Mycobacterium return

In early January, the dermoid cyst located just under Brennan’s left eyebrow, was successfully removed as previously described in our last blog. Everything went well and it was but a short stay at the hospital. A short week later, a nasty stomach virus, probably contracted at the hospital, made its rounds through the family, necessitating another hospital stay only lasting a few days in late January.

Finally, dermoid cyst and virus free the family embarked on weekend trip to visit Nana in Central Florida along with a fantastic day at Sea World. During our stay, we noticed a red mass located where his peritoneal catheter was located before being removed due to peritonitis (December 2010). After emailing pictures and making phone calls with doctors and nurses over the weekend and a follow up visit to Dr. P. in Miami the next Monday, a course of antibiotics was decided the best course of treatment for the next 30 days with the possibility of excision or removal should the mass persist. Within 24 hours the redness was gone but the mass still remained.

Of course, our worst fear was that the mass was the result of the slow growing bacterium from the tuberculosis family of acid-fast bacteria which require little or no oxygen to grow and can often linger for extended periods of time. The nasty bacterium, that nearly cost Brennan his life more than a year ago might have returned after nearly 14 months of being dormant. Beyond this, if such an infection was present, it could affect his candidacy for transplant since the transplant surgeons prefer not to place a healthy kidney into someone with a mycobacterium infection, should a viable cadaveric donor become available at this time. Because the mass, or in this case, his scar tissue (termed a granuloma) was not in the peritoneal cavity there was less cause for immediate worry concerning the potential for septic shock and we had the luxury of treating with antibiotics as a first course of action.

While the redness quickly abated, and he never had a fever or was in discomfort, the tiny mass remained after 30 days and so, in late February we decided to have it surgically removed by his excellent and now personal plastic surgeon Dr. A., who previously removed the dermoid cyst. Turns out, the mass was only superficial to the muscle and just below the skin allowing for easy removal, quick recovery and belief that the infection was likely a localized condition. Tests of the excised scar tissue did not reveal the dreaded mycobacterium in a culture test, although the dose of antibiotics may have cured it prior to removal of the mass.

The lingering mycobacterium may have clung to the material used to originally anchor the peritoneal catheter in place; a kind of sponge, which the body naturally attaches to prevent pull out of the catheter.  When the catheter was removed, microscopic remnants of the sponge that were attached to the body may have remained along with the mycobacterium.

In late March, an inability to hold down anything with pronounced bouts of vomiting, again led us to our vacation retreat at the hospital. Through the two day stay, we were able to acquire a “tune-up” since the IV fluids act as a flush for B’s system. This “bug” or whatever caused him to not keep anything down illustrates the importance of fluid balance since we are on, what we have termed, the poor man’s dialysis.

While the quantity of fluids is important for his blood chemistry, so too, is the quality. For example, if the body does not receive adequate protein it begins to strip that protein away from tissues, often muscle, thus increasing the level of Nitrogen in the bloodstream. Not a problem for the normal individual, but for someone who cannot filter the Nitrogen, this causes a rise in the Blood Urea Nitrogen (BUN). To ensure this does not happen to B, we carefully monitor the quantity of fluid and his caloric intake. The calories are also important! Without the sufficient calories the situation just described can occur. Recently, we have dialed in his calories and fluid intake now at 1.6 L of formula per day. His formula contains low Phosphorus levels, to help maintain his BUN in the mid 60s (normal people have values around 7-20 mg).

 As we wait for transplant, things are stable for B. Since, barring a miracle, he will likely require multiple transplants in his life, if we can continue on the current course of “solution through dilution-poor man’s dialysis” it will ultimately translate into less time on immunosuppresants and other assorted transplant associated medications and improve his chances of transplant success since he will be bigger at transplant.

For the last 17 months we have been on the transplant list and Dad is a viable option should the need arise. At this point, we have been on the list so long and we want him to be bigger that it makes sense to wait. We are acutely aware there are others very deserving of surgery. In fact, we are really quite lucky when you consider that: 1. we have not been on dialysis for over one year; 2. B’s problem lies in the fact that his kidneys just didn’t grow properly and is not a chronic deteriorating one in which there is fear of a disease chewing up an organ once transplanted; 3. we have good health insurance! A new kidney(s) plumbed in will solve that problem and if taken care of properly will last a long time.

 A few rooms down from us in our last hospital stay, lay a boy with Lupus in dire need of a kidney. In the short term, a new kidney will help him, but this disease can grind up a healthy organ in a number of years.

All the while, our lives go on just like anyone’s. Big brother Kyle is proud of his straight-A report card and his two front teeth missing smile! His favorite dinner time conversation topics consists of constant quizzes regarding the number of moons orbiting Jupiter, what time Saturn rises in the east and geographic designations of each room in the house. In case you are wondering, the kitchen is the North room.

Mom and Dad are working hard and actually finding some abbreviated time for date nights! Brennan reminds us to not take things so seriously with his common refrain, “Don’t worry Dih-duh (or Momma).”

Thanks again for everyone’s prayers, support and well wishes!