Monday, February 02, 2009

08.06.2008 - Taste of Freedom

From Julian's COTA journal.

This past weekend, we had to change Julian's NG feeding tube. He doesn't like us to mess with it, as it's pretty uncomfortable to remove the old tube, and even less fun to put the new one in. However, his feed schedule is such that from 10 until 1 every day, all feeds are turned off (except for what he eats by mouth). So, on Friday, we removed his old tube at 10:01, and didn't put the new one in until 1:00. It was wonderful to have him completely free of encumbrances, even if only for a few hours.

Here are some photos we took to commemorate the occasion.


07.27.2008 - Boy's Weekend

From Julian's COTA journal.

Julian and I had a great weekend this week, and it was just the two of us. Stacy left early Friday morning (I arrived Thursday night) for Carlsbad, CA, where she was to meet her family for her dad's wedding. I haven't heard all the details yet, but I understand it was a pleasant family affair.

Meanwhile, Julian & I had a boy's weekend.

Our day usually starts with a mid-morning excursion to La Baguette, the bakery at the shopping center across from the Donald House (that's what Julian calls the Ronald MacDonld House), where we get an 8-grain sandwich each (ham & cheese on an 8-grain baguette), I have my latte and Julian has his o.j. Julian likes to dissect his sandwich and eat the components separately - hence the photo with the slice of cheese. We hang out there until we've plowed through the food, then it's back to the Donald House to regroup. On Friday, it was time for a nap; on Saturday, we drove over to Half Moon Bay to see the wabes (waves) and surfers. Not a whole lot of action on the beach, and very windy, so we got back in the van and headed up the coast toward Pacifica. Then down the 280 back to Palo Alto and the Donald House. Regroup one more time, then back across the street to the California Pizza Kitchen ASAP, where we have (you guessed it) pizza. Pizza is so much more fun for Julian now that we don't have to peel the cheese off! Then a little walk around the neighborhood before returning to the Donald House for the evening routine.

It really helped me appreciate what Stacy does on pretty much a full time basis, not necessarily because of what I had to do, but because of what I didn't have to do that Stacy has to deal with all the time: labs, clinic appointments, dealing with Medicare and Blue Cross. She's pretty much full time. I basically had to manage meds, basic nouishment and sleep schedules for both of us. Compared to what Stacy has to deal with on top of all that, my job this weekend was a snap.

Of course it helps that we have possibly the most pleasantly disposed little person as the recipient of all this attention.

Stacy returned this morning with a bit of a frog in her throat, and we're hoping it's just from driving with the top down all weekend in that beautiful, clean air they have down there in the L.A. area. Also, she did some body surfing in Carlsbad, and inhaled a couple of waves, so that probably didn't help. No other symptoms at this point, so that's good news. Please pray that she remains healthy and makes a full recovery for this week.

Medically Julian is doing well - the docs are still happy. We don't know for sure yet when we'll be "released" from our stay here in Palo Alto, but we're hoping for sometime in early September. Julian has a 3-month ultrasound and biopsy coming toward the end of August. Once that's complete, the docs will review his long term care and we'll revisit our departure.

That's it for this week. Sorry for the two-week lull. Sometimes it just gets away from us. Thanks always for your prayers and support. Love to you all from the three of us.


07.13.2008 - Good Weekend

From Julian's COTA journal.

I'm back at San Jose Int'l Airport, waiting for my flight back to Denver. It's been a great weekend. Julian is doing well, and we were able to spend some quality family time together. I even took Julian to see Wall-E again this morning. He loves that movie.

We took the CalTrain from Palo Alto to San Francisco yesterday. We don't really do much on the San Francisco end besides go the the Safeway and Starbucks within walking distance of the station. Heading into town or up to Fisherman's Wharf would take more trolley and bus connections than we're willing to take on for now, and really the main point of the trip is the train ride. Julian loves it, and it's an hour in each direction. Someday, we'll manage to bring the camera with us so we can capture some video of Julian watching the world go by. Good fun.

Not much else to report at present - everyone is doing well, and we're finally at the point where we're beginning to ponder what life will be like once our time in Palo Alto comes to an end. It's a great feeling to actually be thinking about "after" having lived so much in the moment for so long.


