Happy Holidays from us, at home this year!

What a difference a year makes and how far we have come. A cheerful plastic reminder of this thought greets me when I walk in our house in the form of a plastic snowman and Christmas tree we purchased at Walgreen’s last year to bring some sense of holiday to the Pediatric Intensive Care Unit space we occupied. What a sense of relief to know that we are able to spend the holidays at home!
Much has transpired over the past few months and we have waited for several plot lines to play out before boring everyone with the perpetual fluidity of the situation. As of this writing, Brennan is doing well and is stable.Talking, starting trouble with big brother Kyle and having fun like a normal 2 year old. His blood chemistry is adequate. We have now been on the transplant list for over one year and this avenue of treatment is our first preference, where he would receive a “block transplant” of two kidneys from a similar sized child. Kyle recently lost his front tooth and rejoiced at the $5 under his pillow from the tooth fairy.

The main subplot playing out on this end included Johely and I being tested for donor compatibility and to determine if we can live with one kidney.  This process began in mid-October and after taking 52 total vials of blood from both of us, being injected with iodine and analyzing 24 hour urine collection specimens, we now finally have some results and direction. For now, Johely has been ruled out due to an abnormally small kidney that has slightly inhibited function, nothing serious we just do not want to take the chance that Brennan may need another transplant sooner rather than later. This is a link to a very touching story about organ donation and how it touches so many lives. http://video.nbcsports.msnbc.com/nbc-sports/45788262

After undergoing the requisite tests, I performed an additional test in the form of a kidney biopsy to validate my donor status. This required a one-night hospital stay on my part (ugh!) and this time I was the being poked and prodded. And the verdict is….Yes! I am an eligible donor for Brennan! We now breathe a little easier as we have two potential options available. The reason for this being the second option is twofold. First, the size of my kidney at this point might be a little too large for Brennan anatomically and physiologically. The surgeon is confident he can make it fit but for the latter, the concern would be if Brennan became sick and dehydrated the need for hydration and required blood flow in a larger kidney may be more than he can supply during bouts of illness thus resulting in possible rejection.

Recently, we had a brief two day stop over at the hospital just prior to Christmas for an “oil change”. We noticed he was throwing up more than usual, waking up at night and refusing to take in formula by mouth. By hooking him up to intravenous fluids for 36 hours it seemed to help him; he is more active, not throwing up and thankfully sleeping through the night. Nothing like being home and healthy for the holidays. A sentiment echoed by Kyle that morning running around the house and playing with toys proclaiming, “This is the best Christmas ever. We are not in the hospital.”

In early January, Brennan will have a dermoid cyst removed from his right eye orbit. A fairly simple procedure that is typically done on an out patient basis where a one inch incision is made underneath the eyebrow and the cyst is removed. However, since B tends to retain fluid after being under anesthesia this may be a 2 or 3 day hospital stay. If allowed to grow too long it could become part of the bone and that is just another subplot we do not care to experience. 

It looks like 2012 will be an exciting year. We are gaining every day and experiencing milestones as we go; we are going to get there! Thanks again for all of your support, prayers and well wishes; all of it helps! Happy Holidays and Happy New Year!

  

We continue to march on and experience milestones...Pee-pee in the potty for the first time! However, Brennan's most recent bloodwork results from mid-September reveal a slow decline in his kidney function. Namely, his BUN is at 72 and his Phosphorus level is at 6.

For quick reference, the  BUN is a measure of the amount of nitrogen in the blood in the form of urea, and a measurement of renal function. Urea is a by- product from metabolism of proteins by the liver and is removed from the blood by the kidneys. In normal adults this test reveals levels of 7 to 21. The Phosphorus level should be less than 4.

To corral his numbers, we continue with the g-tube feedings approach of dilution whereby he takes in 1.5 liters per day of formula. This, coupled with a daily injection of growth hormone has enabled B to currently weigh 29 lbs (50% for his age bracket) and stand tall at 85cm (solid 10%-meaning that 90% of kids his age are taller).

The Phosphorus issue is a new one and we just started a medication usually reserved for dialysis patients to prevent this from increasing further.

In the big picture, we continue to wait for a potential cadaveric donor but we are acting now to implement Plan B should the need arise. That plan of course, is Johely or I donating one of our kidneys. Since we know we are both ideal matches for Brennan (me- 5 out of 6 genetic markers and Johely 4 out of 6) in the upcoming weeks and months we will initiate testing to substantiate the possibility of either of us surviving with one kidney.

Nearly every doctor, nurse and healthcare professional we have interacted with have advised us to wait for cadaveric donation. They all speak from their experiences. However, we refuse to allow B on dialysis again and we have been on the Transplant list for nearly 1 year. If his numbers continue a slow downward spiral we are ready to step in and supercede any crisis and dialysis.

From an outsider's perspective, aside from his somewhat yellow teeth, one would never know anything was wrong with him. He is like any 2 year old boy complete with smiles, giggles, amusing moments, bumps, bruises and of course temper tantrums. As much as this blog is about B, we try to weave a narrative about all of us into it, particularly the bond that B and Kyle share.

