A new chapter in this unbelievable journey!

In late August, on what was a muggy Miami summer evening outside, among a whirl of activity, machine beeps and concerned faces, Dr. Ciancio calmly led an entourage of his fellow surgeons still clad in surgery scrubs following nearly 12 hours of surgery onto the 5^th floor Pediatric Intensive Care Unit; kindly introduced himself to his patient’s new nurse and gave specific instructions for his care. His patient was Brennan. Hours earlier, a living donor kidney was nestled in a stainless steel container and carried from an immediately adjacent operating room and implanted by the highly capable and talented hands of Dr. Ciancio into Brennan. That living donor was me, his father.

There have been so many miracles along the way and this was a glorious culmination of so many people’s efforts and answered prayers. Medicine, we have learned, is a science and art at the same time sprinkled with educated guesses, calculated risks and cost/benefit ratios.

 

As a record breaking heat wave engulfed much of the country this summer, we reached a critical crossroads in the care of our son. His creatinine and blood urea nitrogen (BUN) had attained levels approaching the need for dialysis and at this point the specter of hemodialysis was lurking prominently in the background if a donor kidney was not located in the very near future. All along, we intended for my kidney to be Plan B, but after nearly 2 years on the transplant list with no calls for a suitable cadaveric donor, we decided after consulting with Dr. P. to initiate the process of giving him my kidney.

 

For the first three years of Brennan's life leading up to this point, it felt like the beginning of a roller coaster ride while seated in the front car, accentuated by a slow mechanical climb to a steep precipice with us riding in the front car. When we made the decision that the time is NOW for transplant, it was as if the first car of that roller coaster reached the pinnacle of the track and it slowly creeped over the summit dangling there for a brief moment to be followed by a sudden gravity wrenching descent with a series of twists, turns and loops.

In that brief, lucid moment awaiting the rest of the cars to clear the summit, we had a brief moment of a perfectly tranquil view of all of the preparations we were going to make laid out below us, yet we were so high the features below were not yet clearly defined. It was a moment of unbelievable anticipation and hope. We had to make preparations medically by making sure all x-rays, ultrasounds, blood work was current for both of us, doctor approvals, family preparations during and after the surgery such as who will help take care of who, how much school will Kyle miss, making sure our employers support us... It was a long list of things to do and before we could take another breath our brief moment of clarity was gone in a blinding rush and things started happening alarmingly fast as the weight of the cars behind had reached the point of no return as they cleared the top.

Nearly one year ago I had been approved as a donor for Brennan but Dr. Ciancio wanted Brennan to be bigger for my kidney and now there were some tests that required repeating and subsequent numerous visits to the hospital for both of us to confirm our status as being compatible. Four days before surgery, I met with my surgeon, Dr. Chen and was impressed at her knowledge and understanding of our situation. She explained the procedure and how they were going to give Brennan my right kidney necessitating an “open nephrectomy” translating into a larger incision, more recovery time and the removal of part of my lowest rib. This rib does not connect to the sternum; instead it juts out as a potential impediment to safely removing the kidney and could tear the organ during removal. In the 60’s the removal of this rib served to enhance Hollywood starlets’ hour glass figures. The glue and internal sutures that would seal my incision were designed to leave a minimal scar and can only withstand 10 lbs. per square inch meaning I could not lift more than 10 lbs. for 8 weeks following surgery. She told me I would be in a lot of pain; actually she told me I would be in a hell of a lot of pain. Of course, my first thought was how much pain Brennan will feel after surgery.

Her response hit me hard. She stated that he is sick. He has been sick since he was born and he will begin to feel better immediately after transplant. That simple statement, “he is sick”, weighed heavy on me and made my eyes water. I was never in denial of his condition, but the possibility that he will begin to feel better was the hope we have been clinging to these 3 years and it evoked my tearful response.

In the days leading up to the surgery, family began to arrive to help as we made our final preparations. Going into this, I knew we could not do this alone and that we were going to rely on our family and prayers. I just never expected we would lean so heavily on them and just how eager they were to help and how very capable they were of helping us pull through.

One day prior to surgery, Brennan was admitted for IV fluids to make sure he was sufficiently hydrated before surgery which was scheduled at 6 am the following morning. About 5:30 that morning the nurse entered our room and informed us that the blood sample collected the evening before revealed his platelet count is low-30! It should be a minimum 100 for surgery and this could potentially delay surgery. A frenetic rush ensued to collect blood and analyze the sample to determine if this was real or a lab error. After Brennan put up his usual fight to resist the taking of the blood sample, the order “stat” was placed on the vial and we waited. Soon, a young man still sleepy eyed, appeared to transport Brennan to pre-op as the minutes passed we waited for the lab to analyze this crucial sample. The nurse emerged and gave us the good news- platelet count was over 200, the first sample must have been a lab error. The nurse handed the transport guy his file and helped situate Brennan on the bed, Johely lay with him and we were then hurried to the pre-op area.

