Our Visit To Children's of Alabama

It has almost been a week since our trip to Birmingham to visit with the transplant team at Children's of AL.  It was a great, very informative visit.  It was also very interesting to learn the different protocols and opinions between the two hospitals and staff (AL vs Memphis). 
To be brief, they will be willing to transplant Maci.  There are a few things they need results on before they make a decision and we will not know those results for another week or maybe more.

1. They did an ultrasound to see the size of her veins/arteries where a new kidney would be attached.  The larger the diameter of the veins/arteries the better the flow of blood.  The better the blood flow, the better the perfusion of blood to the new kidney which is what we want. 
2. They are testing clotting factor.  Of course you want blood to clot when you have a scrape or a cut but if the blood clots too easily, there is a risk of a blood clot forming and cutting off blood supply to a new kidney.  Although the loss of Maci's first kidney was due to a blood clot, there were other factors involved.  In past tests, Maci's clotting factor has been normal and we are hoping that it has remained the same.  They tested for this last week also so that they had their own test.
3. A PRA test was done as well.  That's the test to determine the percentage of the ease or difficulty of finding a match.  Easier = lower percentage and the higher the percentage makes a match more difficult.  Maci's percentage after her kidney was removed was 98%, making it pretty difficult to find a match.  The transplant surgeon said the percentage can SOMETIMES lower over time so they tested for a recent percentage.  I asked about the process of desensitization.  UAB / Children's of AL does have experience in this but as I already knew from my research and inquiries, the surgeon reiterated how it is hard on the body.  They would be willing to do it IF it were an emergency situation but prefer to wait out a donor when possible.  Maci does well on dialysis at home, her labs remain stable with very rare and minor medication adjustments needed so in other words, don't rock the boat.  It was nice to know that it IS an option that they were willing to pursue if necessary.  It was not really an option in Memphis.  If Maci's percentage has remained high we were told it could mean a year or even longer on the transplant waiting list.  That was NOT surprising news and I am more than willing to wait for the right kidney in the right time.  Also, depending on her PRA results they could be willing to consider Rick as a living donor

This was a tired little girl on the way home
 from an 8 hour day at the hospital.

There were MANY things that I found impressive with Children's of AL.  COA works with the transplant team at UAB (University of AL Birmingham) adult hospital.  That's how it is done here, LeBonheur uses the transplant team at Methodist University.  The difference with COA is that they have an Adult Transplant Medical Director and a separate Pediatric Transplant Director (which is who we met).  Also part of the transplant team is the Director of Nephrology.  The Nephrologist (kidney doc) is involved in the decision making for kidney transplants!  The Nephrologists there do not just present a patient to the panel of transplant surgeons for potential transplant.  COA Nephrology is ranked #26 with US News and World Report and are nationally ranked in 8 specialties.  
The success rate for COA's pediatric kidney transplants are above national average.  They have done more pediatric kidney transplants at COA than Memphis (where as Memphis has a higher liver transplant average.  Maci doesn't need a liver.....just sayin.)
Another interesting, plus is that they perfuse the donor kidney while waiting to transplant.  Blood is pumped through the kidney while waiting to be transplanted, it is not kept on ice (Machine Perfusion vs Cold Storage) .  Researching the statistics to verify what the surgeon explained with perfusion vs ice, the kidneys statistically last longer after transplantation and are also beneficial in other aspects based on the kidney's "down time".  Another PLUS!  The surgeon(s) at COA also, as a rule, "tack down" the transplanted kidney to prevent mobility, specifically rotation.  They have more than one "kidney transplant" surgeon but unless the one who typically does the kidney transplants is out of town, he does the kidney transplants....it is not whoever is on call.  I sorta liked that but also hope when the time comes that he is NOT out of town lol.    

Overall, Rick and I were more than pleased with our visit.  We are not "shopping" hospitals or doctors to find just anyone to transplant Maci.  I also understand that we could go to THE best rated hospital and have a negative outcome.  I LOVE Le Bonheur, I love Maci's Nephrology team and I have no regrets with Maci's first transplant.  I believe that the transplant surgeons are skilled and played no role in the loss of Maci's transplanted kidney.  Out of the entire team of Memphis surgeons, there were a couple that I was particularly fond of and only one that I was not a fan of from the first time I met him and I never did become a fan.  The other Memphis surgeons had skills, knowledge and were also nice but apparently the one seems to think that personality isn't part of his job description.  UAB / COA is a HUGE place in comparison to Memphis and while bigger is not always better, the reputation they have is one that I found impressive.  We are extremely thankful for our chance to visit and learn about their program.

This has offered us HOPE.  My little girl deserves a good life and transplantation will offer many options for a better quality of life, whenever that time may be.  I am grateful for this wonderful opportunity for Maci and my family, regardless of the final outcome.

 

On a side note, I want to mention how very thankful I am for Maci having an amazing father who is also a wonderful husband.  He has ALWAYS been active, hands on and supportive in every day life with Maci and in all decisions made regarding our amazing kiddo.  It's a blessing to not be alone in the day to day activities and the decision making.    
I am about to begin my 6th week of nursing school which is like no other school or college curriculum that I have ever experienced.  I have had to spend more hours with my head in books than I thought imaginable and that's just to "get by".  Rick has really stepped up and taken up the slack at home and with Maci.  As they referred to it one day at school during a presentation, I do experience "Mommy guilt" (as well as wife guilt) and keep reminding myself that this is TEMPORARY.  I am thankful that this is a time in Maci's life that she will not remember and she will not recall the time I spend away from her or studying.  I am glad that I can take full advantage of this chance to continue my education, pursue a degree and have a career in something that I truly believe in my heart that I was meant for.  Had it not been for Maci, I would likely not have attempted to return to school.  If it weren't for the support of my husband, I couldn't do this.  

and I am grateful!