07.10.2008 - Email to a COTA friend

From Julian's COTA journal.

Stacy wrote the following earlier this week to a family we met through the COTA website. They'll be arriving in Palo Alto shortly, and wanted to know about our experience so they could have some idea what to expect.


So far everything is going wonderfully well with Julian. No signs of that transplant cancer that sometimes sets in very early on...when I talked to Dr. Weintraub before the surgery, she told me that Stanford had not had one single case of that since starting their steroid free protocol. Neither had they seen any PTL as of yet, which is that neuroencephalepathy that seems to be associated with cellcept use.

I talked to Dr. Grimm after reading the recent FDA report on their preliminary findings regarding a review of Cellcept (it is an FDA approved drug), and Dr. Grimm said the risks of NOT having a transplant are far greater, ie the risks of long-term dialysis and the long-term prognosis of dialysis patients. I had to agree, and decided, once again, to place everything in the Lord's hands and go from there. It's a daily thing.

But taken in daily chunks, it is manageable. For example, 6 weeks after transplant we are down to once a week labs and once a week clinic. So, since today is not a lab/clinic day, all I have to worry about today is:

8:00 am -Change his formula bag to a special solution water bag
9 am-Give him 5 medications through his NG tube-prograf, cellcept, pepcid, valcyte, and aspirin
Prepare his 10 am-8pm formula, put it in a new bag
10 am Change his water bag back to formula.
Repeat at 8 pm, 9pm, 10pm

The rest of the day we can:

Have fun!!!
Drive to Half Moon Bay and walk on the beach.
Watch the surfers.
Get Julian a Chicken McNugget Happy Meal (they are free with the RMH key chain)


Walk across the street to the Stanford Shopping Center, where we can window shop and have Starbucks, and still get a Happy Meal because there's a McDonald's there, too! We can browse the following shops:
Ann Taylor
Pottery Barn Kids (Julian's Favorite)
Gap, Gap Kids, Baby Gap
Banana Republic
Tiffany and Co.
Williams and Sonoma
the Day Spa (oh how I'd love a massage!)
Eileen Fisher
and much much more!

I only tell you this because before the transplant it was hard for me to imagine what it would look like AFTER the transplant. It was stressful during the transplant and for about a month after, with him in the hospital for 2 weeks, then daily labs after that, turning to 2X week labs, turning to once a week labs.

My responsibilities during the day as regards Julian's transplant are to make sure his feeds and water are administered at the proper times, make sure his meds are administered, follow the Dr's orders as far as when they want labs, and check his blood pressure and temperature once a day. Now, if he gets a fever the docs want to know about it. He was warm one day last week (turned out to be a bit of heat exposure/exhaustion) so they wanted to do a bunch of bloodwork in the ER. That wasn't fun, but that has been our only "scare" since he was discharged a month ago. The docs watch all his levels, ALL his levels, and track them diligently. For example, Julian's white cell count decreased a little the first part of last week, and so they took note and tracked it. It didn't go down any further, so they left the Valcyte at the current dose and would like to keep that in place for another 6 weeks. Valcyte is a Chemo drug, and I'm not sure the purpose of it except possibly to keep any cancer-causing opportunistic cells at bay while his immunosuppression is particularly high.

The good news of all this is that there are oodles of doctors, the best in the world, and all their eyes and expertise are on my son. You can't ask for any better than that. You will be in good hands.


06.29.2008 - Update

From Julian's COTA journal.

Hello everyone. Julian is doing great!

We are down to twice--weekly clinics and twice-weekly labs. Doctor Alexander was asking us what our time frame was for going "home". I advised him that we would prefer to stay under Palo Altos watchful eye for up to a year. We don't know if that means we will stay here in the Ronald McDonald House, with Dave commuting, for that entire time, or if we will go 6 months from the date of transplant and re-evaluate whether we need to stay here for longer or not. Most of the things that can "happen" to a transplant recipient will be discovered in the first year, so it is important that he is very well monitored during this time. I feel a bit like Israel did in the desert, with God's cloud leading them by day and his pillar of fire leading them by night...right now I feel as though the cloud and the fire are here, and they aren't moving, so neither will we. We only want what is best for Julian, and right now that means we are here. Dave continues to live in and work in Colorado, with us seeing him on the weekends. So far it is working, although it is not an ideally "normal" situation. But then again, what is normal?

