Monday, November 17, 2008
We currently have no set surgery date.
Yesterday was a flurry of activity, and the schedule seemed to change a dozen times over the course of the day: Monday- no, wait, Tuesday- no-no, now it's Thursday- looks like we'll have to push it into next week- hold on, we're on again for Thursday. And so on. In the end, the Docs have yet to run one more test, which they can't administer until Wednesday of next week. So we wait.
It's exhausting, all this waiting.
The upside is that Stacy and Julian are well. He has a bit of a cough that seems to come and go, but that may be connected with allergies. It's certainly the right time of year, and if he's inherited any of my genes in that regard, allergies will be a big part of his future.
I'm flying back to Palo Alto tomorrow night, and I'll stay through the weekend. Stacy is taking the night off, and staying with Cheryl at her hotel. Julian and I will have a boys night (maybe we'll go see Ironman!), and on Saturday, I want to take him to the Cable Car Museum in San Francisco. Should be fun.
Thanks for checking in. Please continue to pray for all of us. Waiting is hard work.
Stacy's sore throat doesn't seem to be getting worse at present, and she still doesn't have a fever. Hopefully, whatever this is will soon pass, and we can resume our "normal" routine, although it's been a while since anything we did felt anything close to normal. Our plan at present is that if she's feeling better tomorrow morning, I'll fly back to Colorado tomorrow afternoon to work the rest of the week, and rejoin her and Julian this weekend. Stay tuned.
During dialysis today, the new transplant coordinator stopped in to "ask a few questions." It seems as if there are still a handful of tests that need to be run before Julian's formal evaluation can be considered complete. These include a chest x-ray, and ECG/EKG, and an MRA (?). We took care of the chest x-ray this morning after dialysis, and tomorrow a.m. Julian goes in for the ECG/EKG. It's unclear whether or not the MRA will actually be necessary, as most of the relevant information therein is already contained in a Doppler ultrasound they ran last January (basically a blood vessel exploration). We're hoping it's not necessary, as it would require general anesthetic, and the less he has to go through that, the better.
The new coordinator also let us know that the transfer of Julian's "wait list time" acrued in Denver cannot be formally transfered until the evaluation is complete - which means all the tests listed above have to be finished before they'll transfer his time.
This is all a bit unnerving, as we've been under the impression that the evaluation was complete and the time had been transfered after our first visit her last January. Hopefully our efforts today and tomorrow will seal the deal, as it were, and we can move forward at last.
We're still waiting on official results of Cheryl's final test, and there's an outside chance that they'll want to run one or two others before she's cleared. So, she's biding her time, staying here in Palo Alto until we know for sure what's going on.
Finally, it looks like the May 12th date is not going to happen, as they've scheduled a live-donor liver transplant for that date. In the world of organ transplants, livers trump kidneys (just like I'm sure hearts trump livers, and so on), and because we're in a live-donor situation as well, we can be rescheduled. It's possible, however, that we may only be bumped a day or two, so it could still happen next week.
Our dialysis nurse overheard much of the goings-on this a.m. as we were meeting with the transplant coordinator right there in the dialysis unit. When we voiced our frustration afterward, she shook her head, indicating that this is nothing new. "In my experience, you don't really have a surgery date until they're rolling you into the operating room." Sigh.
Stacy's been great through all of this, and Julian has been a trooper. Of course, being 3+ years old, he has no idea that life as he knows it so far is in any way out of the ordinary. Nonetheless, he's been a true joy through all of it. Me, on the other hand: I like to know what's coming a hundred miles down the road (I love road maps!), so this whole experience is really stretching my capacities to be flexible and go with the flow. It's easy to forget that God is ultimately orchestrating the whole affair, and all he's asking us to do is be faithful and show up for our appointments.
Please continue to pray for - among other things - our overall health. We can't transplant if Julian is sick, and it gets very difficult to take care of him if either one of us is ill. Thanks.
Stacy woke up this morning with a sore throat, and when it didn't clear up by lunch, we decided it would be best for me to stay here with Julian while Stacy checks into a hotel until she's better. Official house policy here at Ronald MacDonald House states that if someone in the residing party gets sick, the party has to leave until the sick person is better. In this case - since it wasn't Julian who got sick - they're letting me stay in the room with Julian. Otherwise, checking out means packing up all your things in order to make room for another family. That would be a serious problem, in that when we came here we were packed to stay for many months.
So, Stacy cleared it with the staff, and off she went. Julian and I are going to walk across the street to the mall for dinner and a little walk around before bed. Tomorrow morning, I'll take him to dialysis.
Cheryl is still here with us in Palo Alto, but wanted a little space of her own (the rooms here are very snug). Since she's an employee of Marriott hotels back east, she gets the smokin' deal room rate. So she's on her own for a few days as well.
We should find out tomorrow whether the May 12th date is going to work for Julian's transplant. Please pray that everyone is healthy for the big day.
We’re in the final phase of testing for our friend and potential live-donor, Cheryl Humble. At this point, we’re just waiting for some final test results. If all goes to plan, and Cheryl is approved as the donor, we’ve been advised that the transplant could take place as soon as May 12th, 2008. Good news! If the 12th doesn’t work out for some reason, the next opening in the transplant schedule is May 27th, 2008.
We’re so grateful that Cheryl has made herself so available during this time. She’s willing to stay with us here in Palo Alto until the transplant takes place, assuming that the May 12th date works out. For those who don’t know Cheryl, she’s from Rhode Island, so it’s not like she can just drive home for the weekend – this is a major commitment for her, and we’re thankful.