Kyle is such the brave big brother who takes B's shoes off upon coming into the house after returning home from weekend errands entirely of his own volition. B is perfectly happy imitating anything big brother is doing and knocking over his toys when he tries to play with them.

Being a parent can be trying, to be sure. Sprinkled in among the trials and troubles we face are rewarding nuggets. Just the other day we sent Kyle a note in his lunch box telling him how much we love and how proud we are of him. Johely picked him up from school and informed her he received the note and thanked her. Then, silence. Johely peered in the rearview mirror and noticed he was crying. She asked why.

"Mommy it makes me feel good that you and Daddy love me so much."

Never under estimate the love you show to your child, even if it is a simple note in their lunch box. Stay tuned for updates!

Happy 2nd Birthday!!

Indeed, time does move faster than we can often comprehend. Brenny turned 2 in June and has been doing fantastic. His birthday celebration was fantastic and presented an excellent opportunity to evaluate everything this very courageous boy has endured and to cherish the smiles and laughs he brings to us on a daily basis.

A stomach virus made the rounds through the family in early July, laying Kyle up sick for a week followed by a 6-day hospital stay for Brenny, underscoring the very fine line we walk trying to avoid dialysis and wait for transplant. The virus for Brenny was relatively minor (no fever) but severe enough to prevent him from ingesting the necessary volume to maintain his blood chemistry.

While in the hospital, he was fed intravenous fluids helping to flush out his system of the stuff his kidneys cannot. The challenge with Brenny as with any 2 year old in the hospital, is establishing an IV. He went through 5 in his first 4 days and fought every attempt.

During this stay we noticed his personality starting to evolve into one of happy, say hi and bye to his favorites and blow kisses. That is, until the IV team or phlebotomist comes around and then he earns the respect of those individuals and has become known as a, "hard stick" and a fighter to be sure. It routinely requires 3 to 4 people to hold him down during these times. As much as it breaks our heart to put him through these necessary drills it strengthens our hope and resolve that he is such a strong fighter.

Being in the hospital enabled him to undergo some tests that needed to be done. Most notably a brain MRI to evaluate the after effects from his stroke and seizures at the beginning of the year. The result is that we will continue to administer a very low dose of anti-seizure medicine as most kidney patients are susceptible and continue to observe.

Secondly, a test to determine the degree of reflux (or backing up) in his urinary tract. When he was first diagnosed with kidney disease a urinary tract infection alerted us to the underlying condition. This was due to severe reflux in both ureters, grade 5. This time when the test was performed, only one ureter had the grade 5 reflux. Definitely good news since a urinary tract infection can further damage what little kidney function he has left.

We start speech therapy to help with his food aversion in early July, since all kidney patients have this condition.

Thanks again for all your support, prayers and well wishes!!

Hunger Strike!!!

"Daddy."
"Yes Kyle?" I replied struggling to find a stronger cell phone signal in the confines of Miami Children's Hospital (MCH).
"When are you coming home?"

 

"It shouldn't be long this time", I responded, finally finding a strong area to occupy much to the chagrin of the environmental services attendant, Maria, as she tried to sweep the floor.
"Daddy, I need you to clip my fingernails."
"We will be home real soon."

True to my word, Brennan, Johely and I returned home after a short 4 day stay at our home away from home. This time, the impetus for our visit was much less urgent but important nonetheless. And, Kyle's finger nails didn't suffer from our absence.

Since we left the hospital in mid-January, Brennan had been doing fantastic. Gaining weight, eating and being a typical toddler. All the while, we fought the nose tube (NG tube for nasogastric tube). It turns out, little B was a Houdini at spitting up the tube placing us in the position of becoming NG placement home specialists. Not a duty we coveted. Alas, he needed it to satisfy his required fluid intake.

In late February, after another episode of expelling the evil NG tube, he decided he would take the requisite amount of formula by mouth only! Glory day! He was so happy without the tube and he eagerly consumed the proper amount of formula and his bloodwork results were great!

One early March day he awoke from a nap and decided not to eat any more. Back in with the NG tube. But that was a supreme struggle to keep it in longer than 24 hours. In the ensuing days, his intake decreased and his general demeanor was not the same.

After talking to Dr. P and doing bloodwork locally in West Palm, which was not very good, we decided on a trip to MCH for some IV fluids and to discuss the possibility of the placement of a G-tube; a direct access to the stomach and...another surgery. Not something we were so inclined to concede.

However, without the required volume the only alternative would be a form of dialysis. After discussing further with Dr. P the advantages we decided to undergo the procedure. Three short days later, we were home and B was recovering nicely and hitting his target intake.

With the G-tube, we can do a bolus or a large quantity feeding in a short period of time through the tube along with medication. In early May the tube will be replaced by a MICKEY or a low profile plug type implement. He can swim, go to the beach, run around or sit on brother's head! There is a reduced possibility for infection with g-tube than with the dialysis catheter he had before.