One super-cool thing happened as we were walking along the beach at Montara State Beach just north of Half Moon Bay, yesterday. Julian and Dave were sitting and watching the surfers and the waves, and I was combing the beach for sea-glass of various colors. I found a few little green ones, some white ones, and then my eye happened upon a very unusual one. It was blue, but that is not what made it unusual. It was the perfect shape of a kidney/kidney bean, and of a pretty decent size. It looked very much like the lapis lazuli "bean necklace" that Tiffany and Company sells in their jewelry stores. It was quite a find, as that lapiz lazuli "kidney bean" necklace is Julian's very favorite item in the store! At over $400 there was no way we could get it for him, that would have been pretty insane. But God provided, on the beach, in the sand, and I picked it up. Julian loves it. I told him God put it there for him. You see, Cheryl and I both have a little silver "kidney bean" necklace as a sort of memorial for God's provision of her kidney for Julian's Transplant. And now Julian has a little memorial stone as well, in addition to the very real memorial of an actual kidney inside his body! Ephesians 3:20 comes to mind, "Now glory be to God! By His mighty power at work within us, He is able to accomplish infinitely more than we would ever dare to ask or hope. May He be given glory in the church and in Christ Jesus forever and ever through endless ages. Amen."

Thank you for continuing to pray for us, and please keep Julian's little lungs in particular prayer this week as you think of it. The reports that Northern California has been blanketed by a haze of smoke from the 1,000+ individual wildfires burning in this state are definitely true. We have been affected here in Palo Alto for more than 3 days, with visible smokey haze and the smell of smoke in the background. Since Julian's lungs have very little "reserve" they are being impacted and irritated by the conditions, leading to an athsmatic-like cough and allergy-like symptoms. Yesterday we bought an air purifier from Costco to put in our little room here at the Ronald McDonald House in order to try to minimize his discomfort, as well as reduce any risk of the irritation leading to a more serious condition such as allergy-driven bronchitis, or worse. He is at high risk for pnuemonia anyway, so of course we are a bit worried. Please pray for him as we get through the next couple weeks and pray that they get these fires under control and contained.


06.22.2008 - Surfers & Wabes

From Julian's COTA journal.

I'm on the CalTrain headed south to San Jose as I write this, having spent a wonderful weekend with Stacy & Julian. They offer free Wi-Fi at the airport, so I'll see if I can post before takeoff this evening.

Julian is doing very well all round, although we did take him to the ER on Friday night. We had spent the day riding the train to San Francisco and back, and it was hot outside. On the way back from the train station, neither of us could be sure that Julian had any A/C on him, and he was pretty hot and sweaty by the time we returned to RMH. By 6 p.m., he had a temperature over 101 degrees F. He was fussy and irritable as well, so we feared there may be something wrong. Stacy called the docs, and they advised her to bring him in to the ER.

So off we went. Once there, the triage nurse did her thing, but when she took his temperature, she did it under the arm – and it was 98.6 deg F. Perfect. His head still felt hot though, so we took his temp again with our thermometer, the kind you put in the ear. Sure enough, still above 100. What's going on?

In the end, after conferring with Julian's nephrology docs, as well as the ER staff, we ended up getting discharged around 10 p.m., and the only thing we ever concluded was that it was likely that Julian had some form of heat exhaustion, and the hot head was the last of it working its way out of his system. By the time we returned home to RMH, he had stabilized, and slept soundly.

The rest of the weekend has been wonderful. The train ride to San Francisco was good fun, and yesterday and today we went back out to Pacifica and Half Moon Bay to watch the “wabes” (waves) and surfers. Even simply sitting in his stroller or walking along a calm beach sans wabes or surfers seems to be special to Julian – he always hates to leave. But we had fun all the same. It's so relaxing out next to the water.

We also found out this week that anyone with a RMH lanyard/keychain can get a free McDonald's Happy Meal on presentation of the lanyard. Subsequently, we discovered that Julian really likes Chicken McNuggets, as long as they're accompanied by BBQ sauce. Julian's assessment of the sauce was that it's sticky but good. Since then, we've referred to it as "sticky good sauce."