In the mean time, Julian is on hemo-dialysis three times per week, for three hour sessions each time. I sat with him yesterday. He’s a very good sport, but it’s hard for him not to get bored. Just sitting there. For three. Long. Hours. But that may all be changing in about a week. If the 12th works out, they’ll admit him on Saturday the 10th, start prepping him and Cheryl on the 11th, and conduct the surgery on the 12th.
That’s all for now – thanks for checking in.
I had a great time this past weekend with my family, and am only just now getting to write about it. As you may know, I (David) am commuting back and forth between Colorado and California each week, so I can work during the week in Longmont, and spend time with the loved ones in Palo Alto on the weekend. It's rough on all of us, all this time apart, but necessary at this stage as we wait for a kidney.
Currently, Julian is on dialysis three times per week. It's helping, but as it's effectively altering his blood chemistry, we think it's causing him to feel things he's never felt before. Not bad, just different. The net effect for us is that he seems to be, shall we say, more of a handful.
So pray for all of us: for me, as I fly back and forth; for Stacy, as she's in the thick of it all, 24/7; and for Julian, as he's trying to make sense of all this.
Pray also for Cheryl Humble, who is at this very moment in Palo Alto, for what we hope is the last round of testing as a potential live donor. She's excited for this opportunity (!), and we're thrilled that she wants to give of herself - literally - in such a meaningful way.
Okay, so last weekend, we went to Santa Cruz on Saturday - see the new video on YouTube; then on Sunday, we trekked into San Francisco to ride a cable car (stay tuned for more video of that). Exhausting, but so much fun!
That's all for tonight - it's getting late. Thanks always for your prayers and support for us through all of this.
I sat with Julian during his dialysis session on Friday morning, which, for the most part, was uneventful. It took a little while to get the machine going before they could actually hook him up, but once things were underway, it was smooth sailing. As the dialysis nurses like to say, “boring dialysis is good dialysis.”
Yesterday, we took Julian into San Francisco, to Fisherman’s Wharf. It was super busy up there, but fun nonetheless. We had lunch at Boudin, one of our gastronomical happy places, followed by Julian’s very first trolly car ride (not to be confused with the San Francisco cable car – we’ll do that some other time), and a ride down Pacific Coast Highway to Half Moon Bay before heading inland. It was a great family time, and although I only get to see my family half-a-week at a time, we’re making good memories when we’re together. And if you have to wait somewhere for an organ transplant, you could do a lot worse than central California.
So, now that the course has been set regarding Julian’s urological issues, he’s been reactivated on the organ transplant list, and may very well be near the top of that list. Meanwhile, our friend Cheryl is undergoing the final rounds of testing in the next couple of weeks. It all seems like we may be getting down to the wire, and ultimately we want the best possible kidney for our son. Obviously, it’s impossible for Stacy and me to tell which kidney is the best one, so we’re praying that God figure that part out.
It’s a difficult thing to pray for – a donated organ. If we end up with an organ donated by a deceased person (“cadaveric” in organ transplant parlance), it means that someone’s life just ended, and that’s how you received the organ. Which is fine – I checked the little box on my driver’s license to donate my organs in the event of my untimely demise: it’s not like I’d need them once I’m gone. Obviously, none of “all that” is in our control, but it still feels strange somehow.
Stacy recently purchased a cross pendant for a necklace that has the entire Lord’s Prayer inscribed on it. She says it reminds her that when she doesn’t know what or how to pray, Jesus gave us that as a starting point. So even though it’s confusing sometimes, knowing what exactly we should pray for, it’s comforting to know that we can always go back to “Our Father, who art in heaven, hallowed be thy name…” In the end, Julian is God’s child, and we have every confidence that he’ll take care of his own.
Friday, November 14, 2008
Julian had his second round of dialysis today. 90 minutes this time. I'm sure we gave the nurse fits as she hooked him up - it's hard not to feel a little panicked when your child is hooked to a machine you have no control over. But all went well - so well in fact that Julian fell asleep before the session was over. Not much fun waking him up to do the disconnect and change the catheter dressing (ouch!), but he fell asleep again quickly.
Julian's got a new video up on YouTube, taken yesterday during dialysis round 1.
Julian spent today in bed, recovering from last night's surgery. He woke up late this morning, still feeling sick, but improved significantly through the course of the day.
The dialysis tech set up the machines around noon, but the nurses didn't arrive until 4:00. By the time we got him hooked up and dialyzing, it was 5; after a 50 minute session - which passed without incident - it was nearly 6. Julian did very well during the dialysis, didn't seem to notice any discomfort during the process. The biggest discomfort for him seemed to be that he has to wear a mask when connecting/disconnecting from the machine.
They're going to dialyze him tomorrow and Sunday as well, then begin him on a Mon-Wed-Fri routine in the out-patient dialysis clinic here at the hospital. However, due to a scheduling issue in that clinic, we won't be able to start going there until late next week - probably Friday. So, Julian will most likely be in-patient until then, if for no other reason than for his dialysis. I anticipate that he'll be disconnected from the probes and fluids before the end of the weekend. He's such a trooper.
We spoke with Julian's Urologist, Dr. Kennedy, this evening as well. We're going to forego the MRI next Wednesday and opt instead to go directly to the kidney transplant. Julian will continue to urinate through his vasecostomy for the next 2-3 years, when we can try the cystoscopy again. If it doesn't work at that time, the Urology Docs will try some creative reconstruction that should allow Julian to have "alternate" urinary function without the burden of a colostomy bag.
So, things are progressing well at the moment, and we're praying that the trend continues.
