I (Kathy Jones, School Nurse) spent Christmas break at Austin’s bedside at the Memorial Hospital South Bend, IN.  Austin is progressing slowly. Doctor shared that it will take about a year to progress through  the traumatic brain injury (TBI). His diagnosis was diffuse axonal injury which involves the whole brain with loss of consciousness. He initially had emergency surgery for the blown diaphragm, and put all of  his vital organs back in place. H also had a chest tube insertion to “inflate” the lung as he sustained left sided rib fractures. After 2 & ½ weeks, another surgery was performed due to the shattered pelvis which was taken care of by a plate and 6 screws implanted for stability.  Austin’s left side of his body remains flaccid.  Austin goes in and out of a stupor.  He sleeps for 24 hrs and then he is responsive for 2 days, then the cycle repeats itself. He cannot speak clearly and has difficulty with tongue movement, thus the issue of nutritional intake.  He has had 2 swallow studies performed.  There was an insertion of a  Dobb Hoof “feeding” tube to give him the nutrients needed for healing.  He has lost 50% of his body mass and now has been recommended for a J-peg “feeding” tube insertion directly into the stomach. We are awaiting the surgeons call for when this will be performed. 

On the bright side, Austin may not be able to tell the year but he does know his parents!  Austin is using the oxygen via nasal cannula periodically and is able to keep his oxygen saturations up in the low 90’s.  All of his surgical sites are healing well too.  He had his first hallucination (brain trying to reconnect) yesterday…and it was about kitten’s climbing the wall. He kept on asking if they were real.  The doctors & NP’s shared that his recovery will take about a year. 

Kaitlin Millis is a 2015 Reed-Custer Graduate.  She was an honor student and played trumpet in the band.  Toward the end of 2016, Kaitlin suddenly became short of breath, making it difficult to walk to her car, or upstairs to her bedroom.  Sometimes she would lose consciousness and faint.  In October 2016, at the age of 19, she was diagnosed with idiopathic pulmonary arterial hypertension.  PH for short, is a rare disease which had no treatments until the 90’s.  There are many causes of PH, many which are autoimmune diseases. Kaitlin was tested and didn’t have any of them.  This disease causes the blood vessels in the lungs to narrow over time, making the heart work harder to get blood into the lungs, eventually causing heart failure.  The average life expectancy without a transplant is 7 years. 

Kaitlin was diagnosed with heart failure in December 2019, four years from her initial diagnosis.  Kaitlin has had to endure numerous invasive procedures, several hospitalizations (one even being over Christmas). She has been on dozens of medications. Specifically, one medication was administered via pump she carried in a Fannie Pack 24/7.  The cost of that alone was $20,000 a bottle (which only lasted a couple weeks).  Of course the medications came with terrible side effects, including migraines, gastrointestinal issues, and fatigue.  She has been on oxygen for the last year.