So now I'm on the train, headed back to SJC so I can fly back to Colorado. We're getting into a sort of routine, where Julian has come to expect that I'll always come back on Thursday (even though he's usually asleep by the time I show up). All this traveling is not for the faint of heart, but I can't imagine not seeing them for an extended period of time, especially during this turbulent season in our life.

Thanks to all of you for your prayer and support. It means more to us than you know.


06.19.2008 - Growing Boy

From Julian's COTA journal.

Well, I never really thought I'd hear the words I heard today from Julian's Nephrologist..."You can pare down his calories a bit...." For a boy who we had to fight to get 800 calories per day into, Julian is gaining weight a little TOO quickly! Now, granted, most of it is calories he is getting in his 20-out-of-24-hour continuous feeds through a nasal-gastric tube. But nevertheless, the boy has gained about 6 lbs since his transplant...and for someone who only weighed 25 lbs, 6 lbs is basically a 25% weight gain! He is beginning to ask for food outside of his formula feedings as well, which is good and normal. I didn't want to push him on eating "on his own" because I didn't want him to get a oral food aversion. Well, turns out he loves corn, he loves bananas, he loves cheerios with milk, he loves Trader Joe's Kettle Corn, he loves black kalamata olives, and he loves green olives. These are things he asks for on a regular basis. It is very common to walk past the olive bar at Andronico's (I go when it is the least busy, as the Doctor's don't really want us in crowded stores or restaurants)...and hear "I want an olip". He is unusual in that he likes very savory olives, blue cheese, soy sauce, marmite, etc. What a curious child! He's like his momma in that way.

Health-wise, the Doctors could not be more pleased about Julian's post-op recovery and are very happy with how well he is doing. His creatinine is holding steady at 0.4, down from 0.5 when the stint-removal-swelling was at it's peak. They are anticipating it will go back down to 0.3, which is where it was before they took the stint out almost 2 weeks ago. The fluid that had collected on his kidney is dissipating as well, as the swelling is reduced.

We have settled into the Ronald McDonald House and are blessed to be able to stay here for the long-term while the Doctor's at Stanford watch Julian's progress. It's likely we'll be here until at least October, as that will be the 5 month mark and the immune-suppressant IV's that he has to get twice a month will be over.

The other day his cheeks looked flushed, and I worried whether or not he had a fever or high blood pressure...only to realize that it was only normal little boy coloring, with red rosy cheeks. He has been anemic for so long, I was used to seeing him very pale. It was an "a-ha" and "Thank you Lord" moment.

Thanks for your continuing prayers as we continue to be led through this time.


06.15.2008 - Doing Well

From Julian's COTA journal.

I'm sitting at San Jose Int'l waiting for my flight back to Colorado. I just spent an extended stay w/ Stacy and Julian following his surgery last Monday. Julian is doing well - happy as ever, healthy and growing. We're thrilled with his progress, and the docs are in love with him (he has that effect on people). Cheryl just had her follow-up and she's doing well too. She flew home to Rhode Island yesterday morning.

We spent this afternoon at Half Moon Bay and Pacifica, watching the waves ("wabes" in Julian-speak) and surfers. Very exciting and peaceful at the same time. There's an undeniable serenity in the sound of the surf. We love the ocean, even if we can't go in it for the time being (doctor's orders).

The plane is here - time to fly away to Colorado. Until next time...


06.11.2008 - Recovering Well

From Julian's COTA journal.

Just a quick note to say thank you for your continued prayers. Julian is doing well, they are tweaking some things with his medication. They took out his super-pubic catheter and kidney stint, as well as his hemo-dialysis catheter on Monday. There was some residual swelling in the kidney leading to a bit of an obstruction but it appears to be subsiding. We are back at the Ronald McDonald House and are considering our options for the future. Most likely will be at the RMH for atleast another 2 1/2 months, then we're not sure what's going on.


06.05.2008 - Alert

From Julian's COTA journal.

I just got off the phone with Stacy a few minutes ago. She took Julian to the dialysis clinic this morning to change the dressing at the catheter entry site. When they lifted the sterile pad that protects the site, they found a blister. We don't know anything for sure at this point, but there's a possibility that it could be a staph infection. Obviously, with Julian's immune system suppressed by the anti-rejection meds, this could be a serious problem. The doctors don't seem too concerned at present, which is good. However, they've taken a culture to find out exactly what it is. In the mean time, they've put a topical treatment on the site, and will look at it again tomorrow.