The nurse came in around 6 p.m. and told us that "they're ready for you downstairs." We bundled Julian up and followed the nurse down to the second floor to the pre-op area, where we were checked and re-checked: got to be sure they're performing the correct procedure on the correct patient. Finally, around 7 or so, they gave him a push of Versed to ease his separation anxiety. He began to get loopy almost immediately. We were at peace as we left him in the surgeon's hands.
Around 8:30 Dr. Kennedy (urologist) tracked us down and let us know that the cystoscopy and valve ablation did not go according to plan. There is too much scar tissue along the course of the urethra for a simple (!) valve ablation. Therefore, the vasecostomy remains open. Sigh... So, the next step on that front is to perform an MRI of that region to get a better idea what the specific problem(s) are, and either a) perform a series of operations prior to transplant that could solve the problem(s), or b) move right to the transplant - possibly within the next week or two - and put off the cystoscopy (and other urological procedures) for a few more years. It's possible that there could be a two step process involved:
• Step 1 at age 5-6: re-route the bladder outlet using native tissue (from an existing ureter or the apendix) to form a duct that would exit the abdomen at a catheter. At this time the vasecostomy would be sealed.
• Step 2 at age 10-12: reconstruct the urethra between the bladder and the penis in order to restore normal urinary function.
Not sure which option we're going to go with just yet: the MRI findings will have a lot to do with that decision, as well as the input from Dr. Concepcion, our transplant surgeon. Stacy and I are hoping to go right to transplant, but we don't know as much as the Docs do about the long term effects of either course of action, so we'll be doing a lot of listening.
Okay, back to the surgery... Around 10:15, Dr. Concepcion found us and let us know that the dialysis catheter placement was successful, although they tried on the right side first, only to discover that there was significant scarring where they needed to work. So, Julian's dialysis catheter is on the left side.
We spent about an hour with him in recovery before wheeling him back up to our room on the third floor. Post-op recovery is no fun - Julian is asleep now, but he was in some measure of discomfort as he came back around. He's on oxygen, and they've given him something for his upset stomach, as well as something for his pain.
Overall, we're very pleased with how they've taken care of us here at Stanford. Everyone, from the surgeons down to the nurses on the floor are very reassuring and we're confident we're in good hands. It's after midnight now and I need to get some rest. We'll be meeting with the Docs again tomorrow to discuss our next action steps, including dialysis, which will probably commence in the morning. Julian is looking pretty fragile right now (see photo above) but he's a fighter. Please continue to pray that God continues to sustain Julian - and Stacy and me - through all of this.
It's nearly 2:00 p.m. and we're still waiting for our surgery. However, Dr. Concepcion (transplant surgeon) just stopped in to advise us that the surgery today will consist of the cystoscopy (by Dr. Kennedy) + the installation of a hemo-dialysis port (by Dr. Concepcion). With this arrangement, there should be a short recovery time - we could be discharged as early as tomorrow, once it's established that Julian can urinate and the dialysis port functions properly.
The Docs are hot to get dialysis started: creatinine is still around 5.5, but Julian's B.U.N. (blood urinary nitrate) is well above 100 (20's is normal, 80's is very high). Julian's blood is very uremic, and they want to treat that right away. Total kidney function is less than 10% at present and still declining. Dialysis will help, especially as we wait for an organ.
In the mean time, Julian is very bored. His last solid food was at 5:00 a.m.; last clear fluids were at 8 - nothing but I.V. drip since then. There was talk earlier that the surgery might be pushed until tomorrow (or later - !), but Dr. Concepcion assured me just now that he will not go home until Julian's surgery is complete. Stay tuned - I'll post more once we're out of the O.R. and on the road to recovery.
It's 9:30 p.m. here in Palo Alto, the end of a long day. Julian's been admitted to the hospital in anticipation of his bladder surgery tomorrow afternoon. Originally, we were to admit tomorrow morning, but the Urology N.P. doesn't want him to dehydrate before the operation. As such, they're going to put him on an I.V. drip tonight in order to stabilize his electrolytes and fluids for the surgery.
Today's V.C.U.G. went well: I'm not entirely sure what V.C.U.G. stands for, but basically they plugged his vasecostomy and filled his bladder with a dye that could be seen by a fluoroscope; then they pumped the bladder full of the dye to see what the bladder looks like and see how it behaves under pressure. The Urologist who will be performing tomorrow's surgery also performed the V.C.U.G. today, and was pleased with the current condition of Julian's bladder. Until now, we had no real idea whether or not Julian's bladder could ever function normally; now it looks like Julian could actually have normal bladder function after all.
So tomorrow they'll do a cystoscopy, where (cross your legs guys) the Docs will go in through the penis, all the way through to the bladder, working on the valves along the way. In particular, they'll ablate (i.e. cut with a laser) the posterior urethral valve at the exit of the bladder, which was the initial cause of most of Julian's problems starting while he was in utero.
Stacy and I were reflecting over dinner tonight how Julian's kidney issues have kind of overshadowed his bladder issues up until now. It dawned on us that by tomorrow night, Julian will no longer have a vasecostomy and should be urinating through his penis. We're nervous, but excited at the same time, as we are at long last on the road to some semblance of normalcy with regard to Julian's day-to-day quality of life. In other words, we may actually be able to start potty training soon!
If all goes well tomorrow, and assuming no subsequent bladder surgeries are required, Julian could be set for his kidney transplant as soon as three weeks from now. Of course that depends on the availability of a viable organ as well - see Stacy's post from April 4th for more info on that front. In any event, we're praying that the transplant will happen sooner (i.e. 3-6 weeks) rather than later (i.e. 3-6 months).