Things are starting to become normal again. Kyle is almost done with school this year. Brennan is tearing up the house and harassing big brother. Work is keeping Mom and Dad busy.

We met with the transplant team in April and things are moving forward as we accumulate time on the list, the longer on the list for a baby the higher the priority. We are standing on "G" waiting for "O" for the transplant call. http://www.miamiherald.com/2011/05/04/2201358/child-ready-to-go-home-after-receiving.html

The ironic thing with Brennan is that he looks healthy, plump and very, very active so when we see a new doctor for the first time, we are met with skeptical queries. After detailing everything he has been through, they quickly understand.

Thanks again for all your prayers, well wishes and support! I know it has been some time since the last blog but I will now update the first week of every month. The less I need to write the better the news will be and I will fill the space with pictures! 

Learning to walk..again

Hello all!

A few days after our last update we embarked on an unexpected stay of 50 days in the hospital that covered Thanksgiving, Christmas and New Year's and encompassed emotions, of which we have never experienced- from dark to darker, to darker still and then finally a beam of light began to shine in the form of a wry infant smile and we emerged once again; stronger and more determined to make him better than before and ready for future challenges (of which there will undoubtedly be).

First, the executive summary followed by a more detailed account.

• On November 16 we were admitted at the hospital for possible infection of Brennan's peritoneal catheter. We went home on November 18 with no adverse effects and no concrete diagnosis relating to the redness around the insertion site of his catheter.
• After results from earlier tests indicated a potential bacterial growth from a culture taken during our first hospital stay we returned the day before Thanksgiving for a follow-up sample and found evidence of infection in his peritoneal cavity (peritinitis).
• November 24 we are admitted and begin treatment for bacterial infection origin unknown at this time.
• A course of antibiotics is begun and he experiences severe diarrhea while he is also placed on IV fluids to balance fluid loss.
• Insertion of an enternal gastric feed tube through the nose to receive better nutrition.
• After 5 days the culture produces the same unknown bacterium.
• Dr. P asks Dr. R of infectious disease expertise to stop by. He looks at Brennan's catheter site, presses on it and pus is expelled-the catheter itself is infected.
• One hour later, Brennan begins a septic reaction and goes into shock; and suffers a seizure.
• We are moved to ICU; Brennan does not sleep that night, just staring blankly at the ceiling.
• Infectious disease doctor begins a more aggressive approach of antibiotic treatment and has a general idea of the nature of the bacterium.
• Surgeons remove infected catheter the next day.
• 2 days later a hemodialysis catheter is inserted into his jugular vein since his blood chemistry is beginning to deteriorate. He undergoes his first course of hemodialysis treatment.
• 2 days later Brennan suffers a seizure; MRI shows signs of damage from a stroke. He does not smile or show any emotion. 
• Bacterium is finally identified by a lab in NY; treatment with antibiotics will last for 6 months.
• 2 weeks after stroke- Brennan smiles at one of his favorite nurses for the first time.
• He begins to move extremities more, but not his right side.
• Just before Christmas, we are moved to the recovery floor. He now weighs 15.5 lbs.
• Christmas day in the hospital he begins to sit with help and scoot, still clenching his right fist.
• We are discharged on January 8, he weighs 21 lbs and we go HOME!!
• We return for scheduled medication infusion through hemo-catheter on Jan. 20; Brennan suffers another seizure.
• We are admitted again and hemo catheter is removed.
• MRI shows no evidence of stroke from recent seizure.
• Home again on January 23!!
• Brennan begins to walk again....January 28!!!

While these past months have not been easy, we are blessed with 2 beautiful boys and not many parents get to see their child walk for the first time-twice.  

In mid-November, we noticed a red appearance and some clear discharge from the insertion site of Brennan's peritoneal catheter and went to the hospital for tests and were admitted for a couple of days, but he showed no outward signs of infection and remained his jovial self. Blood cultures were taken and incubated with no immediate results. We went home and began a course of antibiotics we administered at home through his dialysis procedure.

Nearly a week later, our dialysis nurse, Sheree, called and informed us that the culture they took produced a growth the pathologist was not familiar with. On the day before Thanksgiving, I loaded up the car and made the trip to Miami with Brenny and my mother in law for what, at the time, I surmised would be a quick blood test and sampling of his peritoneal fluid and then home and hopefully beat the holiday traffic.

Except when Sheree pulled the peritoneal fluid from his catheter it came out cloudy. A sure harbinger of infection. Confounded, my jaw dropped and I felt my face go hot and flushed. Peritinitis is a serious matter and requires antibiotics to treat. We had just completed a course of dialysis the night before and the fluid collected from that was clear! How could this be?

Dr. P was present for the sampling and she immediately went into action securing admission for Brennan and charting a course of treatment. At the same time, Brennan's body temperature literally began to increase while I held him in my arms as the infection had finally begun to manifest itself completely in his body.

