From Julian's COTA Journal.
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.
Monday, November 17, 2008
04.29.2008 - Catching Up
From Julian's COTA Journal.
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 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.
04.20.2008 - Waiting and Praying
From Julian's COTA Journal.
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.
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
04.12.2008 - Dialysis Day 2
From Julian's COTA Journal.
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 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.
04.11.2008 - Post-Surgery Update
From Julian's COTA Journal.
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.
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.
04.10.2008 - Surgery Update
From Julian's COTA Journal.
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.
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.
04.10.2008 - Pre-Surgery Update
From Julian's COTA Journal.
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 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.
04.09.2008 - Pre-Operation
From Julian's COTA Journal.
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.
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.
04.04.2008 - Update From Stacy
Originally sent as an email from Stacy
*****
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.
Stacy
*****
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.
Stacy
03.31.2008 - Bladder Surgery
From Julian's COTA Journal.
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.
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.
03.13.2008 - Transplant Update
From Julian's COTA Journal.
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 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.
03.06.2008 - Update
From Julian's COTA Journal.
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.
Good night.
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.
Good night.
01.30.2008 - Progress
From Julian's COTA Journal.
We returned last night from our trip to Palo Alto, CA safe and sound. We had a great time meeting with the transplant team at the Children's Hospital at Stanford, as well as doing some touristy things in San Francisco.
Below is an excerpt from an email that Stacy sent out last night offering a synopsis of the results of our trip.
*****
I just wanted to send a quick update to everyone in my e-mail address book. In a few days Julian will be listed on the Organ Recipient regional list for the Lucile Packard Children's Hospital in Palo Alto. He has been on the Denver Children's Hospital list for a kidney transplant since May of last year, which is almost 9 months, and his time accrued here in Denver will transfer with him to Palo Alto's list. Since children waiting for kidneys in Palo Alto don't typically have to wait even 1 year's time, it is likely Julian will be "up" for a kidney in the next few weeks-to-months.
We do have a friend who is being tested as a potential living donor, which is what is preferred in terms of prolonging the life of the transplanted kidney, so we still have hope for that option. But if she is not a match, or if her blood reacts "positively" (which isn't good) with Julian's, then we will be reconciled to receiving a cadaveric kidney and will know that it is God's best for Julian.
What this means is that Julian and I (Stacy) will be moving in to the Ronald McDonald House at Stanford in a couple of weeks, to wait for his kidney. After his transplant we will need to remain there an additional 100 days for their follow-up protocol. Dave will remain in Colorado, and come see us on weekends when he can. When the transplant occurs, he will take 2 weeks off to come be with us, but then will need to get back to work. Please pray that we weather the separation from him well!
The reason we are transferring his name to the Palo Alto list is that Stanford does a "Steroid-Free Transplant Protocol" which would keep Julian from having to be on Steroids for the rest of his life as part of his anti-rejection immune suppressant medication regimen. Denver uses Steroids. We will continue to be listed on Denver's list, but only as a back-up in case he is disqualified from Palo Alto for some reason.
Thank you all for continuing to lift our family up in prayer, and if any of you would like to donate a tax-deductible donation on behalf of the expenses associated with Julian's transplant, you can do so at 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.
Thanks again!
Stacy Phillips
*****
Then, as if that weren't enough, this morning, we checked Julian in for surgery at Denver Children's Hospital to have his peritoneal dialysis catheter removed. All went well, and when Julian revived from anesthetic, the first words out of his mouth were "get down, run around."
An interesting note: when we returned to Children's to resume dialysis training in early January, we prayed that if for any reason, dialysis was not the correct track to pursue for Julian, that He would make it physically impossible for the dialysis to work. On the day we returned and hooked him up to the machine, for reasons unknown, the dialysis physically would not work. Not long after, we decided to suspend training until we could determine whether or not Julian really needed the dialysis at all (determined through his blood work). Today, after the surgery, the surgeon came to let us know just how Julian was doing. When we asked him what happened to the catheter, he explained that it was completely clogged with what he described as an unidentifiable substance: it was the consistency of fibrin but the wrong color; it was the color of the fatty omentum, but the wrong consistency. After all his experience in surgery, he was unable to explain what the substance was.
