05.14.2010 - Wrapping The Day

From Julian's COTA journal

Julian went in for biopsy, and the Docs were unable do it: the organ was surrounded by liver and bowel, such that they were unable to get an unobstructed point of entry into the kidney. The Doc in charge "rolled him every which way" to try to line up a clean shot, but in the end decided it wasn't worth risking a punctured bowel to get a tissue sample. So they didn't even insert the needle.

If Julian's condtion were anything less than stellar, or if he were in rejection, they probably would have gone for it. But because he's doing so well, and because this is only a scheduled protocol biopsy, it's acceptable to skip it.

We're happy with the decision, because a) it's indicative of Julian's overall great condition, and b) the follow-up care on our end is a hardship on all parties involved. "No running or jumping for two weeks following the biopsy." Really? That's pretty much all he does right now.

So, now that Julian has recovered from anasthesia, our goal for the day is to get him fed and rehydrated. This weekend we'll take it easy. Monday we have a follow-up with the Docs to talk about where we go from here, followed by a fluoroscopic study on J's bladder to check for signs of reflux and overall bladder health. After that, the drive home.

Thanks to all of you who prayed for us. Julian did great today, recovered well from the ordeal, and we pray that he'll continue to do well for years to come.

David

05.14.2010 - Biopsy Today

From Julian's COTA journal

Hey all - Julian's 2-year post-transplant biopsy is today. We check him in to the day clinic at Lucile Packard Children's in about an hour and a half (8:30 a.m.). It's an all-day event, mainly because Julian has to lie still for eight hours (!) post-procedure (to give the blood clot resulting from the biopsy time to form).

Great day yesterday: Dr's appointments and an ultrasound, followed by dinner at the Ferry Building in San Francisco. A nice break.

Please pray all goes well today. I'll be posting updates to Twitter as the day progresses. Follow along at www.twitter.com/dphillips for updates.

Thanks.

David

05.13.2010 - Two-year Biopsy

From Julian's COTA journal

Long time, no post. We're back in Palo Alto for Julian's two year post-transplant biopsy. Julian is doing great, and we can hardly believe it's been so long already since the kidney transplant! God has been good indeed.

Checked in yesterday at the Ronald McDonald House. This morning, a marathon Dr's appointment, followed by an ultrasound this afternoon. Tomorrow, the biopsy itself. Then the weekend to recover. On Monday, follow-up clinics in the a.m., then a fluoroscpic study to check on the state of his bladder/kidney connection on Monday afternoon. After that, the long drive home.

It's been a good, albeit exhausting trip so far. Pray for a successful procedure, and safe travel home. Will post more as the weekend progresses.

David

06.02.2009 - Two Weeks Post-biopsy

From Julian's COTA journal

It's been two weeks since the biopsy, and Julian is doing great! In fact, today we can finally remove any behavioral restrictions, which is a relief, because it's darn near impossible to keep someone with this much energy from jumping up and down and running around. Julian has been a good sport though, so we rewarded him with a dip in the pool outside. We had a ball, as you can tall from the look on his face.

We also changed the NG tube today, which Julian was not very happy about. However, it does mean we were able to get a few pics of him sans tube, which is always nice.

It's remarkable how quickly he's growing. If you go back and look at pictures taken around the time of the transplant, he's really quite small. But Julian went from 25 lb. to 45 lb. in the span of 12 months. He's much taller as well. He used to be considerably smaller than other kids his own age; now he's as big or bigger. Fulfilling his genetic potential, as it were - I think that's how the docs in Palo Alto put it. Grow Julian Grow.

Check out the additional pics in the photo album. Have a good night, and thanks for checking in.

David

05.25.2009 - Happy Memorial Day

From Julian's COTA journal

Happy Memorial Day everyone!

Here's a little video we shot last week in Half Moon Bay, when we were in CA for Julian's biopsy.

05.24.2009 - Home Sweet Home

From Julian's COTA journal

We're home.

It's been a good, but long, trip, and it'll be good to sleep in our own beds again tonight. Julian is well, and you can read from previous posts that the biopsy results were good. We're thrilled that he's doing so well.

And not it's time for bed.

David

05.21.2009 - Good News

From Julian's COTA journal


We went to Half Moon Bay this a.m. to revisit some of our old stomping grounds. What a beautiful day. No actual beach time, but it was great to see the sights and listen to the waves. We found a picnic table at the marina where we ate our lunch, and Julian found a ladybug. We played with it for half an hour. It was still alive when we left.

