From Julian's COTA journal.
Julian is recovering well. He's still in the PICU, still on a ventilator, and although he spends most of his time asleep, he wakes up from time to time. Fortunately, the cocktail of pain meds and sedatives keep him pretty comfortable, so he spends most of his awake time with eyes half open, moving in slow motion, staring at his hands. Probably wondering why he has so much stuff stuck to his hands and face.
He's doing really well. The docs have been by on rounds, and Dr. Concepceon stopped in earlier as well. They're all very pleased with Julian's condition. I watch them as they talk at the nurses station, and can tell by their collective demeanor that they're serious when they use words like "awesome" and "beautiful" and "excellent." He's producing a lot of urine (!) and the kidney has already gone to work regulating his blood chemistry, teh results of which are born out in his labs: His creatinine, which had escalated above 5.0 in recent months, is down below 0.5 (0.3-0.6 is considered normal, if memory serves); And he's outputting so much potassium that they're actually having to supplement.
The human body is a miracle. We're grateful for the medical professionals here who executed the surgery, we're grateful to Cheryl, who gave up her own kidney so this could happen; And we're grateful to God in heaven, the Great Physician, who orchestrated the whole thing.
Stacy sent out an email last night, reflecting on the events of the day, and on how we got here in the first place. For those of you not on her mailing list, here she is.
The surgery was a success, thank you Lord!
Julian is now in the PICU to recover for 3-4 days, then he'll go to the regular floor/care unit. This whole day has been one miracle after another. The biggest one I will share with you now.
When we heard about the "Steroid-Free Transplant Protocol" at the Lucile Packard Children's Hospital last December, we were very excited to have Julian evaluated there. Julian had been on the transplant list in Denver for 7 months, and we were told it could be another 1-2 years before he would get a kidney there. In addition to the wait time, Denver's transplant coordinator had put off every live donor prospect we had sent her, not sending out requested information, not returning phone calls, telling one that he may need his kidneys for one of his two children in case they ever developed kidney disease, even telling one of them that they would have preferred a cadaveric child kidney to a live adult kidney.
After some time I began to feel like with this new option of Stanford arising out of nowhere that God may be leading us elsewhere for his kidney. Stanford also said that with their region, children seldom wait a year for a kidney, and as Julian had already been on the list for 7 months, we felt that the timing was right even if we did not have a live donor.
Then came Cheryl. Cheryl had begun asking me last July about the possibility of her donating a kidney to Julian, and we began the process very slowly. Having contacted Denver several times to move the testing process along and being met with phone calls not returned, she was getting discouraged. When it came up again in April, and Julian and I were already in Palo Alto waiting to be listed with their cadaveric transplant list, Cheryl was gung-ho about being tested again. Stanford's Transplant Coordinator, although she was filling a position as a stop-gap while doing her other job in the unit (while they searched for a long-term full time replacement), was super-excited that Cheryl was interested in moving forward. We flew her out for the testing after the "big" blood test indicating compatibility, and we kept moving forward with each new test. Cheryl came out on April 30th, believing she was coming out for the last round of tests. It is now May 20th, and she lays recovering next door at Stanford Medical Center while my son Julian lays recovering in the Pediatric Intensive Care Unit here at the Lucile Packard Children's Hospital. Wow!
When we came back to Colorado in January after going through the first part of the transplant evaluation at Stanford, I was a little uneasy about doing the procedure here (at Stanford). From what I knew about the procedure from Denver, I knew that not every facility takes out the existing (native) kidney and ureters, as Stanford wanted to do. Denver kept them in, which I was more comfortable with just for back-up sake for one, but also for the fact that someday the medical technology may exist to heal or cure obstructive kidney disease, who knows? And if Julian didn't have any of his native kidneys left, then it wouldn't be an option for him. I know, far fetched idea, but in 20-30 years who knows what the medical technology will be?
Secondly, I was concerned because the Transplant Surgeon here told us they would be putting the kidney into his Peritoneal Sac. We knew from the information we had received from Denver that once the kidney goes into the sac, it has the potential of rendering that Peritoneum useless for any future peritoneal dialysis, should it ever be required when the first transplant fails on down the road. I was very uneasy about that.
So, enter "Leviticus". I love Leviticus. It seems like, when you read Leviticus, that it is repetitive. All this talk about methodology of the sacrifice. So many bowls, so many lamp stands., so many bulls. Such and so a way of preparing the burnt offering. Again and again. So many....kidneys? Wait. What was that? Let me read that again....
For a little history, I prescribe to the quiet time method of reading my Bible straight through. I start in Genesis, and read some. The next time I pick up my Bible, I read some more from right where I left off. And so on, until I've gone all the way through the Bible. Then I start over, sometimes with a different translation. When I finish, I start again. I've gone through the Bible about 8 times in the last 20 years with this method. I love it, and it's as though God speaks to my specific situation when I specifically need it.