Coincidence?
That's all for tonight - thanks for checking in.
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.
Thanks again!
Stacy Phillips
*****
Then, as if that weren't enough, this morning, we checked Julian in for surgery at Denver Children's Hospital to have his peritoneal dialysis catheter removed. All went well, and when Julian revived from anesthetic, the first words out of his mouth were "get down, run around."
An interesting note: when we returned to Children's to resume dialysis training in early January, we prayed that if for any reason, dialysis was not the correct track to pursue for Julian, that He would make it physically impossible for the dialysis to work. On the day we returned and hooked him up to the machine, for reasons unknown, the dialysis physically would not work. Not long after, we decided to suspend training until we could determine whether or not Julian really needed the dialysis at all (determined through his blood work). Today, after the surgery, the surgeon came to let us know just how Julian was doing. When we asked him what happened to the catheter, he explained that it was completely clogged with what he described as an unidentifiable substance: it was the consistency of fibrin but the wrong color; it was the color of the fatty omentum, but the wrong consistency. After all his experience in surgery, he was unable to explain what the substance was.
Coincidence?
That's all for tonight - thanks for checking in.
01.25.2008 - Update
From Julian's COTA Journal.
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.
Busy week.
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.
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.
Busy week.
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.
01.16.2008 - Many Thanks
From Julian's COTA Journal.
Hello everyone. We wanted to express our thanks to those of you who have made donations toward Julian's care. COTA doesn't tell us who donated or how much - rules are rules - but we submitted our first round of expenses last week, and they did tell us that the current account balance was within a couple hundred dollars of the total we submitted. So, suffice it to say, the need is being met.
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.
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.
01.09.2008 - Dialysis Update
From Julian's COTA Journal.
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...
yyy
hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhnnnnnnnnnnnnnnnnnnnnnnnnnnnhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
Okay, that's enough for now. Good night, from all of us.
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...
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hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhnnnnnnnnnnnnnnnnnnnnnnnnnnnhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
Okay, that's enough for now. Good night, from all of us.
12.23.2007 - Change in Plans
From Julian's COTA Journal.
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!
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!
12.11.2007 - Dialysis Training
From Julian's COTA Journal.
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...
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...
12.02.2007 - Healing
From Julian's COTA Journal.
Today we went on a short outing to the Stone Cup, a local coffee shop here in Lyons. Julian seems to have more and more energy, and seems to be less and less affected by the pain of his surgery. He's still tender when we have to lift him up, but we take it nice and slow. Don't want to over stress that wound as it heals. But by and large, he seems to be returning to his normal, sunny self.
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...
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...
12.01.2007 - Home Again
From Julian's COTA Journal.
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.
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.
11.28.2007 - Dialysis Surgery
From Julian's COTA Journal.
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.
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.
11.06.2007 - Dialysis
From Julian's COTA Journal.
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.
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.
10.20.2007 - Boston in the Fall
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.
08.17.2007 - Reprieve
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.
08.08.2007 - Dialysis Update
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.
Stay tuned.
Tuesday, July 31, 2007
Going Private
Hello everyone. If you're viewing this page, it's because you've been invited. As you may be aware, Julian has a new page at www.cotaforjulianp.com, in order to help raise funds for his pending kidney transplant. As part of our agreement with COTA, we've had to disable this blog, as well as his site at www.julianxane.com, which I've changed to a URL forwarding page, automatically redirecting visitors to the COTA site. Feel free to share the new addresses with those you know. We'll post blog entries, photos, etc. on the COTA website soon.
Saturday, July 14, 2007
Vocabulary II
Julian has already noticed that some of our most important pursuits involve objects with screens and buttons - computers, phones, ipods, calculators, etc. He loves to press buttons and see what effect his action has. This can be particularly exciting if he happens to have possession of a phone. No inadvertent 9-1-1 calls yet, thankfully, but we think it may be merely a matter of time before local authorities show up at the house in response to one of his calls. Can't wait.
