“Brennan, why didn’t you tell me you had to go poopie!?”
Moments like these, some that can appear to be a major inconvenience at the time, actually provide context as to how far we have come, causing a smile to spread over my face and a realization that we are moving forward and making progress. This is life with a God given miracle!
To say, that one year after transplant, Brennan has undergone a miraculous transformation only tells a small part of his fantastic story. The nearly 7 inch scar down the middle of his abdomen down to his groin has diminished markedly; a veritable work of superior surgery from the talented hands of Dr. Ciancio and his team. Whereas most children his age grow 3-4 inches in one year, B now stands nearly 4.8 inches taller and nearly 6.5 pounds heavier than prior to transplant- he is catching up with “Brenny’s kidney”, yet another small miracle considering he is not on any steroids.
Also having improved markedly are his speech and cognitive skills. At 4 years old now, he can count to 20 in English and 10 in Spanish and knows his ABC’s, colors and shapes. In between spoonfuls of yogurt and sips of juice he loves to play with his iPad, an excellent teacher and a gracious gift from his great uncle and aunt and wrestle his big brother. The gagging reflex that prevented us from feeding him anything when we arrived home post-transplant has now subsided but is still present when he tries to eat solid food. More recently he has started to allow us to put puffs in his mouth. The task now is to teach him to bite down and crunch the tiny morsels. We are having small successes with this practice. When he eats his first McDonald’s fry, expect an immediate blog post! Hopefully, it won’t be long now.
Potty training is complete and sometimes I wonder if we are running a mini-nudist camp. He cats around the house with a t-shirt while going commando (bottomless) on a typical day. He has to pee at least once per hour as we shoot for 1.8 Liters of fluid per day to sustain his "adult" kidney (almost 0.5 gallon of which most is his formula, kind of like Ensure) through his g-tube and whatever he drinks. His medications have been an exploratory endeavor, but we have him dialed in now and relatively speaking, he is on very low doses of immunosuppresants, perhaps due to our compability.
Doctor visits are now few and far between. We now only go see Dr. P. once every 2 months. We have only had 2 overnight hospital stay this past year and his labs, which were done twice daily immediately after transplant, then three times per week after coming home, then progressively scaled back to once every week, once every two weeks, once every three weeks are now once per month as this year has ripped by right before our eyes.
No longer does he throw a hollering fight at the prospect of blood, instead he focuses on collecting the empty color test tubes from his gentle phlebotomist who gets it right every time. The daily battle, screaming matches and wrestling to brush his teeth one year ago has now turned into another every day commonplace activity. Once we arrived home, where he once used to wake up at night clearly agitated sleeping next to our bed has now turned into him and Kyle sharing a room and slumbering peacefully.
The daily injections of growth hormone that once helped him to overcome his overburdened and diseased birth kidneys to help him grow are no longer needed (nor are they advised as they may lead to potential rejection). Yet, he insisted on going to the refrigerator where the shot was kept and imploring us to give him a shot a few weeks after arriving home post-transplant. We feigned the act of giving him an injection for another week or so and we soon passed this stage as well. The bow-legs, reminiscent of children with kidney problems and calcium imbalance have nearly straightened out and his stroke imposed favoring of his left side and resultant weak right side are growing stronger every day. His running has also improved as he works to strengthen his right side. It is, as if, his own sick kidney was preventing him from recovering from the stroke and hindering his normal development. Kyle is happier and more relieved now too, getting bigger and is absolutely the best big brother I have ever seen. I don’t feel any different, although I do take greater care to monitor my fluid intake and my scar has now nearly faded. Mom is busy as ever, always concerned and always watching out for her boys. We are acutely aware and very thankful to all of the nurses, administrative staff, doctors, friends and family members who made this miracle possible-Thank you!
Note: Last photo courtesy of Simon Hare Photography.