Another item to pray for: it's very likely that one of the outcomes of this surgery is that Julian's kidneys may start to decline more rapidly, which would necessitate dialysis, even if only to get us through to the transplant. We're stating a preference for hemo-dialysis, rather than peritoneal dialysis, which is the kind we tried last December. We're going for the hemo-option because a) it didn't work last December, and b) hemo would take place a couple times per week in the hospital - a much more manageable situation for Stacy, who will be his primary care-giver through all of this (I'll be commuting between Colorado and California as long as Stacy and Julian are here). So, while they're working on his bladder tomorrow, it's likely that they'll also install a hemo-dialysis port at the same time, just in case.
Okay, now it's nearly 11:30. Since I started this post, the nurses have come in and a) installed the i.v. and b) taken a urine sample. Julian is finally asleep; I'm about to follow suit. Stacy is at the Ronald MacDonald House, getting a solid night in preparation for tomorrow's surgery.
I'll post more tomorrow - stay tuned and keep in touch.
Hi everyone! Just a quick update:
Julian and I are traveling to Palo Alto (San Fransisco Bay Area) on Sunday, with a one-day stop at Disneyland. Julian has his Bladder Surgery scheduled for Thursday the 10th of April. The doctors at Stanford have agreed that it is best to address Julian's bladder issues prior to having his transplant, because they want to create the optimal environment for Julian's new kidney to thrive. If we wait until after the transplant to do the bladder surgery, the transplanted kidney may incur some damage if the bladder surgery is either unsuccessful in whole or in part, or if there is more work than we realize that needs to be done for him to have a working bladder.
If the initial bladder surgery is successful and does everything we need it to do, (ie get the posterior urethral valve working again), Julian will only need to heal from the surgery (about 3 weeks healing time) to be ready to receive his new Kidney. My friend Cheryl Humble just completed a battery of testing in California to see if she is a suitable donor. We already know she matches in blood-type and necessary antigens, but she needed a few kidney function tests in order to determine if she could give one up without a problem.
If Cheryl is suitable, we will simply schedule the transplant and know exactly when it will happen. If she is not suitable, Julian will be placed at the top of the transplant list (as he has waited 11 months already, and kids in Palo Alto rarely wait even a year), and we will hang out in Palo Alto waiting for them to call us with a cadaveric kidney.
We will be temporary residents at the Ronald McDonald House at Stanford, here is their address if any of you wish to write to us; Dave and Stacy Phillips, C/O The Ronald McDonald House, 520 Sand Hill Road, Palo Alto, CA 94304-2001 otherwise you can e-mail or call my cell (303)335-8753 or Dave's cell (303)579-7227. Dave will be commuting during the wait times between surgeries, and for the 100 days of follow-up after the transplant, spending Sundays-Wednesdays in Colorado and Thursdays-Sundays in Palo Alto.
We want to thank you all for your continued prayer support as we enter this crucial time. Sometimes I'm not even sure what to pray for, but the Lord's Prayer comes to mind in those times when I have no words, and I always know that His Holy Spirit intercedes with prayer where my words fail.
A quick note to let you know that Julian has a bladder surgery scheduled for April 10th - just a couple weeks away. This will be the first step towards his transplant, as the Docs in Palo Alto want to take care of Julian's bladder before they transplant the new organ. That way, the risk of post-transplant infection will be minimized - especially critical as he'll be on immune-suppressants after the transplant. Not sure yet when the transplant will take place, but the first step in the bladder reconstruction process will take place on April 10th.
We just found out today that we have a room at the Ronald MacDonald House in Palo Alto, starting on April 8th. This is huge relief, as it was unclear until now where we'd be staying long-term while in California. Julian needs to stay close to the Children's Hospital at Stanford while waiting for a kidney, and he may need to go back on dialysis between the bladder reconstruction and the actual transplant, so we're very thankful for the space at Ronald MacDonald.
Please continue to pray for Julian's continued health. He had a virus two weeks ago that he's very nearly over, and he needs to be in good health in time for the operation. His labs are holding steady, and we're doing our best to manage Julian's blood chemistry with the supplements we've been giving him over the past few years. As his native kidneys continue to decline, however, this becomes an increasingly delicate balance. Please pray that God sustains him through the bladder surgery (hopefully only a single operation), all the way through the transplant and subsequent recover period. He's in very good spirits, and continues to be a ray of sunshine for everyone he meets.
That's it for now. Good night.
We flew to Palo Alto on Monday morning for a whirlwind tour of appointments and exams at the Children's Hospital at Stanford, following up on our trip last January. The transplant surgeon and his team have decided that they'd like to reconstruct Julian's bladder before doing the transplant, thereby reducing the risk of infection that could result from doing the reconstruction after the transplant, when Julian will already be on immune system suppressants. Everything at Stanford seems to be done in the opposite manner than that which we've prepared for, so this is requiring something of a paradigm shift on our part. Not that there's anything being said by the team at Stanford that doesn't make sense - it's just different. As much as we'd like to believe that medicine is hard science, and that there's only one correct way to do a given procedure... well, that doesn't seem to be the case.
They drew blood while we were there as well, and we're still waiting for the lab results. We're a little on edge, as Julian's total kidney clearance is somewhere in the 8% range at present, and the doctors in Denver are getting nervous.
We're getting nervous too, but are trusting that God will lead us through this as we seek the best possible treatment for Julian's current condition. In the mean time, he's as happy as can be, and has no idea that anything is really wrong (although he's probably starting to wonder why we spend so much time at so many hospitals...).
