Team Baby Reid

My 14 month old nephew, Reid, was admitted into Egleston PICU on August 25th, 2016. What started off as pneumonia resulted in a very rare disease called Transverse Myelitis. For those of you who don't know, this particular illness is an inflammation of the spinal cord which affects motor / movement. It causes severe weakness or paralysis of the muscles, and causes severe pain. Recovery from Transverse Myelitis is variable depending on the individual and what the underlying cause is. The particular location of Transverse Myelitis on Reid caused paralysis from the neck down. It took a long series of testing to come to this diagnosis, including lab work and imaging tests. In order to perform some of the testing he had to be intubated and placed on a mechanical ventilator (breathing machine, on day 2) to keep his airway open. Due to his weakness, he continues to require a breathing machine to help breathe for him.

Once the team of doctors diagnosed Reid, the never ending treatments started. Reid received 7 rounds of “plasma exchange” therapy in order to rid his body of the antibodies that were harming him (basically, his own immune system was attacking his spine, so this treatment helps to stop that process). This was followed by blood transfusions to replace parts of his blood that he had lost during plasma exchange. He also received steroids as part of his treatment to help with the inflammation. He has had some reassuring moments and some very scary moments throughout this journey. Since his treatments, he has been able to regain some movement, but unfortunately he is not strong enough to breathe on his own without the help of a ventilator machine. After much discussion, it has been decided that next week Reid will have a tracheostomy performed in order to help maintain his airway and make the breathing machine easier for Reid.  He will also be fed through a tube that will be surgically placed in his abdomen to provide him nutrients.

Throughout baby Reid’s journey, his mom and dad (my brother), have been living in the hospital at his bedside day in and day out, watching the process unfold and not knowing what the next day will bring. Not only has this been incredibly emotionally trying, but as you can imagine, with a prolonged hospital stay in the intensive care unit, it will be financially challenging as well. Reid’s parents have remained strong and resilient through everything, and we want to do everything we can to support them through this unimaginable difficulty. We appreciate your support, and will strive to keep everyone updated as Reid’s care continues.