Johely hurried down, leaving work early and we began our 50 day stay in the hospital. I told her to pack for a week, a gross under estimation on my part. It was determined that Brennan was not taking in enough calories and thus would require an enternal feed tube through his nose into his stomach.

For the next week Brennan's condition did not improve. Lots of diarrhea and fever but he had energy and seemed like himself. Because he was not getting better coupled with the unknown species of bacterium, Dr. P felt compelled to call in a infectious disease expert. Dr. R. just happened to be on the floor late one Tuesday and Dr P noticed him walking down the hall and flagged him down and gave him a quick synopsis of Brennan's status. All of the blood and peritoneal cultures were taking 5 days to grow the bacterium in question.

Dr. R came in to see Brennan and examined the catheter site and pressed on it and expelled pus. Prior to this, one doctor was ready to send us home the next day! Earlier in the day we had noticed Brennan shaking every now and then, which we believed to be a product of his periodic fever. Now, looking back, he was in the early stages of sepsis with the shaking. Had we gone home...

Dr R's examination hastened the release of the toxins from the infected site and set into motion a cascade of calamitous events that would result in the very unfortunate instance of a medical "perfect storm" that threatened Brennan's life. A few hours later, Brennan went septic with shock and experienced what we now believe to be a seizure in addition to the sepsis. That night, we were moved to the ICU and scheduled for surgery the next day to remove the infected catheter.

The sepsis and seizure left him listless and sleepless. He just stared at the ceiling and slept in 5 to 10 minute spurts, not moving. With the infection and antibiotics Brennan had kept us up the previous 2 nights, in alternating shifts, changing his diaper trying to stem the onset of a serious diaper rash. This would prove to be a key factor in the perfect storm he was experiencing, despite being on IV fluids.

A couple of days later, with his lifeline for dialysis gone with the peritoneal catheter and his blood chemistry beginning to show signs of decline; a very skilled surgeon, Dr K, inserted a hemodialysis catheter into his jugular vein. Hemodialysis is a very serious form of filtration and is typically not performed on babies.

After catheter insertion, that evening, Dr P joined us in a darkly lit ICU isolation room for an initial course of dialysis. A large portable dialysis machine was brought in, not necessarily made for babies this small with concerns of pressure and clotting. After making the appropriate connections and safety checks Johely and I looked on, as our son's blood left his body through a clear tube and entered this machine with spinning components on the front and slowly returned to his body.

Our fear at the time, beyond the inherent risk mentioned above was that patients on hemo, have a reduced success rate of transplant longevity. And with him being so small, an uncertain future was in the offing as Johely and I were overcome with sadness and exhaustion as the dialysis machine whirred and filtered and we continued to watch as Brennan's blood traveled the circuit from body to catheter to machine and back again.

Back home, Kyle was in the capable care of my Mom and sister (and ultimately various combinations of Aunt Mary, cousin Lauren, Aunt Leann and Jamie Lynn) while trying to maintain some sense of normalcy. At his school, his teachers, Mrs S and R kept a watchful eye over him and kept us informed of his activities. Mrs S and her husband made numerous trips to come down and visit and deliver care packages during our stay.

On Saturday night, December 3rd the perfect storm within Brennan's body reached its apex and near midnight Brennan had a seizure and he was hurriedly brought down to radiology for a CAT SCAN revealing a blood clot in his brain. The MRI the next day, revealed signs of a stroke.

The news was somber. I turned to Dr P and asked her, "will he be Brennan again?" Yes. She assured us he would. The time table they offered was along the lines of a year or two.

Turns out Brennan is atypical in his kidney condition in that he frequently urinates, most End Stage Renal patients do not have this capability. This coupled with the severe diarrhea, sepsis, and small veins (most kidney patients have this condition) led him to suffer a stroke from the blocked vein in his brain. That night, Katy and Vivian from the ICU closely monitored Brennan's blood chemistry and fluid intake and output as Dr P was phoned every 2 hours with updates, tinkering with IV solutions and apportionment.

In the interest of maintaining normalcy for Kyle, we decided I would go home and return to work while Johely stayed in the ICU with Brennan. All total only leaving his bedside about 6 hours one night in the 50 day span to attend Kyle's Christmas program.

A bevy of doctors were now tracking his progress; neurology, hematology, infections disease and of course nephrology. As the days in the ICU passed, it was obvious that a blood transfusion would be required since his hemoglobin levels were now below the acceptable limit. Yet, another concern with transplant in mind since the introduction of a foreign blood source can lead to the production of antibodies. For this reason, since Johely and I are compatible donor candidates for him, we cannot donate blood to him since if he were to receive our blood now, he would build up antibodies to our blood and then upon receiving one of our kidneys the possibility of rejection could be increased.

About 2 weeks later, Sheree came to visit Brenny and he flashed his first smile since the perfect storm. He was responding to treatment. The light in our situation began to shine once again.