Anyway, we're still waiting and praying, hoping that the course we're on is in fact the best one for Julian. Thank you for your continued prayer and support as we go through this.
We received a call today from the Docs at Denver Children's Hospital, advising us that Julian's most recent labs (earlier this week) were not good - his approximate kidney clearance is roughly 8% at present. They asked when exactly we might be getting the transplant in Palo Alto at the Children's Hospital at Stanford University.
So, we're off to Palo Alto on Monday in order to (hopefully) finalize things with them and activate Julian on their list. We're hoping that once he's active, it won't be more than a month or two (at most) before a viable kidney comes available.
Once we've finalized everything at Stanford, Stacy will return to Phoenix with Julian to spend time with her family, while I return to Colorado to resume work and close on the sale of our house. I'll be renting a place for a while, and commuting/telecommuting between here and Phoenix, until Stanford gives us the signal that a kidney may be available soon. At that time, Stacy and Julian will move up to the Ronald MacDonald House in Palo Alto, and I'll commute between CO and CA. Whew!
After the transplant, Stacy and Julian will reside at the Ronald MacDonald House for about 3 more months for follow-up, after which time they'll rejoin me here in Colorado.
It's going to be a very busy season as we each divide our time between several different places. Please pray that God sustains us through all of it, and most importantly, that God sustains Julian's health leading up to and following the transplant.
Below is an excerpt from an email that Stacy sent out last night offering a synopsis of the results of our trip.
I just wanted to send a quick update to everyone in my e-mail address book. In a few days Julian will be listed on the Organ Recipient regional list for the Lucile Packard Children's Hospital in Palo Alto. He has been on the Denver Children's Hospital list for a kidney transplant since May of last year, which is almost 9 months, and his time accrued here in Denver will transfer with him to Palo Alto's list. Since children waiting for kidneys in Palo Alto don't typically have to wait even 1 year's time, it is likely Julian will be "up" for a kidney in the next few weeks-to-months.
We do have a friend who is being tested as a potential living donor, which is what is preferred in terms of prolonging the life of the transplanted kidney, so we still have hope for that option. But if she is not a match, or if her blood reacts "positively" (which isn't good) with Julian's, then we will be reconciled to receiving a cadaveric kidney and will know that it is God's best for Julian.
What this means is that Julian and I (Stacy) will be moving in to the Ronald McDonald House at Stanford in a couple of weeks, to wait for his kidney. After his transplant we will need to remain there an additional 100 days for their follow-up protocol. Dave will remain in Colorado, and come see us on weekends when he can. When the transplant occurs, he will take 2 weeks off to come be with us, but then will need to get back to work. Please pray that we weather the separation from him well!
The reason we are transferring his name to the Palo Alto list is that Stanford does a "Steroid-Free Transplant Protocol" which would keep Julian from having to be on Steroids for the rest of his life as part of his anti-rejection immune suppressant medication regimen. Denver uses Steroids. We will continue to be listed on Denver's list, but only as a back-up in case he is disqualified from Palo Alto for some reason.
Thank you all for continuing to lift our family up in prayer, and if any of you would like to donate a tax-deductible donation on behalf of the expenses associated with Julian's transplant, you can do so at www.cotaforjulianp.com or go to the Children's Organ Transplant Association website www.cota.org and find Julian P.'s name on the drop-down list. You can donate right from your computer if you like.
Then, as if that weren't enough, this morning, we checked Julian in for surgery at Denver Children's Hospital to have his peritoneal dialysis catheter removed. All went well, and when Julian revived from anesthetic, the first words out of his mouth were "get down, run around."
An interesting note: when we returned to Children's to resume dialysis training in early January, we prayed that if for any reason, dialysis was not the correct track to pursue for Julian, that He would make it physically impossible for the dialysis to work. On the day we returned and hooked him up to the machine, for reasons unknown, the dialysis physically would not work. Not long after, we decided to suspend training until we could determine whether or not Julian really needed the dialysis at all (determined through his blood work). Today, after the surgery, the surgeon came to let us know just how Julian was doing. When we asked him what happened to the catheter, he explained that it was completely clogged with what he described as an unidentifiable substance: it was the consistency of fibrin but the wrong color; it was the color of the fatty omentum, but the wrong consistency. After all his experience in surgery, he was unable to explain what the substance was.
That's all for tonight - thanks for checking in.
Yesterday we took Julian to Children's in Denver for a regular follow-up appointment at the Kidney Center. Julian's labs look very good right now, and he's full of energy. On top of that, he's been eating like he's never eaten before, possibly to make up for his illness earlier this month, but partly (we believe) because of the new approach we're taking to administering his meds and supplements. Basically, we're giving him his meds straight up, instead of mixing it in with his food. That way, we have tighter control over when he gets them, and we can be sure he's getting his full dose every time. But seriously, the boy is putting the food away! He's averaging something like 1200 calories a day right now, but last week he had several days at 1500+! When we take into account that pre-illness, we were grateful for anything over 600 calories a day, we're considering this a minor miracle!
So, he's growing, and his PTH (see the January 9th entry) is 308 presently. Not quite below 300, but very close, and still falling. Creatinine is back up to 4.2, and BUN is up to 84 - twice what it was a couple weeks ago. That's a little troublesome, but it doesn't seem to be affecting his demeanor or quality of life. If we can manage that through diet (we spoke with his Dietitian yesterday about that too), we should get that back to a more normal level.