Please pray with us that Julian doesn't have an infection.

Also, Monday is the day that Julian goes in for his (hopefully) final surgery, to remove the stint from his bladder, as well as the hemo-dialysis catheter. Please pray that all goes to plan then as well.

Thanks everyone.


06.04.2008 - Out!

From Julian's COTA journal.

Just a quick update to let you know we were discharged yesterday evening. Julian slept on the bed with me for his first night "out". We are working out the fear which seemed to take root in the hospital. May take a little time. In addition, the higher prograf (medicine) levels he is required to be on at present can cause pretty serious nighmares...thanks for your prayers.

Now we enter a few weeks of constant appointments, procedures, and medicines/dosage changes. As long as I can keep focused on what I have to do TODAY that verse in the Bible says "Don't worry about tomorrow, today has enough troubles of it's own...." true.

All in all, I am so grateful to be looking BACK at a successful transplant as opposed to looking forward to a future transplant. God has been gracious and merciful and good. I know it doesn't always turn out this way, and I am so thankful to Him that it did. Now we continue to pray for no rejection of the organ, etc. This kidney of his (Thanks again Cheryl!) could last upwards of 21-40 years! Only God knows.

If any of you have seen Prince Caspian, the latest Narnia movie, here are some lyrics from the Switchfoot song, some of which I can relate to for Julian:

This is Home by Switchfoot

I've got my memories
They're always
Inside of me
But I can't go back
Back to how it was
I believe now
I've seen too much
But I can't go back
Back to how it was
Created for a place
I've never known

This is home
Now I'm finally
Where I belong
Where I belong
Yeah, this is home
I've been searching
For a place of my own
Now I've found it
Maybe this is home
Yeah, this is home

Belief over misery
I've seen the enemy
And I won't go back
Back to how it was
And I got my heart
Set on
What happens next
I got my eyes wide
It's not over yet
We are miracles
And we're not alone

This is home
Now I'm finally
Where I belong
Where I belong
Yeah, this is home
I've been searching
For a place of my own
Now I've found it
Maybe this is home
Yeah, this is home

And now after all
My searching
After all my questions
I'm gonna call it home
I got a brand new mindset
I can finally see
The sunset
I'm gonna call it home

This is home
Now I'm finally
Where I belong
Where I belong
Yeah, this is home
I've been searching
For a place of my own
Now I've found it
Maybe this is home
Yeah, this is home

Now I know
Yeah, this is home

I've come too far
Now I won't go back
This is home


05.30.2008 - Upswing

From Julian's COTA journal.

Fever is gone, we asked the Docs if we could discontinue his mineralcorticoid (steroid) today, so he didn't get today's dose. It seems to have worked. He is back to his normal playful self, and I think that drug was the culprit.

Once the cultures all come back "clear" we will be able to be discharged! Then it's a regimen of daily labs (needle-sticks) and sometimes twice-daily labs for the first few weeks, in addition to daily clinic appointments. And he'll be on about 8 drugs to start, hopefully bringing that down to 2 or 3 for the long-term.

He's already gaining weight, and is playful and giggly and smiling.

Thanks again for your prayers and words of encouragement.


05.30.2008 - Still in Hospital

From Julian's COTA journal.

Technically Julian's fever has subsided, but he still feels warm to the touch in his extremities and head. We are waiting for the cultures to come back from the lab on everything they have drawn blood for, and meanwhile he is on antibiotics. He seems in a reasonably good mood, although with everything he's been through and then the trauma of the last few days he has become fearful of everyone who walks in the room. His "nap nap", which is his crib, has become his refuge and his torture chamber, and only when the rails are up is he fully at ease.

My thought is, that if everything comes up negative, it may be a reaction to the mineralcorticoid they put him on yesterday to keep his blood pressure up. One of the possible side effect of the drug is an "unexplained fever" and bloating/upset stomach, both of which he has at this point. I am going to press for them to discontinue that medication if all the cultures come back negative. The drug masks infection, so I don't want him being warm all the time and me becoming so used to that that I miss an actual infection down the road.