Back to the kidneys. Just the time I was really struggling to be at peace with going to Stanford for the Steroid-Free Transplant Protocol, I "happened" to be reading through Leviticus. I "happened" upon 9 instances in one sitting where God is instructing the person to "remove one kidney, along with the other" of the bull in preparation for the offering. The first time I read that I thought "oh, coincidence." Then I read it again. Then again. The same wording again. As I said, NINE times in one sitting where God instructed the way the offering was to be prepared. As an offering.
I'm Irish, so it takes awhile for things to sink in. But nine times is enough. I surrendered my desires on His altar, and without understanding fully why, became at peace with going to Stanford even though they would be removing both kidneys and putting the kidney in the peritoneal sac.
"Do you trust Me?" I could hear God whispering (not audibly). "Do you trust Me enough to place your son's kidneys on my altar, knowing full well in advance that I will take them? Do you trust me enough with your son's future medical needs (the potential destruction of the peritoneal sac)?"
Yes, Lord, was my reply. I gritted my teeth, much like I envision Abraham having done when he placed his son Isaac on the altar. I raised the knife, and committed to the program and the process as it was presented to us. I signed the bottom line, so to speak, and knew that Stanford was where the Lord was leading us. Abraham held up his knife. My knife was my consent. "Do whatever you have to do. We'd love to spare his kidneys, but if it's medically necessary to take them out, and to put the new kidney in the peritoneum, do whatever your protocol requires and your judgment warrants" we told the surgeon.
Thursday May 15th rolls around. I get a call from the new permanent transplant coordinator for Stanford. The surgery will be on Tuesday. We are to be admitted on Monday. Praise God. Cheryl's a go. We are a go. "Oh", she says, "and by the way, Dr. Concepcion is only taking out the right kidney."
Stunned silence. "What?" I ask.
"Yes, he's only taking out the right kidney. He will leave the left one in place.”
I immediately called Dave. I explained to him that it was out of the blue that the transplant coordinator would tell that to me. I had sent an e-mail to the Dr. earlier in the week explaining that Julian's urine output had gone down, and he didn't seem polyuric anymore (a water-waster). I don't know if it had anything to do with it, but all of a sudden God was giving me back a kidney! It still works somewhat, so I considered it a gift!
Miracle #3 (#1 was Cheryl and #2 was that they were a match).
After the surgery, Dr. Concepcion comes out and gives us the update. "Oh and by the way, I didn't have to put it in the peritoneum" he says. "Julian had plenty of room where the other kidney came out, so we didn't even cut into the peritoneum."
Bang. Miracle #4. God provided the ram. We gave everything to Him and trusted Him with Julian's future, and his present. And He worked it out according to His purpose.
I often look back on the story of Abraham and Isaac. As a Bible School teacher of mine used to say, when Abraham took Isaac up that mountain he was fully prepared to sacrifice him. But God had the answer, a ram, coming up the other side of the mountain the whole time. Abraham didn't know that, didn't see the ram making its way up the dusty trail on the other side. But there, at the moment it was needed, God provided the answer. I love it when God provides the answer in such a clear way. Then I love to google-map the terrain (figuratively speaking) and analyze the trail that the Ram came up on the other side. "Oh, right! Ooooh, that was a tricky patch! Oh, THAT's why that happened! Oh, I see how that tricky bit set it up really nicely for this other part over here....wow!” Amazing!
I think it's interesting that God tears up the maps and provides entirely new ones constantly, though, so we can never get too comfortable with his answers or second guess what He is going to do next. [David's note: I think it's interesting that if God provides a specific map at all, it's usually handed to you after the fact, so you can look back and see where you've been, as opposed to looking forward to see where you're going.]
Cheryl and I saw Caspian at the theater on Friday. One of the things Aslan says to his Peter, Edmund, Susan and Lucy is "Nothing ever happens the same way twice". If I had an advance map for my life, knowing me I'd try to find shortcuts. God doesn't want shortcuts, he wants our trust. I could see no way around not giving up Julian's semi-working kidneys or ruining the peritoneum and still get the steroid free protocol other than by going through Stanford.
Earlier this spring, I was tempted to consider Seattle Children's Hospital, when I learned in February that they also do a steroid free protocol and they leave the kidneys in place, AND Julian's Urologist from Denver was there. But their wait list would be another 6-12 months, (not knowing yet if Cheryl was going to be the donor back then...) and I really feel like God led us to Stanford. Stanford pioneered the Steroid Free Protocol.
Also I felt that Julian was running short on time with his current "operating system" so to speak, and was in urgent need of an "update" and "reboot". As it was, he was on hemo-dialysis for about...let's see...40 days. Exactly 40 days. Hmmmm.
And God worked it all out anyway.
Please continue to pray for Cheryl and Julian as she heals, and as the Doctors strike a balance between anti-rejection and allowing the body to fight off any potential infections.