Friday, November 14, 2008

01.30.2008 - Progress

From Julian's COTA Journal.
We returned last night from our trip to Palo Alto, CA safe and sound. We had a great time meeting with the transplant team at the Children's Hospital at Stanford, as well as doing some touristy things in San Francisco.
Below is an excerpt from an email that Stacy sent out last night offering a synopsis of the results of our trip.
I just wanted to send a quick update to everyone in my e-mail address book. In a few days Julian will be listed on the Organ Recipient regional list for the Lucile Packard Children's Hospital in Palo Alto. He has been on the Denver Children's Hospital list for a kidney transplant since May of last year, which is almost 9 months, and his time accrued here in Denver will transfer with him to Palo Alto's list. Since children waiting for kidneys in Palo Alto don't typically have to wait even 1 year's time, it is likely Julian will be "up" for a kidney in the next few weeks-to-months.
We do have a friend who is being tested as a potential living donor, which is what is preferred in terms of prolonging the life of the transplanted kidney, so we still have hope for that option. But if she is not a match, or if her blood reacts "positively" (which isn't good) with Julian's, then we will be reconciled to receiving a cadaveric kidney and will know that it is God's best for Julian.
What this means is that Julian and I (Stacy) will be moving in to the Ronald McDonald House at Stanford in a couple of weeks, to wait for his kidney. After his transplant we will need to remain there an additional 100 days for their follow-up protocol. Dave will remain in Colorado, and come see us on weekends when he can. When the transplant occurs, he will take 2 weeks off to come be with us, but then will need to get back to work. Please pray that we weather the separation from him well!
The reason we are transferring his name to the Palo Alto list is that Stanford does a "Steroid-Free Transplant Protocol" which would keep Julian from having to be on Steroids for the rest of his life as part of his anti-rejection immune suppressant medication regimen. Denver uses Steroids. We will continue to be listed on Denver's list, but only as a back-up in case he is disqualified from Palo Alto for some reason.
Thank you all for continuing to lift our family up in prayer, and if any of you would like to donate a tax-deductible donation on behalf of the expenses associated with Julian's transplant, you can do so at or go to the Children's Organ Transplant Association website and find Julian P.'s name on the drop-down list. You can donate right from your computer if you like.
Thanks again!
Stacy Phillips
Then, as if that weren't enough, this morning, we checked Julian in for surgery at Denver Children's Hospital to have his peritoneal dialysis catheter removed. All went well, and when Julian revived from anesthetic, the first words out of his mouth were "get down, run around."
An interesting note: when we returned to Children's to resume dialysis training in early January, we prayed that if for any reason, dialysis was not the correct track to pursue for Julian, that He would make it physically impossible for the dialysis to work. On the day we returned and hooked him up to the machine, for reasons unknown, the dialysis physically would not work. Not long after, we decided to suspend training until we could determine whether or not Julian really needed the dialysis at all (determined through his blood work). Today, after the surgery, the surgeon came to let us know just how Julian was doing. When we asked him what happened to the catheter, he explained that it was completely clogged with what he described as an unidentifiable substance: it was the consistency of fibrin but the wrong color; it was the color of the fatty omentum, but the wrong consistency. After all his experience in surgery, he was unable to explain what the substance was.
That's all for tonight - thanks for checking in.