In the pre-op area, a large room where the only privacy available came in the form of retractable curtains hung from the ceiling, I was peppered with numerous medical questions by a friendly nurse, an IV was started and told to change into a clean, standard issue blue hospital gown and hair net. When all standard preparatory procedures were finalized Brennan’s gurney was place next to mine, we tried to keep him occupied and our families were allowed in for pictures and prayers.  

Next, a young surgeon emerged with a permanent blue marker in hand to confirm the removal of my right kidney. He wrote “open” with his initials on my right side, indicating the removal of my right kidney via the open nephrectomy procedure. The surgical plan was to take Brennan first with a staggered approach so that his kidneys could be removed and later sync with the removal of mine. About 830 am he was taken into surgery. However, the actual surgery does not begin immediately since there is still substantial preparatory work to be completed while unconscious. A central IV line would be placed in his neck for access purposes for fluids and blood samples; a breathing tube place in his throat and a foley inserted to monitor urine production.

The removal of Brennan’s kidneys was necessary due to the chance of infection from his urethral reflux. Removal means an extended operation and recovery time. Typically, the ureter leads from the kidney and into the bladder in a straight line. In Brennan, his looked like a spaghetti highway acting as a potential harbinger for infection. Any possibility of infection (or sickness) is not an ideal situation for transplant recipients due to the immunosuppresants. Once ill, the patient usually goes to the hospital and an intricate dance ensues balancing the reduction of immunosuppresants so the body can fight the infection and not permitting the rejection of the transplanted organ.

While Brennan was undergoing final preparations for surgery, Dr. Ciancio emerged and informed us that his surgery would soon start and that he was going to review my CT scan of my kidney again and that there was a possibility they would take my left kidney instead.  He explained my right kidney had 3 arterial branches and if one of those clotted or became dehydrated in Brennan he could potentially lose renal function in a part of the kidney, not to be reclaimed.  Whereas, my left kidney had one arterial branch. He said he wanted this to be a 20 year kidney. With adult kidneys transplanted into pediatric patients, proper hydration is essential and something we will diligently monitor.

    
Minutes later, Dr. Chen, appeared with a blue permanent marker in her hand. The decision to opt for my left kidney had been made, meaning a less painful and invasive laproscopic procedure. Unfortunately, my first foray into the realm of plastic surgery via the removal of my spare rib was not meant to be; no hour glass figure for me. I must admit having both sides of my abdomen marked in surgical permanent blue ink with no way to erase the instruction to remove my right and left kidney made me a wee bit nervous. I was assured by the attending, Dr. Chen that this would not be a problem since she was going to be doing the surgery. A futile attempt was made by a well-intentioned nurse to remove the marker but she only managed to smear it and she resorted to taping a piece of paper towel with the words “no” written on it.

After nearly four hours of Brennan in surgery and waiting with my family in pre-op area my dance card was called at approximately 1230 pm. As I was being wheeled to the OR and laying on the gurney watching the unremarkable hospital ceiling tiles pass by, the anesthesiologist must have administered the sedative they promised and a nondescript friendly voice informed me Brennan was in the adjoining OR. I said a quick prayer, to let him know that I love him and was so proud of him and that I would see him soon. Nothing in the OR was distinct at this point, just that someone was obviously moving my gurney into prime cutting position, as far as I could tell, since I came in head first and now my head was near the door.  The ceiling rotated and substantial surgical lights not yet turned on were poised in anticipation….

“Scott, wake up. You are out of surgery”, bellowed a demanding male voice in an attempt to wake me as I was being pushed down the corridor into post-surgical recovery. It was 6 pm. “Okay”, I groaned, with a shot of pain crawling up my abdomen. Apparently, and no one informed me of this, once out of surgery, you are woken up without pain medicine. Thus, the actual pain from the surgery helps to wake the patient. Ouch.

In post-OR recovery, it was my not-so-good fortune to have been assigned the world’s slowest pain medication nurse. As I writhed and waited in pain from post-anesthesia side effect abdominal spasms (right where it hurts!) and waited for this nurse to begin my morphine drip, the very capable anesthesiologist came in to inform me that my kidney was successfully placed in Brennan and producing urine!   

