Q & A

Since I had a moment, I thought I would field some questions.  Without making this a 100 mile long status on Facebook, I decided to blog for the first time in months. 
 

Is Maci back on the list for a transplant?
Yes, Maci is back on the list to receive a kidney.  No, she does not start at the bottom of the list again and work up.  Because her kidney failed within 90 days, she gets her time earned back, earning her spot "back in line", at the top. 

How long did Maci wait for a kidney?
Maci was on the list, as active, for 8 weeks, 2 days.  During that time there were 3 potential matches / offers for kidneys and they accepted the 4th. 
With Maci being a toddler, a kidney from a donor who is 6'5" and 250 lbs would be large.  It would not be a good size for her.  The transplant surgeons waited on a good size kidney for Maci before they accepted it for transplant. 

How long before she receives another kidney? 
FIRST, we have to get her over this RSV (respiratory virus).  Once transplanted, you take immune suppressing medications which will not allow you to fight off an illness.  If she is already sick, then adding immunosuppressive meds would not be a good mix.  She must be germ free.  :)

What happened to the donor kidney?  Was this preventable? 
Maci's donor kidney was placed in her abdomen; that's where transplanted kidneys go.  In adults, it is more to the side but still in the area of the abdomen.  It is not "connected" to anything but blood vessels, so it can and will move.  Usually, this would not be a problem for the kidney to move.  Maci's had rotated 90 degrees....they have seen them completely turned (180 degrees) and cause no problem.  When Maci's kidney rotated, it twisted the blood vessels.  Because of her RSV and running fever, she became dehydrated and it caused a blood clot (a pretty big, lengthy clot), nearly completely cutting off blood flow to the kidney.  During surgery yesterday, they removed the clot but were not able to return good blood flow to the kidney, so it was removed.
A blessing.....that the clot stayed put.  Even though it compromised her new kidney, it didn't move to her lungs, heart or brain.  If the clot had moved to another area, it could have been severely damaging and potentially fatal.  It could have caused a heart attack, a stroke or a pulmonary embolism in the lungs.  Despite this being a horrible thing that happened, Maci remains a very blessed little girl!
This was NOT something foreseeable and it was NOT something that could have been prevented and it is NOT something to be blamed on any of the doctors.      

Why was the kidney removed and not left until the next transplant? 
The donor kidney is a "foreign body", which is why Maci had to take anti-rejection meds.  For instance, when you get a splinter in your finger, your body will slowly push it out, to the surface, because your immune system begins telling your body that the splinter does not belong.  The same thing happens with a transplanted organ.  Your body will fight against that organ unless the meds are taken to fool the body into thinking it belongs there.  Continuing on the anti-rejection meds could also over time decrease the ability for a future kidney match (an antibody thing).  I understand it but am not sure that I could properly convey with an explanation here.  LOL

What's the immediate plan?
The plan for now is to get Maci better.  She had a vascular catheter placed today so if dialysis is needed, she can have CRRT (Continuous Renal Replacement Therapy).  This is a way to get rid of the wastes but different than hemodialysis.  She is still too small for hemodialysis (where a machine pulls blood out of the body, cleans it and returns it).  If you would like to know more about CRRT, here is a link:  http://www.baxter.com/healthcare_professionals/therapies/renal/acute_kidney_treatment/continuous_renal_replacement_therapy.html
The doctors plan on reinserting a PD catheter like the one Maci had before in about a week, for us to return to Peritoneal Dialysis, the type of dialysis we do at home.  They want her belly to rest and heal from the surgery yesterday before they add something to her belly.  It is not a guarantee that she can resume PD because there can be complications from previous surgeries of opening the belly, having had a prior catheter, etc.  I remain hopeful!  We would resume dialysis and await a new kidney.

How long will Maci be in ICU?
I am not sure.  We were originally told a few days and after, would return to the 12th floor.  At this time, we haven't been told anything definite. 

How long will Maci be on the breathing machine?
They have already began the process of taking her off the ventilator.  They would like to have her come off tonight and are currently working on that as I type. 

Will the same surgeon who did her last transplant do her next one?
Whoever the surgeon is on service or on call for the day/night of the next transplant will be who performs the surgery.  It could be the same surgeon or a different one.  The surgeons who removed the donor kidney yesterday were different than the surgeon who transplanted the kidney.  As frustrated as I was with the initial process of getting Maci transplanted, I have been extremely pleased with the surgeons post transplant.  The one's that I have met or interacted with (4 of the 7 total) have been WONDERFUL!  The 2 fellows (those doctors "doing their extra time" to be a transplant surgeon)have been great as well! 

Are Rick and I ok?
Yes, over all, yes.  This has all been difficult.  We LOVED the 20 days of being dialysis free and the thoughts of being able to get back to a little bit normal night life for ourselves and Maci.  It was great to have her sitting in my lap at 10 pm listening to Pandora on the TV....because we could!  This is a TEMPORARY set back.  It is not permanent.  The majority of the upset and anger has passed and we are ready to get this next party started.  :)
Beginning this evening, we will be back at the FedEx Family House for 7 nights.  We will be able to have some decent, non chair, non couch sleep. 

We are oh so very thankful for all of your support and prayers.  THANK YOU!  Keep 'em comin.  Maci still has a tough row to hoe. 

My sweet girl resting. 

Her night nurse washed her hair and gave her pigtails last night.  :)