Finally, the bacterium was identified in a lab in NY as Mycobacterium cholenace abcessus. Dr R was correct in his first instinct concerning the bacterium and his course of treatment had begun to defeat the bacterium and Brennan slowly improved. By this time, his weight had gone from 18.6 lbs down to 15.5 lbs and he was still very weak.

Soon, just before Christmas as his condition continued to improve Brennan was moved to the floor for recovery and we were out of the ICU. We purchased a small Christmas tree and brought the gifts down for the boys and spent the holiday with Kyle and my Mom in the hospital room. At this point, Brennan was beginning to sit up for very brief periods of time. He drank water from a syringe sparingly. 

A week after New Year's a plan was formulated by our doctors to allow Brennan recuperate at home. Since that first night after hemo catheter insertion, Brennan did not require dialysis! The feed tube was providing adequate calories and volume resulting in his kidneys being aided by the volume of formula and improving his blood chemistry. The solution to pollution is dilution and the feed tube was his saving grace and his crude medium for dialysis!

He was receiving antibiotics intravenously every couple of days, although we were having trouble keeping IV lines in him due to his small veins, we were allowed to leave and return on an out-patient basis and the antibiotic would be infused through his hemo catheter since it was not being used for anything.

On January 21st after our next to last infusion (another 10 minutes and we would have been in Miami traffic), Brennan suffered a seizure, landing us in the hospital for the next 4 days. During this episode, I pleaded with him to fight while my mind raced and thought, "here we go again". He was just starting to walk again.

As we entered the ICU, again, he awoke after about 45 minutes although nurses told me he would sleep  4 to 5 hours due to the medication. He immediately began trying to rip off the oxygen mask they had placed on his face. We all sighed a very, very heavy sigh of relief.

A follow up MRI revealed no signs of a stroke and we returned home a few days later, now on anti-seizure medicine. The thinking is that since his brain is still recovering from the stroke coupled with the antibiotic, it led to the stroke. Thankfully, the hemo catheter was removed during this visit. Brenny's Beans are on their own!

As for the source of catheter infection, we will likely never know since bacteria is everywhere. As a precaution we will install water filters and a UV light on our water main. One key component of infection is the presence of a site such as plastic catheter for bacteria to colonize. Without that, the likeliness of infection is greatly diminished. Hence, with the success for nutrition of the feed tube, we removed the hemo cath

It was our feeling that we would give Brennan my kidney ASAP. However, with his small veins, it is unlikely at this juncture he could supply enough blood to my kidney, so we wait for the "call" on the list.

Just last week Brenny weighed in at a whopping 22.7 lbs and his blood work looked good. We will continue to hope and pray.

Cherishing every moment with our boys now more than ever, the thing that has moved us is the unremitting kindness of family, friends, nurses, doctors and strangers. It is difficult to put into words what this means to us. Perhaps a simple thank you will suffice. So, thank you to everyone who has been there for us. We are deeply indebted for your prayers, help, love and support!

I would be remiss if we did not mention our fabulous employers and co-workers who have displayed unyielding support and kindness through these trials. Thank you, as well! 


The Jackson Brothers (look at that tongue)!



Post Dated: November 9, 2010

Hello family, friends, co-workers and the like!

Wanted to provide an update regarding Brennan's status for everyone, since things have changed, mostly for the better, in the last couple months.  On September 4th, we traveled to Jackson Memorial Hospital and met Dr. C, a transplant surgeon. He wore a patch that depicted what looked like a mythological creature on his neatly pressed white doctor's coat. Dr. C hails from Venezuala and was very accomodating and truthful with us during our consult. The patch he wore, a symbol which everyone in the transplant department wears on their uniforms is a chimera, a Greek mythological, fire-breathing monster, commonly represented with a lion's head, a goat's body, and a serpent's tail. The term also describes one who has received a transplant of genetically immunologically different tissue. Brennan is now officially one of over 72,000 people in America waiting to be considered a chimera. The best piece of advice Dr. C gave us was not to forget the sibling, he had seen it happen too many times before. Go live life, he said. And so we will!

First, a quick summary and then if you have time, more details follow below.

1. On July 4th, Brennan was fitted with a peritoneal catheter (in his abdomen) in preparation for in-home dialysis since his kidney function had decreased to less than 10%.

2. While at the hospital for this procedure, all of the necessary scans, tests and X-rays were completed in preparation for application onto the transplant list at Jackson Memorial Hospital.

3. In mid-August Johely and I begin training at Miami Children's Hospital for in-home dialysis procedures and Brennan endured his first round of an abbreviated dialysis procedure at the hospital on an out patient basis.

4. In early September, we met with the transplant surgeon at Jackson Memorial Hospital and awaited a required consult appointment with the pediatric nephrologist there for official submittal of his name on the transplant list. They withdrew 11 vials of blood from Brennan for tests. Johely and I were tested for compatibility.

5. In mid-September, we completed our dialysis training, received all of our supplies and are ready for the procedure at home. We perform the procedure while he sleeps for approximately 6 hours per night three nights per week.