Then we headed back to LPCH to review biopsy results with the docs. Good news: No rejection, no medicine toxicity. One concern they will study further has to do with what looked like some kind of reflux, but we're told a) it's really common with this kind of biopsy, and b) it's unlikely any actual reflux is taking place, due to Julian's unique urological physiology. So, they're not worried, but will look into it further.

Tomorrow, we head back to LA, where we'll spend a day with friends. Then Sunday, we'll drive back to Phoenix - home sweet home.

Thanks for tuning in.

David

05.20.2009 - And We're Back!

From Julian's COTA journal

Julian woke up this morning his sunny, singing self. Right now he's playing with his Thomas Train engines and his new Troublesome Trucks. He's been saving for them, but we decided to buy them for him yesterday for being such a good sport throughout the day. The hard part now is going to be keeping him from jumping and running around. For TWO weeks. Seriously.

One thing I didn't mention in yesterday's post had to do with the impression Julian seems to make on people. Repeatedly. When we showed up at the Day Hospital (the short-stay unit within the Children's Hospital), all 4 of the nurses on duty remember him from his previous visits (biopsies and infusions). The last time he saw any of them was in November. And when I had to go down to Admissions to pick up a new parking pass (bear in mind, Julian was NOT with me at this point), the woman asked "patient name?" I replied "Phillips." She asked "Julian?" When I confirmed, she went all ga-ga, asked how he was doing, asked for the update, etc.

I'm always struck by the impression Julian seems to make on other people. He's so personable - and so cute - people remember their encounters with him for months - years even. It's funny, because at the same time, I can tell that I've not made the same impression on the same people. And I wonder if God has something special in mind for our little man. In the mean time, we'll do our best to take care of him, and enjoy the time we have together.

David

05.19.2009 - Biopsy

From Julian's COTA journal

We reported to LPCH this morning at 7:30 for Julian's biopsy, which was to take place at 1:00 p.m. At 3:00 p.m. they finally took Julian into the O.R. for the procedure. Around 4:00, Dr. Alexander came out to confirm that the biopsy had run smoothly - no bleeding, no fistulas, no knicked bowel - just a clean tissue sample.

Julian had no problem coming out of anesthetic - unlike previous procedures, when it took hours (literally) for him to be able to breath normally on room air (i.e. without oxygen). What a relief!

We spent the rest of the day in the Day Hospital, where we watched Wall-E and Kung Fu Panda at least twice each, until we satisfied the doctors' orders that Julian lay still for 8 hours following the procedure. We left around 11:00.

We're back at the Donald House now. Julian is asleep. All is well with the world.

We'll get preliminary results back on Thursday afternoon. After that, we should be set to begin the journey home.

Thanks for tuning in. Please check back to see how we're doing.

David

05.18.2009 - Annual Check-Up

From Julian's COTA journal

Cheryl Humble, Julian’s kidney donor, arrived on Sunday morning for her annual check-up. We went for a walk around the mall across the road, where there happens to be a display of play-houses that have been designed, built and donated by local architects. The houses are being raffled off for charity, but until then, they’re on display. We had a great time walking around, exploring the mini-homes. After that, it was time for a nap and dinner. A good day.

This morning, we went for Julian’s pre-biopsy check-up, and Cheryl went for her annual. Julian and Cheryl are both doing very well. A couple tweaks to Julian’s med regimen, an adjustment to his daily fluid intake, and overall reduction in the number of times he has to go for labs. All routine. The docs are thrilled with his progress, and so are we.

Tomorrow, we check in for Julian’s biopsy at 8:00 a.m. Please pray that all goes well, as there are several real risks to this kind of procedure, including bleeding, blood clots, and general infection. We content ourselves in the knowledge that these doctors do this kind of thing all the time, and that God will be with them and Julian in the operating room.

Stacy drove Cheryl to the airport this afternoon. We should get preliminary results back on Thursday, and if all goes to plan, we could be headed home as early as Friday morning.

Stay tuned.

05.15.2009 - Urology

From Julian's COTA journal

Julian had an ultrasound this a.m., followed by an appointment with Dr. Kennedy, his Urologist. Our concerns for Julian re: all things urological were that if we were to proceed with surgical intervention to restore "normal" urological function, that it may in fact have a negative impact on the new kidney. We learned today that we're in no hurry to make any changes physiologically, that the only real impetus to pursue anything further would have to do with Julian's social consciousness connected to his own continence. I.e. he'll have to wear some manner of diaper from now until whenever we collectively decide to pursue some other course; now we know that we can wait for him to tell us when we should start looking seriously at that option.

Does that make any sense???

