My son’s struggles

My son Trevor was born 5 weeks premature in the spring of 1998. In addition to being born premature Trevor had jaundice and was born meconium in utero; meaning he had a bowel movement at or during delivery. From what I have read this occurs in post date deliveries or if the baby is in fetal stress during labor and delivery. After a week in NICU Trevor came home a healthy happy boy.
During his early years aside from having to have tubs put in his ears and an illness that included a touch and go ER, visit as well as a week in the hospital; Trevor progressed normally.
Somewhere along the line one foot seemed to become a little bigger than the other, not too noticeably; if you were to look you might notice a toe that is a bit longer than normal on his left foot. Then Trevor’s left thumb seemed to stop growing and we named it Mr Stubby, one hand looks characteristic of my hands with long thumb and the other looks like it came from my father-in-law Tom. Just the little idiosyncrasies that make Trevor a unique individual, much like the webbed toes that I have.
When Trevor was twelve he began to get migraine headaches that would last for months with no relief. He was also steadily growing and getting stronger. We already knew he had allergies to penicillin as well as seasonal allergies, but as he struggled with the migraines and we grappled with getting him treatment and relief we find out he had more medicine allergies. I have lost track of the number of ER visits he has had for anaphylactic reactions to pain medicines.
So it has been a long five years of different failed treatments with a few additional discoveries along the way; certain muscle groups that have not developed symmetrically which is very characteristic of Poland Syndrome, a birth defect that results in asymmetrical growth to include absence of some muscles on the effected side. Trevor has the symptoms of Postural tachycardia syndrome; as he moves from lying or sitting to standing his blood pressure and pulse rise drastically. Though the cardiologist he sees has not formally diagnosed Trevor, he did put Trevor on blood pressure medicine to regulate the change and it does seem to help. One doctor during a recent hospital stay mentioned Trevor may also have Fybromyalgia as indicated by pain at the trigger points on his neck and shoulders; we have not pursued that as we are already juggling pain management, cardiology, neurology, physical therapy, massage therapy, therapy to cope with pain and now acupuncture. Adding another specialist to the mix would not necessarily have any added benefit.
It was easy to explain how my daughter Courtney feels with her persistent flu like symptoms, but I want people to understand how Trevor feels everyday. You first must understand that he has not had a break from his migraine since February of 2014, his pain level has only fluctuated from bad to worse. I hope the following explanation will do justice to how he feels and can capture a bit of what he endures.
Based on many talks and observations of Trevor’s pain This is how I imagine it must feel and what it would take to replicate. You will need a few basic things; a good length of 2×4, a butane or propane torch, hammer and nails, the solution optometrists use to dilate pupils, 100 watt bright white bulb in a lamp, tape, an amp with a microphone and 2 speakers, and last but not least a slap file (wide flat piece of metal with teeth used to slap metal, worth looking up). The first thing would be to set the speakers up facing you at ear level, turn them way up and stick the microphone in front until you get awful feedback going; leave it in place and turn amp off. Tape eyelids open, add drops and place lamp facing directly at eyes; leaving it in place turn lamp off. Shave head, take slap file and beat scalp vigorously until tender to touch and entire head hurts, beat neck and shoulders with 2×4, Randomly throughout the course of 24 hours do the following to the scalp; apply torch, hammer and nails (not so hard to break anything) flip on amp for a few minutes, re-dilate eyes and flip on lamp for a few minutes, repeat slap file and 2×4 procedure frequently. Also randomly stand up and spin around rapidly until nauseated. The difference between his normal days and bad days would be how frequently you repeat the random processes.
Now this has become his new normal, a life filled with unending pain. Sometimes he goes days without sleep. He struggles lately to just keep going. I believe in him though, I see the strength he has within him and I know he can endure all things. He was home bound for almost a third of this past school year, before he became home bound he missed at least one day of school a week. Other than his english class, where he struggled to write through his pain, he passed all his classes and went to summer school for the english class and made a B. I couldn’t go to school everyday and make the grades he has made. I am really proud of him, of how he is learning to cope with his pain and succeeding in school despite the pain.