Monday, January 19, 2009

05.25.2008 - Recovery Cont'd

From Julian's COTA journal.

Hello all!

Just a quick one to let you know that Julian got significantly "disconnected" today, which means that he had many of his IV lines discontinued. He actually kicked one out (we believe in protest) off the top of his foot. We think it was part of his plot to "get down, run around". His only IV lines now are his HemoDialysis port, which has an arterial and venous line, both of them being utilized.

He ate part of a "sunbutter and jelly" sandwich today, and they are beginning to up his feeds through his Nasal-Gastral tube which, as Dave explained on the blog, they had to re-insert last night. Julian keeps saying he "swallowed" his "catheter". Technically, this is correct.

Julian is back to being lucid and sunny, and is a joy for the nurses to be around. I, on the other hand, was not such a joy this afternoon when I began to focus on the small picture and worry about the micro-managing of Julian's care. Dave sent me packing to the Ronald McDonald house for a hot bubble bath and a nap. It did wonders for me.

We believe Dave will be going back to Denver tomorrow for the work-week, and back here on Thursday night. That is, unless something major happens tomorrow with Julian, which we don't anticipate. The Doctors are so pleased with how it is going, they call his case boring. The head Doctor, Dr. Alexander, is waiting for whatever Julian has up his sleeve, as is the case with most transplant patients, that something will end up presenting itself is "the issue" that needs to be tackled.

Our prayer is that nothing ever materializes that would make Julian's case anything other than "boring" and successful! =)

We have been so pleased with his care, and thank the Doctors and Nurses that have been involved in the process. Even his nurse from Colorado, Silvia, called me to see how he was doing and let me know she was thinking about him! (Thanks Sil! Got your message!)

We will be headed back to Colorado whenever Palo Alto releases us into the care of Julian's Pediatrician, Dr. Beesley, up in Estes Park, and there we will stay for awhile while we get Julian's meds and protocol completely stabilized. Beyond that? Who knows?! We just take it one day, one week, one month at a time. All we need to know is the "next step".

Thank you all, I'll keep updating you.


05.24.2008 - Sunshine Returns

From Julian's COTA journal.

Julian is by no means out of the woods, but today was a big day in terms of recovery. Very lucid, talking - sun shining, so to speak. And on top of that, the lung issue seems to be resolving - less coughing - and we've been able to cut way back on his pain meds. Good signs.

The Docs are still happy with his progress, and if they're happy, we're happy. At least tonight he's sleeping soundly.

Well, he was, until we determined that his feeding tube (which is fed through the nose) was blocked while he slept. That was around 11 pm. As we're standing around figuring this out, Julian started talking in his sleep - talked himself right awake. It was very cute, except that when he realized we (two nurses, one doctor and me) were all standing around watching him, he panicked, actually stood up in his bed, leaning on me for support.

Once he calmed down, he was fine, but wide awake. So we decided to get his vitals, weigh him, change his bedding - and remove & replace the feeding tube. Everything was fine until we got to the last step.

The good news is it only took us three attempts.

And now at last he's sound asleep. First time for him (or me) since the surgery.

05.23.2008 - Recovery Cont'd Cont'd

From Julian's COTA journal.

Stacy here...

Resting not-so-comfortably is how I would describe Julian right now. Cheryl wheeled herself over from the adult-side to see him, and that was special. To those of you who have sent flowers to Cheryl, thank you. They brighten her room.

It looks as though Cheryl may be discharged tomorrow, with a follow-up appointment in one week and two weeks, respectively. She is still in considerable pain, but semi-ambulatory. We can't even begin to express the depth of our gratitude for what this lady has done for our son and for us. Thank you, Cheryl.

To any of you who have donated to Julian's fund, I am just starting to get my thank-you notes out, but I wanted to thank you right here, right now, also. It is a resource we can use to offset some of the expenses we've incurred here in California. For any who wish to donate, you may click on and click "donate". Much thanks, and it is tax-deductible.

Julian is battling pain right now, as he heals from his transplant. We are praying the pain becomes less as time goes by, and that he is more comfortable than he is right now, very very soon. Dave and I are doing trade-offs, with Dave on the night shift and me on the mid-day shift with a few breaks from him here and there. It has been so wonderful to have Dave here, and we are struggling with whether or not Julian's state of being will allow Dave to go back to Colorado on Monday night or not. We'll put off that decision until Monday.

Julian has some congestion right now in his lungs, which he is afraid to cough up because it hurts too much. Hopefully in the next day or two he will feel more confident that coughing won't hurt as much.

Meanwhile the kidney is doing well as far as we can tell. They did an ultrasound today and we don't have the results back of that yet, but we'll let you know.

That's it for now.....


05.22.2008 - Recovery Cont'd

From Julian's COTA journal.

8 p.m.

Julian was taken off his ventilator last night around 6 pm and is now on O2 support breathing on his own.

Today he's been mainly drifting between sleep and pain as the docs try to wean him off of his pain meds. Too much pain medication drops the blood pressure, and one of their goals at this point is to raise his b.p. in order to keep the new kidney fully profused and steadily producing urine. Julian still has some mucus in his upper airways, and has to cough in order to clear it. Coughing causes the abdomen to contract, and this, as you may imagine, is pretty painful. We just upped his pain meds, so hopefully he can sleep.

Cheryl's sister Crystal flew in from Portland, OR this morning to spend some time with her. Cheryl is in the same kind of pain Julian is in - coughing, abdominal pain, the whole thing. They're having a good visit. Crystal flies out tomorrow morning.