Please pray for our little guy, as the docs said shortly after transplant that the whole process can give them post traumatic stress disorder for a time.

Thank you for continuing to be a part of our lives by reading our updates and praying for us. They are saying that if his cultures come back negative he still may go home this weekend. (Home being the Ronald McDonald House for 3-4 month.)

Meanwhile Cheryl had her first follow-up appointment and is doing phenomenally well. I took her to the airport this morning to go to Denver to visit her friends in Denver and in Estes Park. Yay!



05.29.2008 - Fever

From Julian's COTA journal.

We were on schedule to be discharged tomorrow until Julian came down with a fever of 101.6 this evening. They will take blood cultures from both sides of his hemodialysis catheter (the venous and arterial sides) and begin a slurry of antibiotics tonight, including vancomyacin which is used to treat MRSA, a highly drug-resistant form of Staph Aureaus.

His blood pressure was unusually low last night, and coupled with the rising temperature today there is a concern. Please pray that any infection of the blood or of the catheter will be taken care of by the antibiotics and that Julian will come out fine from this whole ordeal.

I asked the Dr. on the floor tonight whether or not it was potentially life threatening by saying "It doesn't always go well for the patient in cases of blood infections, does it?" And she shook her head and said "not always".

Dave just walked in the door from his cab ride from the airport as I'm typing this emergency prayer request, and I am going to sleep at the Ronald McDonald House tonight while Dave sleeps here (or doesn't sleep) at the hospital.

I take Cheryl to the airport tomorrow to go to Denver for a couple weeks.

Thank you for joining us in prayer on this, we are worried of course.


05.29.2008 - Reflections

From Julian's COTA journal.

It's 12:15 am on Thursday, and I couldn't sleep so I thought I'd add an entry in Julian's COTA Journal. He had a fantastic night last night, day today, and is sleeping soundly as I type. His creatinine crept up to 0.4 today, which is a bit of a concern to the Docs as it was 0.2 within 24 hours of transplant. There are several reasons it could be a little higher, a few of which they explored today ie obstruction (they did an ultrasound with doppler and found no obstruction), a leak, which is unlikely because we did test the drainage fluid the other day before taking out the drain and it was negative for urine, and there are 5 other reasons, only 1 of which is a super-bad reason, and that would be acute rejection of the organ. We're praying it's not that. Please pray with us that it is only natural variations. 0.4 is still well within the 0.3-0.6 "normal" range, but they are playing it safe and retesting his creatinine on a regular basis to try to spot the trends and stay ahead of acute or chronic rejection if it presents itself at all.

Meanwhile, we wait. Discharge is set for Friday (I guess that would be tomorrow, technically!) and I'm very thankful that Dave is flying in tonight, albeit quite late, to assist in the discharge process. Anything could delay the discharge through the weekend, but I'm hoping it is just as simple as training us on a few things (like medicine administration and nasal-gastral tube feeding with the machine) and letting us go. Julian is being discharged with his urine tube still intact, attached to a stint in his kidney. He will drain into a bucket of sorts, so we can continue to measure his output, and in about 3 weeks they will surgically remove the tube and stint, along with his hemodialysis port. Lord Willing.

His immune system is pretty shot, and they are discontinuing the antibiotics that have been "covering" him for the last week, so also pray that we can keep him germ free while they get his immune-suppression levels stablized so as not to be too high or too low. They want him to be able to fight infections without his body fighting the new kidney (rejection).

In all, the Lord is indeed in control. I was having a bit of an anxiety attack a few days ago (the day Dave sent me over to the Ronald McDonald House for a hot bath and a nap) and it was during that bath that I had a chance to stop and think about why I was beginning to "lose it" anxiety-wise. It's been quite a 6 months for us, with many changes, and I was contemplating these things as I was contemplating how the Lord has continued to provide for us in each and every circumstance. I decided that it was fear of the unknown that I am most afraid of, fear of the unknown that causes the anxiety. I'm Irish. My husband says I have the temperment of an Irish Horse. You see, horses have the natural disposition of thinking that anything coming into their corral is going to eat them. They naturally think "worst case scenario". Irish people tend to do that as well. Don't ask me why, but you show me an Irishman and I'll show you someone who looks for the cloud in every silver lining. I think I inherited that tendency through my mom, because my dad is just a chronic optimist. I seem to oscillate between chronic optimism and Irish Horse.