Overall, Julian is doing very well. So much so that his Dr. asked us when we wanted to take the dialysis catheter out. Julian's quality of life is not what it was pre-catheter, and there's a possibility of infection or complication if we leave it in, so we're excited to have it taken out. That will happen next Wednesday January 30th. Please pray that all goes to plan.
And finally, tomorrow, we take Julian to San Francisco to the Children's Hospital at Stanford University. Re-read the January 9th entry for more info on that trip as well. We'll do all the touristy things over the weekend (I've never been there before), then on Monday we have appointments all day with the various teams who may be involved in Julian's transplant and subsequent care. We fly back on Tuesday - just in time for surgery on Wednesday.
A special thanks goes out to my employers, Moore & Bishton Architects in Longmont, CO. They've been incredibly supportive of our family and flexible with my work schedule, which has allowed me to go to all these appointments, trips and surgeries. I can't imagine not going to any of these things, but one can never take that kind of consideration for granted. Thanks Tom & Dave.
That's it for now. I'll post more when the dust settles.
A point of clarification though - someone asked if they could still donate, or if it was only something they could do at Christmas. Rest assured, as long as that little "Donate" tab is still at the top of this page, you can still make a donation. And yes, we are still in need of assistance - some of our most expensive costs have yet to be incurred. To wit, we haven't actually had the transplant yet.
So, thanks again to those of you who have made contributions, as well as to those of you still considering the possibility.
Julian is doing really well. Since he was sick over the New Year's holiday, we've taken a different approach to his medication/supplementation and his personal nutrition. Basically, we're changing the way we feed him and how we give him his meds. The results seem to be very good - he's actually hungry (!) and asking for food (!!!) on a regular basis. He's gaining weight and has plenty of energy for running around and laughing. He's so much fun to be with!
We have an appointment on the 24th of this month, when we'll get to see what effect his new food/med routine is having on his blood chemistry. Our hope is that we can forestall dialysis altogether, and wait until an organ becomes available. The dialysis catheter is still in - we've decided not to pull it for the time being. We'll keep it in as a back-up, in case we have to try dialysis again in the event that his kidneys decline further before an organ becomes available for transplant. We want to subject him to as few surgeries as possible, and the last thing we want is to have to put it back in later because we decided to pull it now.
That's the news for now - time to get ready for work. Thanks for checking in.
Happy New Year everyone! Lots of news this time - I'll try to be brief.
Stacy and Julian came back from Phoenix on December 27th, and on the 28th (which happens to be our wedding anniversary) Julian got sick. As in, violently throwing up every twenty minutes for 6+ hours, starting at about 10 p.m. Rough night. We went to Children's for labs on Saturday, after it seemed like Julian had rallied. Later that night, however, it became clear that he was still sick. On Sunday, we took him back to Children's, this time to the ER, because we were afraid he was becoming dehydrated. The nurses attempted to give him in IV in 7 (seven!) different places, but they kept blowing the veins. The next option was an IV in a peripheral jugular vein. At this point Julian was exhausted - I'm sure he thought he was being tortured - and we asked if there were any other options. The docs suggested an anti-nausea med, and we tried to feed him. Thank God - he kept it down. So, we took him home, and Stacy and I (mainly Stacy - have to give credit where it's due) rehydrated Julian orally: 5ml of fluids every 6 minutes or so, for hours. It worked. Julian recovered, and although the virus lingered for over a week, we're happy to report that he's back!
So, the other big news is that we went back to Children's this past Monday to resume dialysis training. We arrived, checked in, got Julian settled, hooked him up to the machine and pressed GO. And nothing happened. The machine was unable even to fill Julian with the dialysis fluid. This is very unusual - normally when there are problems, it's on the drain cycle. We tried for over an hour to initiate the fill cycle, but it would simply not go. So, the docs ordered an xray, and discovered that the catheter had again migrated up in his abdomen. We also reviewed his labs from that morning, and discovered that his labs were surprisingly good, especially considering his recent bout of illness. What to do? The docs were recommending a surgical repositioning of the catheter, but Stacy and I had a different feeling about the matter. So, after some deliberation, we decided that instead of surgically repositioning the catheter, we'd remove it and go back to managing through supplements and dietary regulation. The long and short of it is that there are more than one philosophy re: the treatment of someone in Julian's condition, even within the medical community. We think that through closer attention to what Julian is eating on a regular basis, we can bring his lab values back into acceptable ranges. Of particular concern are his creatinine level, as well as his parathyroid hormone (PTH). High PTH levels may be an indication of advancing levels of bone disease, and Julian's has been as high as 1400. The docs want to see it below 300. Right now it's in the 600+ range, so we're hoping and praying that we can bring it back down.
So, that's the news. Stacy takes Julian back for labs tomorrow, so we can see how we're doing. The dialysis catheter is still in, so we're still caring for it, but we're waiting for the docs to schedule the removal surgery.
At the end of the month, we're taking Julian to the Children's Hospital at Stanford University in Palo Alto, CA, for a transplant evaluation there. They have a transplant protocol that employs steroid-free anti-rejection medications post-surgery, with significant rates of success. This is a very big deal, as steroids can have some pretty serious long-term side effects. We'll post more info as it becomes available, but for now, just pray that the visit goes well. O, and they've indicated that the wait may be as short as 4-6 months for an organ, so that's a big deal too (we're currently on the list here in Colorado, which may be 1-2 years). The sooner we can get the transplant done, the better. All things in God's time though, no matter how much we may want to rush.
Julian would like to contribute to this blog entry, so here he is...
Okay, that's enough for now. Good night, from all of us.