Anyway, today's topic is...
Toys & Tech
pwess’-uh a but’-ton = "press the button" - that which absolutely must be done when a button is discovered, whether or not it is connected to a corresponding screen. As Julian has discovered, buttons pressed in one location often have a corresponding effect in another. Turning the TV on and off has proved to be endlessly entertaining.
tee'-fee' = "TV"
a-poot’-tah = "computer" - endlessly powerful devices, and apparently very important, as mom and dad spend a lot of time in front of them, whether at home or at the office.
guf’-fa = "camera" - Julian is quite familiar with the working end of the camera, but now that he's discovered that there is a screen and several buttons on the other side, he is determined to figure out how it all works.
seh’-fun = "cell phone" - again, endlessly entertaining, especially when he manages to get it to talk to him in one of its many voices, some which sound suspiciously like some of the people he knows.
uh’-pod = "ipod" - only makes noise when the wires are plugged in, but a very colorful and playful interface nonetheless.
too’ a lon’ = "turn it on" - once the power button is located, hours of fun can be had when this is used repeatedly and in rapid succession with...
too’ a loff’ = "turn it off"
Interestingly, at one of Julian's recent physical therapy evaluations, his therapist and other evaluators were impressed with his cognitive development. They were specifically struck by two things:
First, they were impressed with the fact that objects such as puzzles held his attention for extended periods of time (he loves to figure things out). We're pretty sure this is a genetic predisposition, as all of the living male members of his bloodline have a compulsion to understand how "it" (whatever "it" is - a computer program, a machine, a car, a building, an economic system, etc.) works. When I was a kid, my dad gave me a book called The Way Things Work, which had schematic diagrams for everything from juke boxes to jet engines. I loved it! Julian already displays some similar curiosities, and we're only too happy to help him explore and understand his world.
Second, he knows all of his letters and numbers by sight. One of our favorite after-work activities is having him sit on my lap in front of the computer keyboard with a fresh Word document open. I'll set the font to 72pt bold, and he'll sit there and play on the keyboard, watching the letters pop up on the screen. I'll quiz him as we go along, asking which letters he's keying in, or asking him to find specific letters. Sometimes he just likes the way it looks when he holds a button down, and row after row of GGGGGGGGGGGGG streams across the screen. Who didn't like that when they were a kid?
All in all, we're happy that he's doing so well, and seems to be so pleasantly disposed. At my work, he's been dubbed "Little Mister Sunshine" or "Mister Happy." His third birthday is looming - just three more months (!) - and so far the 'terrible twos' haven't been so terrible. Even when he's cranky, he's still pretty darn sweet!
Anyway, today's topic is...
Toys & Tech
pwess’-uh a but’-ton = "press the button" - that which absolutely must be done when a button is discovered, whether or not it is connected to a corresponding screen. As Julian has discovered, buttons pressed in one location often have a corresponding effect in another. Turning the TV on and off has proved to be endlessly entertaining.
tee'-fee' = "TV"
a-poot’-tah = "computer" - endlessly powerful devices, and apparently very important, as mom and dad spend a lot of time in front of them, whether at home or at the office.
guf’-fa = "camera" - Julian is quite familiar with the working end of the camera, but now that he's discovered that there is a screen and several buttons on the other side, he is determined to figure out how it all works.
seh’-fun = "cell phone" - again, endlessly entertaining, especially when he manages to get it to talk to him in one of its many voices, some which sound suspiciously like some of the people he knows.
uh’-pod = "ipod" - only makes noise when the wires are plugged in, but a very colorful and playful interface nonetheless.
too’ a lon’ = "turn it on" - once the power button is located, hours of fun can be had when this is used repeatedly and in rapid succession with...
too’ a loff’ = "turn it off"
Interestingly, at one of Julian's recent physical therapy evaluations, his therapist and other evaluators were impressed with his cognitive development. They were specifically struck by two things:First, they were impressed with the fact that objects such as puzzles held his attention for extended periods of time (he loves to figure things out). We're pretty sure this is a genetic predisposition, as all of the living male members of his bloodline have a compulsion to understand how "it" (whatever "it" is - a computer program, a machine, a car, a building, an economic system, etc.) works. When I was a kid, my dad gave me a book called The Way Things Work, which had schematic diagrams for everything from juke boxes to jet engines. I loved it! Julian already displays some similar curiosities, and we're only too happy to help him explore and understand his world.
