A Miracle Boy's High Risk Transplant

Today we met with the Transplant Team to discuss Evan's upcoming kidney transplant. Our Transplant Surgeon, was ironically in the OR transplanting a kidney when we first arrived. We spoke with the Coordinators, the Social Worker, The Nephrology Fellow and the Attending Neprhologist; the usual suspects. We knew coming in of certain obstacles and spoke superficially of the risks, the plans and the timeline. This was the conversation we've grown accustomed to and we were ready to leave, positively anxious to finally go through with our plan.

Cue the Surgeon, a little winded with sweat on his brow; clearly he had hustled over to see us. He walked into the room with a bright smile, told Evan he was the cutest little boy he's ever seen and he took the time to exchange pleasantries with us; a rarity in Surgeon to Patient communication. We could see he felt for us as soon as he started to speak of Evan's situation.

Unabridged, somewhat toned down, medical version [in brackets]:

[We learned that Evan's heart is actually backwards. In a "normally" positioned heart the aorta comes up and horseshoes over the heart falling to the left side of the body. In Evan's case it falls over to the right side of the body. Normally the aorta will come all the way down the middle of the trunk and split at the base into two vessels, one for each leg. Evan's, because of the "backwards" heart, splits higher up. Normally, a kidney would be hooked up lower in the body near the bladder. Evan's transplanted kidney would have to be hooked up higher because of the location of the split in the vessel. Luckily, or not depending on one's perspective, Evan doesn't have a bladder so the kidney being higher won't cause problems in regards to the kidney to bladder hookup.

Not having a bladder brings all whole new set of complications though. Where will his urine drain? For now they'll just move the ureter to the skin and the urine will drain into a bag or a diaper. Two complications stem from this: (1) bacteria loves a moist, warm environment and infection is a very real threat. (2) the body has a tendency to close holes as part of the normal healing process. Normally they like to use a piece of the colon to exit the skin so it's harder for the body to close over the larger opening. We don't have that luxury and have to hope Evan's body doesn't clot off the tiny opening the ureter provides.

Let's go back to the kidney needing to sit higher up. In most cases the kidney can be tucked underneath the liver. In Evan's case the liver must be moved out of the way; either pushed up, rolled over or flat out held in a Surgeon's hands. Surely not an ideal situation; no one wants to touch the liver if they don't have to and major consequences can come of this. A Liver Transplant Surgeon will be consulted beforehand and will be present in the OR for Evan's surgery.

Evan's vessels are tiny, he's a small guy, and his abdomen will just barely fit mom's (my) kidney. The Surgeon spoke of the need for having spare cadaver vessels at the ready in case he needs to make Evan's vessels longer, like an extension cord. If none are available they may need to explore artificial vessel construction, but Evan has a history of clotting anything artificial so that would be a worst case scenario. The addition of a cadaver vessel adds more complications; a chance of infection and finding one compatible that won't interfere with the ABO incompatible transplant. Still following?

I spoke of the ABO incompatible transplant in an earlier post; another added level of complication. Since our blood types don't match, putting in a random donor's blood vessel has added complications of rejection, or kidney rejection, in addtion to normal clotting risks In the same vein, some pun intended, if Evan needs multiple blood transfusions, which he likely will, they'll need to be careful to find the least reactive blood to prevent rejection. If he needs plasma the same applies. The plasma they'll have ready for him will be AB. The blood A.

If you're still with me I think I've covered all complications, well most. Evan's a blood type A; I am blood type AB. Evan's unique anatomy presents rare circumstances never seen by this team before. Evan's liver will have to be mobilized (moved). Evan's history proves that he is a bleeder and a clotter so they must be ready for either response.]

We were told that Evan's upcoming transplant is extremely high risk. This Surgeon, who is one of the best in the field, has never had a case as perplex at this. The Surgeon said it's flat out scary. He's apprehensive, but believes there's no other alternative. "He's two infections away from not having a way to dialyse (sustain) him," were his exact words. He also believes that this is our only shot as far as transplanting a kidney goes. All or nothing, do or die, all our eggs in one basket; these aren't cliches one wants to hear when it comes to their child's life.

Due to the extreme nature of Evan's surgery we have the best of the best in place. We've been told that when Evan goes in for his procedure the entire hospital will be on alert: the OR, Urology, the Liver Transplant Team, Hematology, Blood Group Incompatible team, the blood bank, the PICU... All needed resources will be available to him. They've covered all bases and aligned their best tools and minds. We really couldn't ask for more. If we only have one shot, this will certainly be the epitome of the good old college try.

We're certainly faced with the brutal realization that we need another miracle for our boy to survive. It's devastating, but not something we haven't dealt with before. Deep down there's a calm; I know everything will be fine. I felt the same when I was pregnant and they told me not even a miracle could save my child: here we are two and a half years later. We need a miracle. We need our prayer warriors again. We need you to tell anyone you know who can pray for our boy to do so. We need love and light around the world pulling for him. We can do this. He can do this.

We have to meet with the Liver Transplant Surgeon for a consult. Afterward, we'll meet one last time with the team and cross match our blood. Then the surgery will be scheduled. It's looking like this will all happen in January. Until then we'll pray diligently; work with Eastern Medicine via a Qi Gong Master; love and snuggle the heck out of our boy; and enjoy our time together in this calm before the storm. We will be positive. We will be productive. It's the best we can do. We owe it to our boy to give him the best of us when we're asking for so much more of him.