6. After excessive red tape, appointments and gnashing of teeth, on October 28th Brennan is officially on the kidney transplant list!!!!

And now for a more detailed update...

All through this journey, our guide, sage and calming voice has been Dr. P (pediatric nephrologist). She is simply unbelievable; she tells us to call her cellphone during times of questions! She has recommended all along to place Brennan on the transplant list and hope for a cadaveric block transplant, whereby Brennan would receive 2 kidneys from a similar aged donor so that he can grow with the tranplanted kidneys. Babies are bumped to the top of the list. Her reasoning behind this is sound; he is at the top of the list and he is fortunate that his health is good and we have time to wait, especially since he is responding well to dialysis. With multiple transplants likely in his future, we are taking advantage of his age and placement near the top of the list.

During this application process, Brennan's size, 18.5 lbs, was the biggest concern of others on the transplant review board, since a weight of 22 lbs is preferred. Dr. C dismissed this with a waive of his hand and proclaimed he had done babies smaller and skinnier than Brennan.

In case of emergency, Johely and I have been tested as potential donors. I have 5 of 6 genetic markers for a match and Johely has 4. Fortunately, Brennan's Panel Reactive Anitbodies are low, 0 on a scale of  0 to 99 with 0 being the least reactive. This a measure of how receptive his body will be to the transplanted organ. Those with higher scores are bumped down the list for fear they will be likely to reject the transplant.

So, we hurry up and wait for the "phone call." There is a chance that we are called to the hospital in Miami and go through all of the preparatory work and be sent home without a transplant. This is what the medical folk term a "dry run." When the hospital receives an organ they call in several potential donors. Patients' status is constantly changing due to sickness, and other factors. Therefore, to make sure someone receives the organ several candidates are called. Not everyone goes home happy and there have been reports of violent confrontrations when someone has gone through all of the mental anguish of kidney disease and heightened hope of a transplant only to depart without a new organ.

We have encountered some fascinating people and learned of some fascinating stories,along the way who have received and given the gift of life. We met a woman who has a cadaveric kidney for 14 years transplanted by Dr. Ciancio.

We heard the tale of the woman who lost her son who was in his early 20's and he gave his heart to a gentleman of nearly the same age. As time passed, the donor's mother agreed to meet the man who received her son's heart and upon their first encounter the woman placed her ear to the man's chest. She said she wanted to hear her son's heart. Over time, they became close and now, the woman acts like a surrogate grandmother to the man's children, even picking them up from school. 

A woman in her late 30's, lost her daughter in a car wreck on I-95 in Miami when the girl was only 14. At first she hesitated at the thought of organ donation. She reconsidered and her daughter's organs helped save the lives of 5 different people. The woman was devastated, but happy that her only child could help so many others. About one year after her daughter died, she found out she was pregnant, which was a huge surprise because she didn't think she could have children.

We thank you all for your prayers, support and well wishes. Keep Brennan in your prayers and hearts as he travels this unbelievable journey!

Post dated: June 23, 2010

Hello everyone!

June 10th marked Brennan's 1 year birthday complete with a big birthday bash and magic show! Since it has been a few months since our last correspondence we wanted to present an update to everyone.

Currently, he has passed the 17 lbs mark! Certainly, to this point, his weight gain has been an uphill battle and continues to be so; but we are gaining! Kidney babies have vomitting problems and this is the case with Brennan. It presents problems for his food intake and his weight gain, but we are trying to manage this and compensate. Essentially, if he throws up, we feed him again. We used to wait for his tummy to settle, but after he throws up he is fine and will happily take more food. As of now, beacause of his condition, Brennan is a vegetarian; he simply cannot process animal protein. So, no cheese, ice cream or meat....yet.

In recent months, his blood analysis has revealed that his creatinine level has increased from 2.0 in April slowly increasing to 2.4 in early June resulting in a simultaneous decrease in his kidney efficiency from 15 to 13%. This is not good news, but realizing that everything pertaining to his condition is relative, it is not all bad news either. The reason this is not all together bad is his activity level.

Beyond his blood analysis, we monitor his energy level very closely and I can assure you that he wears us out! He is constantly on the go, crawling, exploring, and beginning to stand on his own, much like other 1 year olds. In fact, there is not much difference from other babies his age.

Dr. P, our nephrologist, continues to provide fantastic guidance and helps to provide a beacon of hope to us when the day seems dark (as they sometimes do although infrequently). Case in point from last week; we had a cold virus run through the family that everyone fought last week. For Brennan, it was a fever and a general under-the-weather feeling. Often, a fever may dictate a potential urinary tract infection which would be a very bad thing for his condition. Fortunately, Brennan had bloodwork and a urinalysis the day before. A quick phone call to her office resulted in a prompt return call from her as she was on the road going to a conference telling us not to worry and she would double check the white cell count and the urinalysis. Then, she did what 99% of doctors do not do; she gave us her pager # and cell phone # and told us to call her if the fever goes over 103! Can you imagine a doctor doing that? She is unbelievable! We are so grateful she is on our side.