Surgery for Brennan lasted another hour as his 6 inch scar beginning below his sternum and extending just below his waist line was glued and sutured internally. He was immediately admitted into the PICU while I was relegated to the adult 6^th floor post- surgery recovery.

 

The following day, partly due to some of the medications Brennan was administered, he began to accumulate fluid in his lungs. Attempts to dry out his lungs by placing an oxygen breathing tube under his nostrils did not work because he was breathing with his mouth open. Further measures, such as a fireman style oxygen mask were not successful from his open reluctance to wearing such a mask. At this point, my Uncle Bill wheeled me over to see him and Brennan looked good but not himself. His incision was larger than mine and I ventured to guess he was in pain too. There was a total of eight IV machines hooked to him forming a Christmas tree of blinking lights and numerous tubes and lines in him. Looking at him for the first time post-transplant left me speechless realizing that my kidney, a vital organ from me, was for him, a remedy to finally feeling better. I think, in this brief moment, I understood how a new mother must feel upon gazing at her newborn for the first time.

 

Assisting my uncle in wheeling me to the PICU was my brother-in-law Bob. I marveled at how, in the span of few short minutes he went from helping position my wheel chair, to helping Johely with Brennan to offering comfort to Johely. In this revealing moment he and my sister Amy, proved time and again to be our bedrocks of support during our stay. Amazing familial support, to be sure.

During my visit, the fantastic head of PICU, Dr. Gelman showed me X-rays of Brennan’s lungs and explained in great detail the particulars of his condition and treatment. Going forward, the course of treatment for the fluid in his lungs entailed the use of narcotic sedatives with a breathing tube inserted in his throat and hand restraints to prevent him from pulling out any tubes. These narcotics are highly addictive and led to a longer stay in the PICU, since he would have to be weaned off gradually.

In the ensuing days, I was discharged after 3 days, and there was a changing of the family guard as Bob and Amy returned home after their nearly 9 day “vacation”, Johely’s mom came back down for a few days with Kyle (she had gone back to our house with him to maintain some normalcy for his school and schedule) and my cousin Leann helped attend Brennan’s bedside. All the while, my Mom was present and helped me and Brennan to recover. Johely rarely left his side.

 

Each day for both of us marked improvement, some days better than others. Brennan’s creatinine went from 4 prior to transplant, to 2.6 immediately after the surgery, 0.6 one week after transplant down to 0.3 after about 10 days- Brenny’s kidney was working great! One of our favorite nurses back at our regular hospital texted Johely and told her to call a number provided in the text. When she called, it was evident she was on speaker and on the other line were many familiar voices; she was speaking with all of Brennan’s regular nurses at Miami Children’s Hospital. “Okay, tell us the creatinine.” Johely responded with the low number of 0.3 and a cheer went up over the muffled connection.

During a moment Johely and I will never forget, we were sitting bedside with him and she was holding his hand (he really cherished everyone holding his hand and we all took turns). He first turned to Johely and uttered, “Thank you Momma.” Moments later he took my hand and repeated a similar sentiment, “Thank you Da-da.” Wow. Was he really that aware at age 3 what he had gone through and he had the presence of mind to thank us?

Soon, with his lungs clear, breathing tube removed and coming off the narcotics we were to be transferred to the recovery floor for transplant recipients as we started to see the familiar but “new” Brenny. On day 8 post transplant Brennan looked good enough to have a brotherly reunion with Kyle and the familiar bond that ties them as brother was immediately evident again as they both smiled and laughed for no other reason than being brothers and boys.

The PICU, we have found, is the grinding stone of the hospital; wearing you down with unrelenting stress, dimly lit rooms, constant beeps and interuptions. Time here moves slowly and it is easy to lose track of the days with 2 days feeling like a week. Usually I am hesitant to name caregivers by name for privacy issues, but these individuals are true professionals and deserve the highest recognition in our opinion for their role in healing our son. This stay, was made more tolerable by the many, many excellent and caring nurses and doctors we met during our stay there; Dennis, June (with her kind smile), Sheila, Curt (always looking out for Brennan’s best interests), Lynette and Sandra (amazing!). One particularly warm story remains etched in our minds from his early days in the PICU. Sandra a night nurse bathed, checked vital signs, monitored him through the night and made Johely go to sleep. Johely swears Sandra didn’t take a break that evening; all night constantly tending to Brennan.

 

After another 6 days on the recovery floor and soon we were driving home for a reunion with Kyle. The adjustment at home encompassed his new medications and his nutrition. Currently, he is on about 11 medications but this will reduce in the near future as he and the kidney grow stronger but he will always be on immunosuppressants.