Sorry for the delay everyone - it's been a bit hectic this holiday season. Stacy, Julian and I were in training for Julian's dialysis for the past two weeks, but early last week, a complication arose in his treatment that prevented us from proceeding with his treatment or from taking the dialysis equipment home and treating him here. Basically, the catheter used for his peritoneal dialysis had migrated up in the peritoneal cavity, which effectively disabled it. Our training nurse and the doctors have seen this kind of thing before, and it may resolve itself as time passes. If not, though, the surgeons may have to go back inside and reposition the catheter so it will work properly. We're not too keen on that alternative, so we're praying that the situation will resolve itself. Julian goes back for a follow-up x-ray in early January, after which we can finish up our training and start to treat him at home.
In the mean time, Stacy took Julian to Phoenix to spend Christmas with her folks. They'll return on the 26th.
Please continue to pray for Julian's health. So far, he's still the happiest little boy I know - 25 pounds of sunshine!
Merry Christmas & Happy New Year!
Julian had a follow-up appointment last Thursday to flush the new catheter, change the dressing at the catheter exit, and remove the stitches that were holding the exit wound closed post-surgery. Everything went well until it was time to take the stitches out. It took a nurse, a doctor and me (holding him down) what seemed like forever to finally remove the stitches. Julian, if he were able, would describe the incident as traumatic. After it was over, we went across the street and had pizza. One of Julian's favorites.
Overall, Julian's recovery has been a miracle by itself. Less than a week after the surgery, he was basically back to his normal, energetic, sun-shiny self. Which is a huge relief to Stacy and I, as we're always concerned about how all of this medical intervention might affect his quality of life, here in the present and off in the future. He's a little confused about the tube now wrapped up under his shirt, and has asked us a few times if he can take it off, but he doesn't seem to be experiencing any kind of pain or discomfort.
So today, dialysis training begins. Stacy and I have been a collective bundle of nerves since the surgery, fearful of possible infection, and just anxious in general about what this all means and what the future holds. Training takes two weeks (!) which means bundling Julian up in the car and driving him to the new Children's Hospital in Aurora, about 50 miles away - every day. One of my concerns for him at this point is that he'll be bored. I mean, what do you do with an energetic 3-year-old for a full day at a hospital when you're supposed to be paying attention to an instructor and he's supposed to be tethered to a machine? I guess we'll find out. We're also interested to see what effect the dialysis has on Julian's overall health and blood chemistry, which is how they monitor how severe his condition is. We're praying that he starts to grow and gain weight, one of many concerns for us.
It's all a little overwhelming right now, on the brink of something so big and new. I'm sure once we get in and start learning how it all works and how we, as Julian's home care-providers, are supposed to use the equipment and monitor his progress, the nerves will start to settle down. But in the mean time...
Please pray for all of us, for health for Julian, for all the stuff mentioned above, and that Stacy and I will get enough rest. That's a big concern for me especially, as I'll be juggling my job and the new training regimen for the next two weeks. Also, those night-time diaper changes... anyway, we're just at the beginning of a long, new road, and I'm tired already.
Until next time...
Our big prayer request right now has to do with nutrition. Julian has never been a big fan of eating, and right now, with the new catheter in place, getting his minimum intake into him is a real challenge. Please pray with us that he gets enough food to heal and grow.
Our other big prayer request has to do with infection as the wound heals. The point of entry for the catheter is below the "belt-line" on his diapers, which makes it difficult to keep it dry. Of course, we're under strict instructions to do just that, so we have keep his diaper changed at least once every 2 hours - 24 hours a day. That means that if we put him down at 9 tonight, one (or both) of us will be up at 11, 1, 3, 5 and 7 to change his diaper. So I guess sleep is our third big prayer request.
All in all, I think we're doing pretty well. We report back to TCH for a training orientation this Thursday morning (12/6/07), and begin actual training the following Tuesday (12/11/07). If all goes to plan, we should be finished with training by Thursday 12/20/07 - in time for a quiet Christmas at home.
Thanks for checking in. Until next time...
Julian was admitted for surgery on Thursday November 29 at 10:30. The surgery, scheduled for 12:30, was supposed to be an outpatient procedure. Kissing him goodbye as he went under the anesthetic was one of the hardest things we've ever done, and brought back a lot of memories of his first few weeks of life in the NICU at The Children's Hospital 3 years ago.
The surgery took about an hour, after which time we were able to reunite with him in the recovery room. Around 5:00, the nurses were talking about discharge orders, but Stacy, following her mother's instinct, asked them to draw bloodwork and send it to the lab - just to make sure all was well. Leading up to the surgery, Julian was not allowed to eat or drink anything, and because his food is the only way we have of getting his regular meds and supplements into him, she suspected that something might be out of balance. Sure enough, his bicarb as very low, which means that his blood was slowly becoming acidic. This in turn made him feel lousy, not wanting to eat. They admitted us for the night so they could hook him up to an i.v. in order to restore his electrolyte levels.
By early afternoon yesterday, things were looking better, so they discharged us. We packed up all our things, and headed down to the cafeteria for a quick dinner before the long ride home. What timing - as we were eating, Stacy spotted Dr. Hall, the doctor in charge of the NICU, a man instrumental in Julian's recovery 3 years ago. He marveled at Julian's condition, even post surgery, and commented that his brother had a child who had a kidney transplant some years ago and is now thriving. Encouraging news for us at this point. We asked if he liked the new facility (TCH's new campus is amazing!), and he said yes, that he was just down for a bite to eat before doing evening rounds. "Same ol' same ol'." I wonder if he realizes how much his "same ol'" means to those of us whose children he's helped.
