Bout #1 - Spring 2008

Bout #1 - Spring 2008 in Round Rock, TX

During a visit from my parents in the Spring of 2008 we noticed that our 7 year old son, Ben was limping around the house.  We initially thought it was a sprained ankle...then Ben started crawling around the house (particularly up the steps) on his knees "because his ankle hurt when he walked on his feet."

We made an appointment with a local orthopedic doctor immediately after seeing the crawling behavior.  The doctor asked us if Ben had any kind of injury from sports, etc. that brought this on.  There was nothing like that...though coming down the steps the day prior Ben did say he "heard something snap" and then the pain increased. 

Xray's confirmed a broken ankle and some infection around the bone.  Ben was put in a cast for 6 weeks.  At the end of 6 weeks the cast came off to reveal the area was still swollen and yellow.  We were immediately referred to Dell Children's Hospital in Austin, TX (about 20 miles south of our house).

We checked in that afternoon and Ben was immediately run through a series of tests including x-rays, bloodwork, an MRI, etc.  After all these, we met Dr. Prince (Pediatric Osteosurgeon) and were informed that they thought Ben had “osteomyelitis” – a rare kind of bone infection in his leg.  Dr. Prince suggested surgery to look at the bone, clean out the area and take a biopsy of it so they could test it to try and find the kind of bacteria present.  Knowing the type of bacteria would help them prescribe the needed antibiotics to fight it.

We accepted this course of action as we had never heard of this before and the doctors seemed confident in their diagnosis and Ben’s positive recovery if we treated it as they prescribed. 

During this entire period Ben’s pain was gradually increasing.  He was taking mostly over the counter pain medicine up until his hospital stay. 

My most distinct memory from this period is that, when Ben came back from the bone biopsy surgery, he was in tremendous pain.  He was on a morphine drip but about every 3 hours he would have what the hospital staff called “breakthrough pain” where even the morphine did not help and he would start screaming at the top of his lungs.  It took about 2 days for that level of pain to subside and, as a father staying with him in the hospital, this was one of the most difficult experiences of my life.  There was nothing I could do but try to calm him and make extremely direct, and occasionally inappropriate, demands of the hospital staff for more pain medicine.  Most of my requests were ignored or explained away.  I think I was within 5 minutes of deciding to go to the liquor store and treat Ben myself with some Jack Daniels when it seemed as if his pain began to diminish.  [If your child has to go through this surgery be sure to request a “pain block” above the affected area - we later learned about this option during bout #2 - see later in this history for those details]

I hope I never have to repeat that experience (and I’m sure Ben doesn’t either)  - but I know there are parents who have been through far worse.  My heart goes out to all of them.

We later learned that the bone biopsy cultures had failed to grow any bacteria giving the doctor’s no choice but to treat Ben with a number of “broad spectrum” antibiotics. 

A separate surgery was scheduled so they could insert a broviac tube in Ben’s chest that would be used to administer IV antibiotics at home over a 8 week period.  We came to learn that antibiotics taken orally are only so strong.  Antibiotics dumped directly into the bloodstream are far more powerful than those that have to go through the digestive system.   

Dr. Fernandez (Pediatric Infectious Disease) became Ben’s doctor and prescribed the IV antibiotic regimine (Clindamycin and a few others I can't remember the names for).  My wife and I were trained in the hospital on how to administer these medicines through Ben's broviac and we were sent home to continue.  Antibioitics were given every few hours around the clock.  The first dose was at 6:00am with the last dose going in around midnight while Ben was sleeping.  My wife and I were exhausted after the first two weeks but we kept it up and it appeared to work.  Ben's skin color during this time went from his natural color to a very pale white...and we were told to try to keep him out of the sun as much as possible.  We also gave him lots of yogurt, etc. to offset the damage done to his digestive system.

At the end of 8 weeks, the broviac tube came out and Ben was fine.  He could walk without pain but remaining scar tissue made his ankle look a little swollen.  That never went away but we were fine and Ben seemed to be as mobile as he was before all this happened.

About two years pass….