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!
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