With the recent results of the bloodwork and the slight upward trend in creatinine and decrease in treatment efficiency (and the dark shadow of dialysis lurking), Dr. P has increased his caloric formula mix to 40 calories/ounce to speed up his weight gain (normal breast milk and store bought formula is 20 calories/ounce). Dr. P has decided the fastest course of action to expedite his weight gain is to continue to bottle feed him which limits the possibility of him eating solid food, since we constantly feed him and he is always full with the formula. Really, this helps him in two ways: weight gain and helps his blood work since the more volume he ingests the better his kidneys work. For now, he eats baby food once a day, but that is just to keep in practice and play with the spoon and get a taste of something slightly different

In August, Brennan will undergo some chest X-rays, ultrasounds on vital organs and a dye test in his urinary tract as sort of check up and preparation for transplant.

We hope to initiate transplant paperwork and testing in the fall, depending on his weight gain. We like to be optimistic but pragmatic at the same time, since there are certain to be bumps ahead in the road. Dr. P has told us, because he is a baby, he goes to the top of the organ recipient list. Johely and I are more than willing to donate but that depends on compatability and since throughout his life he will need multiple transplants, if he received a kidney from one of us, he would not be placed at the top of the list since he will not be a baby any longer. So, it seems the wise course of action would be to get on the transplant list, hope for compatability with another donor his age, from whom he would receive 2 kidneys and keep Johely and me in reserve in case of emergency.

As we close in on the 20 lb mark (when he is officially eligible for transplant), I can't help but think of what he feels. If he hurts, he sure doesn't complain. We also worry about post transplant and the inherent hurdles associated with that. But, kids are tough.

Look what he can do at 13%! There was a day last week when I was changing him and these thoughts were running through my mind, as they often do, and my worrying ways were heavy on my mind. In the course of this deep moment of  thought, I sealed his diaper and buttoned up his outfit, which depicted a smiling cartoon-like chimpanzee lifting a way too heavy awkward looking barbell over his head with the caption, "Stronger than you think."

Thank you for all of your thoughts and prayers!

Scott, Johely, Kyle and Brennan

Post dated: March 12, 2010

Hello everyone,

Wanted to take an opportunity and update everyone on Brennan's progress. First, and perhaps most important, he is happy, playful, active, has an appetite and is growing (15.5 lbs and 26 inches long)! These are some of the most important and positive characteristics to consider when kidney patients are involved. Encouraging for sure, especially his length, which has been increasing steadily, telling us that he is ingesting adequate protein. If these traits are not evident, then the dreaded "D" word (dialysis, of the peritoneal method) becomes a possibility. In light of his fighting spirit, and our determination to not let this happen I will spare you the details of this process, but wanted to let everyone know the challenges we face.

Another vital component of the equation regarding his kidney function are the results from his blood work. His most recent blood work looked good with the exception of his creatinine level 2.1, up 0.4 units from last month (a measure of the protein in the blood) resulting in a reduction of his kidney function from 17 to 14% this month. For perspective, in normal adults the creatinine level is 1.1 to 1.3 and if those levels approach his levels, one can be guaranteed a not so happy trip to the ER. With this in mind, it is amazing he can function and develop as he is showing. This increase could be due to: a little stomach virus, which was causing him to throw up a couple of times per day; and his intake of Stage 2 baby food with meat in it. It is possible that his new intake of meat products results in higher protein levels that he currently cannot handle. For this month, we are cutting out the meat and he is not spitting up as much, so it looks like he is turning the corner with that.

Other blood work results are currently and have been stable. Our doctor, Dr. P., spelled out the clinical definition of dialysis needs pertaining to these other parameters. These are included to give insight into the inherent complexity of factors that affect the kidneys and not intended to confuse, but outline some numbers to shoot for.

Parameter     Dialysis occurs if           Brennan's current numbers
Potassium    (anything above 6)          currently 3.8
BUN             (anything above 80)         currently 51
Bicarbonate (anything less than 15)    currently 23.5

As you can see, we are in the clear right now. Kidney patients who lose their appetite are fed through a feeding tube. We are determined to make sure that scenario doesn't happen either.

Dr. P. is, in a word, fantastic. She preaches nutrition, nutrition, nutrition. The more food intake he has, the better his numbers. Because the protein intake can be problematic we add carbohydrates and fat calories where possible. Normal breast milk or formula rates at 20 calories per ounce of formula. We mix his formula at 22 calories per ounce and then supplement that with a powder that contains calories in the form of carbs and fat for a grand total of 29 calories per ounce. A baby with normal kidney function would be on Weight Watchers with that caloric intake! Additionally, he eats baby food, not much, but enough to get used to it and add some calories.

In February, Brennan had a sonogram of his kidneys which revealed there has been no growth of his kidneys as may occur during the first 6 months of life. After 6 months, your kidneys stop growing; thus, the ability to receive a transplant at 1 year of age (20 lbs in body weight). At our last visit on Monday, we spoke with Dr. P. about the transplant scenario.