Anyway, I digress. The point of my sharing this is that it occurred to me during my "chill bath" that we are not to focus on the unknowns, but we are to focus on the One Known. The One Known being our Lord Jesus Christ. There is no such thing as an unknown factor to Him. Therefore, He's got it covered. Every circumstance. He knows and He cares and He loves us. I always come back to the bottom line that He loves Julian more than I ever could, and that's saying something! And He will never allow anything into Julian's life that is not in Julian's best interests. Kidney failure? How can that be in Julian's best interests? He's 3 for goodness sakes. Well, I can't explain it. And I would never wish it on anyone. But it's not up to me. It IS up to me to be Julian's Mommy and to take care of him and to love him and be by his side. I can't explain to Julian that the hurt he is feeling now is actually healing him. I can't make him understand that I would do anything, ANYTHING to be the one on that table instead of him. If I could take his place, I would in less than a heartbeat.

Then I have an "ah-ha" moment and see that through Julian's life so far, I am actually beginning to understand what kind of love Christ had for us when he climbed up on that table for us. When He took our burdens and our infirmities and our sins upon himself, the weight of the whole world, and sacrificed himself for us. He took our place. And we have been "transplanted" into his kingdom through that loving sacrifice He made over 2000 years ago.

Time for bed. Goodnight, y'all.


05.27.2008 - Non-eventful

From Julian's COTA journal.

Last night Julian and I (Stacy) experienced a full, almost unbroken night of sleep. There were a few labs, a diaper change, and some changing of IV fluids, but Julian slept through most of them anyway! I actually got more rest last night than I have been getting at the Ronald McDonald House since his surgery. I got more sleep than Dave, who arrived in to Denver around 11:00 pm and slept from 1:00 to 5:00 am before his alarm clock went off.

The Doctors were smiling this morning, they are planning on switching him from IV fluids today to all oral meds. Dr. Concepcion just came in and said they are going to look at getting us out of here on Thursday or Friday. Wow! Right on schedule, in a perfect world. Well, we all know it is not a perfect world, but we have a perfect Lord with perfect timing, whatever the situation, whatever the need. We are praising Him for a non-eventful (?!?!?!?!) transplant.

As I type that I have to laugh. NON-EVENTFUL? Hardly.


05.26.2008 - Withdrawl

From Julian's COTA journal.

Rough night last night.

Julian was slightly feverish and "twitchy" or "tremulous" - which means he'd be just about asleep, and then jolt himself awake in some degree of apparent pain or disorientation. This went on pretty much all night. We tried an anti-anxiety med at around midnight, but it had an opposite effect: Julian was indeed lucid and relaxed (as opposed to anxious) but he was wide awake! Around 2 a.m. we tried another med to try to induce some sleep. No luck. Around 4 a.m. he was due for his next dose of oxycodone (sp?), which had the effect of bringing him back to a state of drifting off, then jolting awake. Finally, around 6, he was able to sleep without waking, for about an hour.

When the new nurse showed up after the 7:00 shift change, we reviewed the night, along with his other symptoms, and she suggested it may in fact be narcotic withdrawal, following the discontinuation of all of his IV pain meds. Sigh. Not much you can do but wait it out I'm afraid. They can have the "pain team" come in and give him something to ease the effects of withdrawal, but at this point we think the worst is over.

It's mid-afternoon, and he's had a pretty good day so far. Back to Mr. Sunshine, albeit a bedridden Mr. Sunshine. He's even asking for food! And that is no small thing! Right now he's munching on dry Cheerios as he watches Charlie & Lola on tv. I've been taking it easy, trying to catch some z's on the couch in his room before I catch the CalTrain to the San Jose airport - I didn't get a lot of sleep myself last night. I'm back in Colorado (barring anything unforeseen in the next few hours) for the next few days, then back here through his discharge, which should happen around the first of next week. Stacy will be here at the hospital on her own for three days until I return on Thursday night.

Pray that all goes to plan, and that Julian continues to progress and remain in good health. Also, pray for Stacy for the next few days. Weathering this together is difficult; going it alone is exponentially more so.

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.