Actual Update – September 15th

September 15^th – I saw both my infectious disease specialist and my orthopedic surgeon:

Infectious disease: 
 

● None of the samples taken during the previous surgery grew anything, even the special ones my infectious disease specialist had done. This is good news – it means there was nothing really funky going on in my leg and whatever was going on (probably Staph. Aureus as expected) is gone.
 

● The words we (mum and I) have been anxiously waiting for: “The bone infection is theoretically gone”. My ID specialist explained that there is no reason to believe any infection is left since so much bone was taken out. The IV vancomycin and oral Spetra should have taken care of any infection left in the soft tissue.
 

● ID specialist tells me to finish the course of Septra I was prescribed on Sept. 3^rd and then to stop all antibiotics. This will bring us to October 3^rd, when the great wait to see what happens (or not) in my leg begins.
 

● Bearing no signs of infection, I am cleared for surgery number five.
 

My ID specialist was surprised that I didn’t have an external fixator already and that I was permitted to put weight on my leg (thank you very much walking cast).

We scheduled my next appointment with her for November 17^th .
 

Orthopedic Surgeon:
 

● Surgeon comments on how swollen my leg is. Says the swelling will take a long time to go away but will eventually disappear.

● X rays from surgery are reviewed. Surgeon is happy with how much bone was taken out.

● I was given more information on the next phase of this ridiculously long ordeal. Surgery number five will be in mid-November, a bit sooner than expected. I will get a monolateral external fixator for “lengthening over nail/distraction osteogenesis”. We will grow 1 mm of bone a day so I will have the fixator closer to three months than the two I was originally told. I will be on antibiotics the entire time given my history of infection. I will have a sixth surgery, probably in February 2016, to remove the fixator and place a plate and screws in my leg. The internal rod of the fixator will stay in (hopefully forever if there are no complications). Then the holes left in the bone and skin from the fixator fill in, the new bone consolidates, and we start waiting to see if the infection ever returns. At this time, we hope the entire recovery process should only take 5-6 more months.

 

● Surgeon agrees that the bone infection is “theoretically cured” but stresses that we thought this before in 2012, and look where we ended up anyways. I think he is more cautious than infectious disease.
 

● Surgeon agrees with ID specialist that I should continue with the oral Septra until Oct. 3^rd, and to make an appointment with him for a week after that. If there are no signs of infection, we will schedule surgery number five.

● I got a new cast - a patella tendon bearing cast that I can walk on if I use crutches.
 

I scheduled my next appointment with my orthopedic surgeon for Oct. 9^th.
 

This appointment was really important for one reason that I think is pretty obvious. It is also the reason I have, in part, fallen behind in blogging (other than hiding from everything going on). Both my ID specialist and OS said those magical words “the bone infection is gone”. Of course, they both framed that sentence with the word theoretically, but it is the first time I have heard that phrase since the relapse. Given my history, I have been hesitant to share this news. I am weary to believe what my doctors say. It took me a really long time to convince myself that I was indeed healthy once more in early 2013 when I had been given the final all clear. I remember sitting in my ID specialist’s office asking “what are the chances that the infection will ever come back?” My doctor responded “The chance is there, but I don’t think that will happen to you.” I remember those worse so clearly. They have echoed in my head over the last year as I have dealt with the reality of the relapse, and it scares me to know that I might seem ok now but that the infection could come back in the future. It could be 6 months, 3 years, 28 years. Or it could be never. It could really be gone. We will never know for sure. There is no cure in the land of chronic osteomyelitis, only relapse and remission. So once more we are cautiously optimistic, and we will proceed as if the infection is gone. If it ever comes back, we will deal with it then. It is a bridge we may never have to cross. 
 

I should be happy with this news, thrilled, ecstatic. Truth be told, I am scared. I have been through some horrible stuff in my life, but this is the thing I fear the most. I pray to whatever god(s) there are that those little nasty cells that have caused so much damage are all gone. If I am healthy and if I can walk, then I will be happy in life.