Second, he knows all of his letters and numbers by sight. One of our favorite after-work activities is having him sit on my lap in front of the computer keyboard with a fresh Word document open. I'll set the font to 72pt bold, and he'll sit there and play on the keyboard, watching the letters pop up on the screen. I'll quiz him as we go along, asking which letters he's keying in, or asking him to find specific letters. Sometimes he just likes the way it looks when he holds a button down, and row after row of GGGGGGGGGGGGG streams across the screen. Who didn't like that when they were a kid?
All in all, we're happy that he's doing so well, and seems to be so pleasantly disposed. At my work, he's been dubbed "Little Mister Sunshine" or "Mister Happy." His third birthday is looming - just three more months (!) - and so far the 'terrible twos' haven't been so terrible. Even when he's cranky, he's still pretty darn sweet!
Wednesday, July 11, 2007
Vocabulary
Greetings all! All's well here in Colorado, although Julian spiked a fever last night. As such, I've taken the morning off.As long as I'm here, I thought I'd post some of Julian's burgeoning vocabulary - "baby words" if you will. He's been talking in sentences for quite some time now, but as time goes by, more and more of it is understandable as English! Here's a sampling of some of his current utterances. Today's category...
Food & Fun
puh-lay’ = "play"
wun’ a-woun’ ow-swoid’ = "run around outside" - his very favorite activity!
slot’-tet -or- slad'-ded = "salad"
kwak’-keurs = "crackers"
bo-wed’ = "bread"
a sweem’-in a pool’ = "swim at the pool" - something new for Julian, which he enjoys a lot.
weev’-veur = "river" - where we go on walks.
woks = "rocks" - what we throw in the river.
pa’-tah = "pasta" - usually uttered in a hushed whisper, as if in reverence.
sik’-ken = "chicken" - meant to be served with pasta.
bik = "bisque"
wal’-leur = "water" - to be served with ice.
fote’ it = "hold it" - as in "I want to hold it!"
Stay tuned - we'll post more soon.
Thursday, May 24, 2007
Refiner's Fire
There was a group of women in a Bible study on the book of Malachi. As they were studying chapter three, they came across verse three, which says: "He will sit as a refiner and purifier of silver. "
This verse puzzled the women and they wondered what this statement meant about the character and nature of God.
One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, this woman called up a silversmith and made an appointment to watch him at work.
She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest, so as to burn away all the impurities.
The woman thought about God holding us in such a hot spot -- then she thought again about the verse that says, "He sits as a refiner and purifier of silver."
She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he also had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.
The woman was silent for a moment. Then she asked the silversmith, how do you know when the silver is fully refined?
He smiled at her and answered, "Oh that's easy -- when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image -- in you.
Be blessed!
This verse puzzled the women and they wondered what this statement meant about the character and nature of God.
One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, this woman called up a silversmith and made an appointment to watch him at work.
She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest, so as to burn away all the impurities.
The woman thought about God holding us in such a hot spot -- then she thought again about the verse that says, "He sits as a refiner and purifier of silver."
She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he also had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.
The woman was silent for a moment. Then she asked the silversmith, how do you know when the silver is fully refined?
He smiled at her and answered, "Oh that's easy -- when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image -- in you.
Be blessed!
Wednesday, May 23, 2007
Woah!