For the first month, following discharge we go three times per week for blood work to make sure his immunosuppressants are at prescribed levels. An adult kidney in pediatric patients needs to be sufficiently hydrated which we can accomplish through his G-tube (tube in his stomach). However, he needs to start eating by mouth and we will start speech therapy in the coming days. Our challenges remain, but we will persevere with our faith, hope and courage. Even now, we notice that Brennan is talking more and seems to have a more favorable countenance.

 

On my first evening following my surgery, on the 6^th floor, a charge nurse entered my room and upon learning why I was there scribbled on the board “Our hero.” I humbly submit that I am not the only hero here and two quotes come to mind regarding this. The night prior to surgery, I thanked my gathered family for their presence and help with everything we were about to experience, to which Bob replied, “It takes a village.”

A grandson of a World War II veteran once asked, “Grandpa, were you a hero in the war?” The once decorated brave soldier replied, “No…but I served in a company of heroes.” Obviously, organ donation is not akin to war but it is important to recognize all of the heroes who made this possible during our 18 day stay in the hospital and they all deserve praise and thanks!

Because Brennan received a living donor organ, in effect two lives were saved on that day, August 21st. His life and the child’s life below him on the transplant list, who maybe does not have the benefit of a close family member genetic match now moves one step closer to a lifesaving transplant.

Those of you who have read this blog through the years realize we have never used this as a political forum nor do we intend to do so now. However, it is important to point out that in the recently passed Affordable Care Act there are two key provisions that impact Brennan and could someday affect your own son or daughter. First, there is a provision that prevents insurance companies from imposing a “cap” on how much money a patient’s care may cost. If there was a cap in place, I would not be writing this blog from a computer but on cardboard on the side of the road begging for money.

Second, no denial for preexisting conditions by insurance companies. Think about the hand we are dealt at birth and how much health can be taken for granted. As a parent, I rest easier at night knowing my son will not be prejudiced against by insurance companies for having a condition for which he had no choice. Now if you are reading this you know someone who had an organ transplant-please consider this when some politician tries to politicize health care for the sake of another election cycle and ask yourself how would you vote if you had a child or loved one with a chronic illness or special need.

There is still work to be done as it concerns transplant patient rights with glaring inequities in the system. This article is a perfect description of that from the National Kidney Foundation website.

http://www.kidney.org/news/ekidney/august12/a_mothers_journey.cfm

In brief summation, it points out that Medicare does not cover the cost of post transplant drugs 3 years after transplant and some insurance companies choose not to cover these vital drugs. So instead of spending $19,000 per year for the drugs, the patient goes back on dialysis where the government picks up the tab at $77,000 per year. It is a short article and well worth your time.

 

We considered changing the name of the blog to “Brenny’s Bean” but the legal headache of going through all the paper work was daunting. Not really, nothing trademarked here. Metaphorically, we like to think of the Beans as all of you who have collectively helped us along the way. Two of Brennan’s angels in particular, Dr. Ciancio and Dr. Paredes deserved the highest praise and thanks. Without them and God, well we would not be here right now. Thank you all and watch for the next exciting and hopefully shorter blog entry coming soon! God Bless!!

And so...we wait.

On June 10, Brennan turned three and we celebrated by allowing him to go swimming in our pool after receiving the "a-okay" from his doctors; our fears regarding infection were assuaged and he absolutely loved it.

In July at a routine doctor visit, his urine sample was high in white blood cells and just as we were leaving Dr. P.'s office to go home, we noticed pus in his diaper an almost sure sign of a urinary tract infection. We were ready to leave with a prescription for antibiotic treatment at home but discovered his BUN was 96 and creatinine was 4.7, the highest numbers yet for him.

After avoiding the month of June for hospital stays, we were admitted for IV fluids and antibiotic treatment. Strangely, the urine culture did not show any growth, thus no definitive conclusion on his urinary tract infection; although the antibiotics did the trick. The IV flush did the trick on both fronts with the BUN lowered to 67 and his creatinine down to 3.7 (Photo above of Brennan on the left and Kyle on the right hamming it up at our recent hospital stay).

In October, we will be on the transplant list for 2 years. We hope, the call comes any day, that some unfortunate family makes the difficult decision to give the gift of life. It is a tough thing to wish for, to be sure. Currently there are 15 children in the state of Florida under the age of 5 who are on the list waiting for a kidney transplant.

We thank all of you for thoughts, hopes, well wishes and prayers! We will keep you updated as things progress.

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!