**Stacy here, Dave is at the Ronald McDonald House gathering some items in order to stay with Julian through the night here in the 3rd Floor West unit. They transferred us from the PICU around 8 pm, and the last three hours have been spent attempting to micromanage Julian's significant pain without regressing to previous levels of management. But we also want him to have some rest, so it's a fine line between too much sedation and keeping him reasonably comfortable. It's very difficult trying to explain to a child exactly why he has to go through this pain. There really aren't the words to make him understand those concepts quite yet. What to say? Mainly we have been trying to comfort him, telling him we are here, we are not going anywhere, and that we are sorry his is hurting. None of that seems to matter, though, when his whole body is convulsing with pain and those little earnest confused innocent eyes are pleading with us for some kind of physical relief from the pain. Then I start crying and it makes him even more scared. It's just hard. There is no easy way around it, it's just plain hard.**

11 p.m.

Julian is still in pain, coming it and out of sleep. He needs his rest, so I think we're going to try a respiratory therapy that involves vibrating the chest to loosen secretions, and suction to evacuate them. Doesn't sound like fun, and will probably result in some additional pain temporarily, but should result in a good night sleep with clear breathing.

05.21.2008 - Recovering from a Miracle

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!” 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.



From Julian's COTA journal.

5:50 p.m.

The surgeon just came out again to tell us that Julian is in the PICU and looking good. He'll be chemically sedated and on a ventilator for the next 24+ hours, in order to ensure the health of the new kidney. The kidney works and is producing urine as anticipated. They did a few other things which I'll go into later, but all in all it seems that the surgery was a success. We should be able to see him in 10-15 minutes.

Stacy went to pop in on Cheryl to see how she's progressing. Hopefully she's feeling better and able to rest. More on her later as well.

For now, it's time to pack up and get ready to go see Julian.

05.20.2008 - He's Out!

From Julian's COTA journal.

5:30 p.m.

The surgeon just came out and met with us. Surgery is over, and Julian is doing well. They're still wrapping up, but we should be with Julian within the next 30-60 minutes.

More later.


05.20.2008 - 45 Minutes

From Julian's COTA journal.

3:30 p.m.

The floor chaplain just dropped by, said she heard that the PICU has received their 45 minute notice, which means that Julian's surgery is almost finished. Much earlier than anticipated - about 4 hours rather than 8. Hopefully that's good news...

Okay, now we just spoke w/ the waiting room attendant, who has the phone numbers for all the operating rooms. She called and confirmed that yes, the kidney is in, but they haven't closed yet, as they're still observing function. She assured us, though, that everything is going well. They should be closing soon (we hope), and then we'll get the call that he's in the PICU. Probably another hour or more.

05.20.2008 - Cheryl in Recovery

From Julian's COTA journal.

2:30 p.m.

Stacy just came back from seeing Cheryl. The surgeon told us before Julian went in that Chery's surgery was a success. However, now that she's out of recovery, she's in a lot of pain. Apparently, she's very nauseous. Please pray that she weathers the pain and nausea well, and is able to get some rest as she recovers.


05.20.2008 - Waiting

From Julian's COTA journal.

1 p.m.

We received word that they were ready for Julian around 10:30 this morning. His final meds were ordered stat; on arrival, we bundled him into a wagon and wheeled him down to pre-op. More waiting as everyone involved came to check in with us: surgeons, nurses, anesthetic techs, etc. Once everyone was satisfied and the room was ready, we gave him his dose of Versed (pronounced ver-sed' aka "happy juice") and they wheeled him off to the operating room.

It was very hard to say goodbye this time, even though today is the day we've been anticipating since he was born. We've always known he'd need a transplant, and feel strongly that God has led us to Stanford for the surgery. Still, he's our little boy, and it's hard to subject him to what we know is going to be a difficult surgery and recovery.

They'll page us in the PICU waiting room around 8 p.m. tonight, and (we think) take us back to see him. It's unclear yet whether or not he'll still be on a ventilator at that time - it'll depend mostly on how he does with anesthetic during the surgery. If he is on a ventilator, he'll be sedated (i.e. "out") for as long as he's on it. Once they can extubate him, they'll bring him back.

So now we're just waiting. We've set up camp in the PICU waiting area, and at least one of us will be here until our pager buzzes later tonight. We'll post more later, as the day wears on.


05.20.2008 - Today's the Day

From Julian's COTA journal.

3 a.m.

It's been an eventful night so far. Nurses have been in several times, taking vitals, drawing blood and urine (which involves a catheter through the vasecostomy), and 4 saline rectal flushes, followed by a liquid glycerin enema. Finally, they've left us to sleep for a few hours.

Well, at least Julian is asleep. Hopefully Stacy is getting some rest as well. She's over at Ronald MacDonald for tonight, getting some well-earned and (hopefully) unbroken rest.

The nurses will be back at 6 to give him his antibacterial sponge-bath, and they're going to want to give him another rectal flush at some point. Got to make sure that gut is empty before he goes under.

Anyway, he's sleeping now, and I just sent out a broadcast email, reminding everyone that today's the day. Cheryl goes in around 8 a.m. Julian will follow around noon, and be under for approx. 8 hours.

Keep us in mind as you go about your day, and lift Julian up in prayer as he comes to mind. If you know people who may be interested in our story, please spread the word.