Anyway, Dr. Kennedy relayed something once told to him by one of his profs. "No one dies from incontinence; however, people do die from the stupid things doctors do to them unnecessarily." Enough said.

On Sunday, Cheryl arrives for her one-year check up too, so we'll get to spend a couple days with her as well. That should be fun. As for us, we have the weekend off, so we're planning on relaxing and taking in some of our favorite haunts. Maybe even a trip into San Francisco. Things don't start up again for us until Monday morning.

Thanks for tuning in.

David

05.14.2009 - Return to RMH

From Julian's COTA journal

We arrived at Ronald McDonald House in Palo Alto at 5 p.m. today, got checked in and settled pretty quickly. It's been a long journey here, and even with the day at Disneyland yesterday (which although fun is hardly relaxing), we are glad to be here.

We've already bumped into some familiar faces, from the folks here at RMH, to some of the shop keepers at the mall across the road, and even one of Julian's nurses from last year, who happened by while we were out for a walk. It was good to catch up. Palo Alto really feels like home away from home.

Our first stop tomorrow is Radiology at 10 a.m. for an ultrasound. Then at noon, we meet with Dr. Kennedy to talk about the future of Julian's bladder and urinary track. Next week, we meet with the kidney Docs, and on Tuesday, Julian goes under for the biopsy.

Stay tuned - we'll try to keep things up to date.

David

05.12.2009 - Good News

From Julian's COTA journal

We're on the road, on our way to Palo Alto for Julian's biopsy. We're spending tonight and tomorrow in LA at our friends' place.

We just heard from Ronald McDonald House in Palo Alto this afternoon - we've been accepted! That's a huge relief, as it's significantly less expensive than a low-budget hotel where we'd end up otherwise. There's also something comforting about our familiarity with the place. It feels like home away from home. We'll check in on Thursday afternoon.

First appointments are on Friday.

Right now it's time for bed.

Stay tuned.

12.04.2008 - Biopsy Reprieve

From Julian's COTA journal

First thing this a.m. we flew from Phoenix to San Jose, and drove up to Palo Alto. We had a 2:00 clinic visit with the nephrology docs at Lucile Packard Children's, which was to be followed tomorrow by Julian's 6-month kidney biopsy. However, when the docs received the final lab results from last week's pre-biopsy labs, they discovered a bacterial colonization in his bladder. This is nothing new, as bacterial colonization is common for kids with vasecostomies. However, the colonization they discovered was of an unusually high concentration, and was accompanied by a white blood cell count that was outside the acceptable range (too high). As such, they're treating it as a urinary tract infection, and have prescribed an antibiotic to fight the colonization. They've also cancelled the biopsy. The consensus at this point is that the potential information they may garner from the biopsy is not worth the risk of putting Julian under and needling the kidney if there's even a possibility of infection from the bladder that could track up the ureter and infect the new organ.

For our part, we're in full agreement. Julian is doing so well - his blood chemistry is very nearly perfect - that they don't think they would have made any major changes to his medication regimen anyway. So, we're thankful to be off the hook.

Julian is going to have an ultrasound tomorrow morning in lieu of the biopsy, and in six months, we'll try for the 12 month biopsy. In the mean time, we're thankful that he doesn't have to be subjected to a minor surgery, and hopeful that the bladder infection will subside with treatment. Please pray with us to that end.

So, we'll enjoy our time here in the Bay area, and fly home on Sunday.

David

12.01.2008 - Biopsy Update

From Julian's COTA journal

I (David) am sitting at the coffee shop in Gilbert, AZ, while Julian takes his nap. It's been a great Thanksgiving holiday weekend. I'm flying back to Colorado this evening. Then, on Wednesday night, I'm flying back here, so the three of us can fly to San Jose on Thursday morning for Julian's +/-6-month clinic visit. On Friday, he'll have his 6-month biopsy. Not looking forward to that, but hopefully things will go a little smoother than last time. The fact that his tonsils are out should help. Saturday we'll spend relaxing in Palo Alto, then Sunday I'll accompany Stacy and Julian back to Phoenix before hopping another flight back to Denver that evening.

After all that, we can get back to "normal."

We've also been working on the newsletter, which we hope to get in the mail sometime in the next week or two. Included in this year's distribution is everyone who has contributed monetarily to Julian's support through COTA. It's humbling to see all the names on the list (provided by COTA), and all we can do is say Thanks! Whether you've supported us through prayer or by contributing to Julian's fund, we couldn't have done it without you.

Stay tuned toward the end of the week for biopsy updates.