in processing this year’s work in Guatemala.  Usually during the week I will have one or two patient encounters that bubbles to the top and I have an overwhelming need to write about them.  That is so helpful for me as a way to process the experience.  This year, however, there are just countless encounters.  Every year there are many moments of feeling such an intense presence of the divine when we are there, but this trip I just cannot pick one to land on to write about and process.  So, I am going to write out a little one-liner about many things.  First up is our continuity patients.  These are patients we have come to know over the years. They come each year to have an annual visit with us.  Needless to say these relationships are deeply powerful to all of us.  We care so much for these beautiful people and really just want to give them a little hand along their way.  If we can ease their burden just a little, it eases ours.

Continuity patients

• 20 year old with dermatomyositis probably induced by COVID in January 2020, who we are able, through lots of caring donors, to supply her autoimmune medicine for the next year (these cost her several thousand dollars annually in Guatemala) - without them she is confined to a wheelchair

• Dynamo almost 7 year old with visual impairment that captures everyone's hearts now for the last 3 trips.  I have immense respect for his phenomenal mother. He had to have a tooth extracted this year by Dr Christian our dentist.  During his fear and panic over the prospect of having the tooth pulled he shouted that he was going to “destroy Christian!” but his mom sent a very sweet voice recording of him forgiving Christian the next day.  The little boy has worked hard the last year to learn some English to great us with when we come to Guatemala..  The voice recording is : GOOD MORNING CHRISTIAN THANK YOU por sacarme los dientes - half English and half Spanish.  Listening to the voice recording  over and over again has sustained me through hard things already!

• Family with 2 young children with skeletal dysplasia that Deb has been able to prevent joint contractures from worsening; their third baby had her second physical this trip - no skeletal dysplasia for her except her sternum, so I am hopeful she will grow up without such mobility challenges

• Elderly gentleman who has schizophrenia and sees Dr Richard yearly.  We are now able to pay for his medication refills. He credits Richard for saving his life on the first visit even though we had no meds to offer him, but Richard listened to him share his story.  That was enough to sustain him for a full year until the next trip.

• Last October a sweet child lost her battle with aplastic anemia and I was able to see her mom and share a hug and tears remembering how wonderful her daughter was.  We tried unsuccessfully to get her enrolled in a research trial at St Jude’s for several years.  She needed a bone marrow transplant to survive.

• 3 year old with hemiplegic cerebral palsy from a failed abortion attempt by his biological mom, doing great with the loving care of his adoptive mom, Daisy.

• Older gentleman with rheumatoid arthritis who couldn’t lift his arms above his head when we met him 3 years ago, we bring his medication.  He travels 5 hours one way to clinic and now shows off his much improved mobility

• Several adult patients with hypertension and diabetes that join us annually

Really just seeing any one of those patients in a week would be enough teaching opportunities for the Regis students and would make us as providers work hard to help address their problems in whatever way we could.  But in addition to all of those, we met several new, equally complex patients this trip.

New patients with significant medical problems

• 8 yr old twins with severe cerebral palsy, who lost their dad 15 days prior, so widowed mother is left to take care of 7 children, two of whom are completely immobile and in diapers,  They also have ambiguous genitalia, so remarkable learning case for the students - and me

• 13 year old with untreated congenital hypothyroidism leading to severe brain damage.  Family traveled 5 hours one way to clinic.  We were able to get her thyroid labs done for her and refill her thyroid medication - based on her current dose she needed 274 pills for a 1 year supply, we had 273 for her.  I have never seen a patient with untreated congenital hypothyroidism since it is screened for at birth in the US and immediately treated to spare the immense brain damage. What made us have the exact right number of pills to give her this year? It is that whole providence whispering thing and us answering the call.  I truly am amazed how every year some miracle happens like this.  She also had a tumor resected from her left eye 3 years ago, she was scheduled with me as a post-op appointment for that problem - that is the least of her concerns, really.

• 5 day old with cleft lip and palate and trisomy 21 - she got started on a program the TESS foundation does thru the clinic where she will get the specialized bottle nipples cleft kids need since they cannot form an adequate suck from a human breast.  She will get weighed monthly at the clinic and get 8 cans of formula each month to ensure she grows well enough so she can start getting surgical repair after 6 months of age.  TESS foundation identified our clinic as a hub clinic for the whole area since we are able to support Dr RIcardo’s stipend to be there year-round and provide pharmaceutical help.

• Young toddler with syndactyly - fused fingers - and tight achilles tendon who got started in PT, both Dr Deb and I stressing to the parents to not treat her as if she is dis-abled but just differently-abled.  They have been reluctant to let her try to use her hand and legs because she is different.  She is already figuring out how to use them despite their reluctance. 

Even though this seems like a long list, I am 100% sure I am missing many more.  I came home coughing on the plane back to Denver and a few hours later I tested positive for COVID.  And the brain fog is real.  So for now this is the best I can do for this list.  But look at the remarkable list of people we have had the honor to meet this week and try to accompany them on their journey.  It is hard to walk it alone, especially when resources are so scarce.  Each one of them will motivate us to work harder this next year and raise more funds to continue this project.   

Our week ended with our visit with Victoria, the Mayan priestess who does a ceremony with us each year.  This year we had the ceremony in a peaceful private home that is built into the hillside overlooking Antigua.  For me it was an hour of letting go of anxiety and just being in the present moment.  It was a chance to breathe, breathe, breathe.  And for every second of it I am grateful.

Dr Lauri