Well, Julian is now officially on the list for a kidney. There was some miscommunication on the hospital end, meaning that I was told by the Transplant Coordinator that works with me that Julian WAS on the list in March, when he WASN'T. She thought he was, but apparently he had not been given approval from the financial department yet, because the financial department didn't know he wanted to be ON the list. Also they were trying to figure out the insurance situation, and we have come to the conclusion that Julian's insurance will NOT cover most of the expenses for the Donor's surgery, whether that donor be a live donor or a cadaveric kidney.
I am getting a packet of information from COTA this week, which is the Children's Organ Transplant Association. They help families coordinate with their communities to help raise money that can be used for transplant-related expenses. It is a non-profit, so any monies donated are tax-deductable. I will hopefully be getting something concrete in place in the next couple weeks so we can start fund-raising for Julian.
If it is a live-donor situation, our costs, no including the testing costs to see if the donor is a viable match, can be from 40-50K (or more if there are any complications). If it is a cadaveric kidney, the operation to remove the kidney and transport it and test it against Julian's tissue/blood type will cost 20-30K. And those are just the initial costs. If the kidney is rejected and further costs are associated with removing the kidney, Julian only has a 1 Million Dollar lifetime transplant maximum on medical expenses that ARE covered by his insurance....so we will need all the help and prayers we can get.
I am not complaining about our health care system, it is the best in the world. And we will work hard to get Julian the best care in the world. I can't even imagine what we would have to go through if we lived in England or Canada. I shudder at the thought.
Thank you for checking in to the update!
I am getting a packet of information from COTA this week, which is the Children's Organ Transplant Association. They help families coordinate with their communities to help raise money that can be used for transplant-related expenses. It is a non-profit, so any monies donated are tax-deductable. I will hopefully be getting something concrete in place in the next couple weeks so we can start fund-raising for Julian.
If it is a live-donor situation, our costs, no including the testing costs to see if the donor is a viable match, can be from 40-50K (or more if there are any complications). If it is a cadaveric kidney, the operation to remove the kidney and transport it and test it against Julian's tissue/blood type will cost 20-30K. And those are just the initial costs. If the kidney is rejected and further costs are associated with removing the kidney, Julian only has a 1 Million Dollar lifetime transplant maximum on medical expenses that ARE covered by his insurance....so we will need all the help and prayers we can get.
I am not complaining about our health care system, it is the best in the world. And we will work hard to get Julian the best care in the world. I can't even imagine what we would have to go through if we lived in England or Canada. I shudder at the thought.
Thank you for checking in to the update!
Wednesday, May 02, 2007
May 2nd Update
Today is Dave's birthday, Happy Birthday Dave! We are all going to celebrate at lunch today at Q'doba. My first suprise is that I'll clean the van, and have the oil changed. Later today I'll do an overhaul on our house while Julian is sleeping. It's the small things!
Julian is doing very well. They've moved his labs to about every two weeks, but he still seems pretty stable. Therefore, he is not on Dialysis yet. We are still hoping for a match with a live donor, and are still proceeding down that road as we wait for a "cadaveric kidney" from the list. I found out definitively yesterday that Julian's health insurance, Blue Cross/Blue Shield, will not pay for any donor testing. The blood tests are 2K a pop, and we've already had Dave tested. We've decided that if any non-relatives want to be tested we are asking them to raise the money for the blood test on Julian's behalf, because we just can't afford it on our own.
Meanwhile we also found out that insurance will only pay 10K toward the live-donor's operation. It's about a 50K operation, so that leaves the balance as our responsibility. We've come to terms that it is what it is, and of course I will be appealing every decision of the insurance, but meanwhile we are coming up with ideas on how to offset the costs. One of them is that I've just become an Arbonne Consultant. Hopefully over time this will give us an increased income, and we will be able to set aside money so that we have it in the bank for when he'll need a new transplant (15 years or so). That way we keep our options open, as a live-donor kidney is a much better kidney to transplant than a cadaveric one. It works better and lasts longer and has less chance of rejection. Secondly, a friend of mine in Estes Park recommended that we organize some kind of 5K Benefit for Julian. I think that's a great idea too. If any of the people being tested come back a match, I will get right on that.