When he reaches 19 lbs he will go on the donor list and Johely and I can be tested for compatibility. At 20 lbs, he is eligible for transplant. The longer we wait while he is not on dialysis, the better his chance for a speedy recovery from the operation.

Projecting his current growth trend, he should hit 20 lbs in about 10 months, next January. If he goes on the donor list at 19 lbs, say in November of this year, there is typically a 6 month to 1 year waiting period for a compatible donor. There are rare occasions where a donor match can occur within the first few weeks of going on the donor list. If he receives a "block" transplant from a deceased donor, he would receive 2 kidneys instead of one. Because of his current caloric intake, the Dr. informed us that many kidney patients need to go on a diet once they get their new kidney(s) because they really start to put on the weight.

Right now, it is a bit of wait and see game as to which avenue we explore with the transplant procedure. It depends on so many factors. Our Dr. prefers the block method, but we will do whatever necessary to make him better! One thing is certain, he will need multiple transplants throughout his life. A live donor kidney is good for 20-25 years while a deceased donor kidney typically, does not last as long.

Another complicating factor, completely out of our control that we are watching closely, is the status of Jackson Memorial Hospital in Miami as it is currently $200 million dollars in the red. Generally considered a fine venue for transplant procedures, it is horribly mismanaged financially. The uncertain status of this hospital, which has the all important trauma center and organ transplant center (staffed by the very capable doctors from the University of Miami), is leading us to explore other transplant venues. Gainesville, about 4.5 hours away is a possibility. When notified of a viable donor compatibility, transplant must occur within 48 hours, so there would be plenty of time to get there. The recovery period can last from one week up to one month depending on the individual.

After transplant there will be the need for medication. The closer the match of the donor organ(s), the less of a need for immunosuppresant medication to thwart rejection.

In light of all of this, we are lucky. Dr. P. shares the horror stories of the little 4 month old girl with creatinine of 1.4 who was just recently taken off of dialysis, living in the intensive care unit since she was born and she won't take food orally, only through a feeding tube. And there are many more horrid tales and not just kidney patients. When we go to Miami Children's Hospital, once a month to visit Dr. P we see many children affected by various illnesses. Witnessing these scenes, makes us feel fortunate, especially when you see the look of helplessness on the parent's faces.

Dr. P reminds us that we are his biggest asset. So many children are abandoned by their parents when they find out a transplant is required!

We consider every day a victory. Keeping it in a day to day perspective allows us to concentrate on the moment with him and focus our efforts on helping him grow, learn and eat (did I mention eat?). This is not to say we are without a few bumps and hiccups in the road and we can get frustrated; after all we are only human.

But to see him.....He is so worth it.  Just this morning he awoke (he never cries when he wakes up) he just starts playing, and I went in to get him and there he is, standing up for the first time in his crib holding onto the side with that big dimpled smile, tongue sticking out and eyes twinkling with anticipation of a new day to learn, grow and eat.


Sorry for the long winded update, but wanted to keep everyone up to date. Keep us in your prayers, they are working!

Much love,

Scott, Johely, Kyle and Brennan

Welcome to Brenny's Beans!

INTRODUCTION

When our son, Brennan was initially diagnosed with Chronic Kidney Disease (CKD) end stage renal disease in July of 2009 at one month old, our nephrologist, Dr. P. advised us to stay off the internet. Stories from the digital highway can be overwhelming and depressing.
It is with this piece of advice in mind that we begin this blog primarily as a way to chronicle Brennan's amazing journey for the many, many family, friends, doctors and nurses and loved ones who have extended a helping hand to help "us" make Brenny better along the way. Should others stumble across this blog, it is our explicit wish that they draw strength and courage from everything that is written about our hero- "little B."
With respect to all involved and considering this is on the internet, only first names  of those mentioned will be used and in some cases changed to protect the privacy of all involved.

Please know that with all of your continued prayers, support and faith Brenny will get better!

The main characters in this blog are Mom (blog editor), Dad (blog author), brother Kyle (6), Brennan (19 months) and of course B's hero- Dr. P. We have learned much more than we ever envisioned concerning Chronic Kidney Disease (CKD) both clinically and emotionally.

The emotional tentacles of this condition weave themselves deep inside the family fabric and ours is no different. Because of this, we all are victims of CKD, but we will overcome. It affects Kyle on different levels nearly as much as it does Brennan. We all bare scars from this. Our determination as parents, is to subdue the severity of said scars and to protect our sons and raise them happily. 

Initially, when Brennan was diagnosed we sent out informational emails to update concerned parties on his status and they are included here as back ground information and post dated accordingly. Thank you to all for their prayers, support and words of encouragement.


The impetus for the title of this blog stems from the striking resemblance the kidney has in shape to - beans! Coupled with the possiblitly of an alliteration in the title, led us to coin it, "Brenny's Beans."