We arrived home last night around 7 or 8. We were able to change his diaper and put his pajamas on without incident, although it's pretty clear he's very tender.
This morning Stacy and Julian slept in while a neighbor drove me back in to Longmont to retrieve the van I left at the grocery store on Thursday morning. Today we took it easy - we're all catching up on our sleep - mainly watching movies (Monster's Inc. anyone?) and cleaning house in between diaper changes and meals. Thankfully it's the weekend and we can stay pretty close to home.
Julian seems to be doing well. He's still tender - they had to cut the abdominal muscle to insert the catheter, so it probably feels something like recovering from a knife wound. No sudden moves, lots of lying in place. However, his cheerful spirit is still in tact, and he is still the ray of sunshine he was pre-surgery.
We start training next week, for two weeks, and our biggest concern right now is infection - just keeping the area clean and dry. Thanks to you all for your prayers through all of this. Keep it up - we're not out of the woods yet.
Our fondest hope is that none of this will have a negative impact on Julian's quality of life right now, and that it will in fact have a positive effect on his long term quality of life. Please pray that this is the case.
Please pray - tomorrow's the day.
We check Julian in at Denver Children's Hospital at 10:30 a.m. for his surgery at 12:30. The catheter surgery is an outpatient procedure, so I don't anticipate it will take very long. However, we're always nervous when our boy goes under the knife, so obviously we'll be praying for a successful operation.
We're told it should take about a week for the catheter to heal in, after which we'll start training for Dialysis. Training will take place at Children's Hospital, and can take up to 10 days: that'll be a bit trick to work in around my work schedule, but my employers have been incredibly supportive of Stacy and I through all of this (thanks guys). Once training is complete, we'll dialyze Julian at home while he sleeps. All of this is big and new and scary for Stacy and I, even though the docs are telling us it's really not that big a deal. Julian however, is a ray of sunshine through all of this, having no idea that anything is out of the ordinary. He really is an incredible blessing, and a source of encouragement to Stacy and me.
We just spent Thanksgiving in Phoenix (family) and SoCal (Mickey & friends) - one last hurrah before we make the big change. After everything settles down and we're close to establishing a routine, we plan on spending a quiet Christmas at home here in Colorado.
The newsletters are on the way... most of them anyway. In the mean time, please pray for Julian's health as we make the change to life with dialysis.
We met with Julian’s doctors in Denver on November 1st to revisit long-term and immediate strategies for Julian’s care. Julian’s situation is finally to the point where dialysis can no longer be avoided. So on November 29th, Julian will undergo surgery to have the catheter installed whereby we’ll be able to hook him up to the dialysis machine. Then once he’s healed, Stacy and I will undergo training so we can treat him at home. We're nervous, scared about the unknown. But we're convinced that at this point, this really is the best thing we can do for him.
We'll post more information as things progress - certainly when he goes in for surgery. In the mean time, our annual newsletter is almost, nearly ready. If you don't receive one in the next few weeks, drop us a line and we'll add you to the list.
Thanks again for your continued prayer and support.
From Julian's COTA Journal.
We celebrated Julian's birthday in
The doctor we met with in
So now we wait for an organ. It’s a difficult thing to pray for, because unless the organ comes from a living donor, it has to be ‘cadaveric’, which is a tidy term that means it came from someone recently deceased. Kidneys from live donors have a better track record for longevity, but a cadaveric kidney will work too. In any case, we’ll take what God provides, and let him work out the details.
From Julian's COTA Journal.
We met with Dr. Lum at the kidney center at Children's last Thursday (August 9th), fully expecting to be told it's time for dialysis, and to put a surgery date on the calendar. To our surprise, Dr. Lum made a few changes to Julian's medication regimen, and asked that we bring him in for labs in 7-10 days. So, we've made the changes, and Stacy will take Julian in for labs on Monday, to see if the changes have made the necessary difference. We sure hope so.
This morning we met with Dr. Koyle (Urologist) to talk about the course of action we might take pursuant to Julian's bladder and urethral passage reconstruction, as it relates to his dialysis and/or kidney transplant. Specifically, we wanted to know if it was possible to do the reconstruction surgery at the same time the dialysis and/or kidney operations took place. He'd like to wait until after the kidney is in before rebuilding the bladder and reconstructing the urethral track for various reasons. We also found out that in terms of donor/organ matching, one of the most significant factors when considering a kidney transplant is the age of the organ. Ultimately we'd love to see Julian receive a 0-point antigen mismatch (i.e. a 6 out of 6-point match) organ, but we learned today that it would be better to receive a 3-point antigen mismatch from a live donor than it would to receive a 1- or 2-point antigen mismatch from a cadaveric (i.e. deceased) donor. So we're hoping and praying that God provides what He knows we need.
We also learned this morning that Dr. Koyle plans to move to Seattle sometime this fall. This is significant to us in that Dr. Koyle's work and presence in Julian's life was one of the main reasons we stayed here in Colorado after Julian was born. It will be possible for us to travel with Julian to Seattle for appointments and procedures as required, but that adds a level of complexity we hadn't taken into account. We'd love to get as much of the surgical work done as quickly as possible at this point, so that Dr. Koyle can participate in Julian's transplant and subsequent care to the greatest degree possible.
Tomorrow, we meet with the Doctors at the Kidney Center at Childrens to talk about Julian's blood work and what it all means in practical terms (i.e. when should we plan for dialysis surgery and training, etc.). In the mean time, Stacy will be on the phone with the transplant coordinator at Childrens to see where we are on "the list" and to more closely examine the likelihood of Julian receiving an organ from a living related donor.