He is so sweet. He is learning new words every day, and saying them. He knows all his numbers up to ten, and all his letters. He can point to them and say them. What a doll! He is an outdoor boy, and loves to go adventuring around our "yard" (if you can call 3 acres a "yard"...to him it's a whole new world!).
Thank you for your continued prayers!
Take care,
Stacy
Julian is doing very well. They've moved his labs to about every two weeks, but he still seems pretty stable. Therefore, he is not on Dialysis yet. We are still hoping for a match with a live donor, and are still proceeding down that road as we wait for a "cadaveric kidney" from the list. I found out definitively yesterday that Julian's health insurance, Blue Cross/Blue Shield, will not pay for any donor testing. The blood tests are 2K a pop, and we've already had Dave tested. We've decided that if any non-relatives want to be tested we are asking them to raise the money for the blood test on Julian's behalf, because we just can't afford it on our own.
Meanwhile we also found out that insurance will only pay 10K toward the live-donor's operation. It's about a 50K operation, so that leaves the balance as our responsibility. We've come to terms that it is what it is, and of course I will be appealing every decision of the insurance, but meanwhile we are coming up with ideas on how to offset the costs. One of them is that I've just become an Arbonne Consultant. Hopefully over time this will give us an increased income, and we will be able to set aside money so that we have it in the bank for when he'll need a new transplant (15 years or so). That way we keep our options open, as a live-donor kidney is a much better kidney to transplant than a cadaveric one. It works better and lasts longer and has less chance of rejection. Secondly, a friend of mine in Estes Park recommended that we organize some kind of 5K Benefit for Julian. I think that's a great idea too. If any of the people being tested come back a match, I will get right on that.
He is so sweet. He is learning new words every day, and saying them. He knows all his numbers up to ten, and all his letters. He can point to them and say them. What a doll! He is an outdoor boy, and loves to go adventuring around our "yard" (if you can call 3 acres a "yard"...to him it's a whole new world!).
Thank you for your continued prayers!
Take care,
Stacy
Saturday, March 31, 2007
Saturday March 31
It's been 10 days since the last update, and we've packed lots in to them. On Monday, Julian went in to have 4 cavities filled. Sounds like no big deal, right? But being so little, the surgery has to be on an out-patient basis with general anesthesia at Children's Hospital! So, at 5:30 a.m. we packed him into the car with us and our coffee (I love coffee!) and headed out. It's an hour's drive to the hospital, so we got there around 6:30, checked him in, and his surgery was at 8:30. It was pushed until 9:00 because of the special formula IV he needed to have, one without potassium in it. When all was said and done, he had 7 cavities filled. You heard me. 7 cavities. No teeth pulled, however, and a thorough cleaning. His teeth are bright and shiny now, and SEALED! Unfortunately he doesn't have 3 of his molars yet...or they could have sealed those too.
He should be good to go for a year or so! It was necessary that we get all his dental work done prior to him being listed on the Kidney Recipient list. He has one more test and I have to complete a social evaluation with a social worker and that all happens next Thursday. He will then be on the list officially.
He won't be able to receive a transplant for another few weeks, however, because of the live vaccine MMR-V we gave him a week and a half ago. You need to wait 1 month after a live vaccine before giving anyone immune-suppressant drugs, otherwise they may develop the disease that they were vaccinated against because they were just exposed to a live version of it in the vaccine.
On another note, my mom is not doing well at all, and so we are all going to Phoenix for Easter. Julian and I will stay for a week, and Dave will stay just for Easter weekend. Since Julian will have no more tests, and be unable to receive a kidney anyway for a couple more weeks, we can travel with him. Technically they say you can travel anyway, even when you are actively on the list, but we don't want to do that because what happens if we are in Phoenix and a perfect match comes in for him? We have to either fly back within a couple hours, which is not always possible, or have the transplant in Phoenix. And since the surgical transplant team we want to use is in Denver, that seals the deal for us. We stay in Colorado until he gets his kidney.
My mom has cancer, metastatic breast cancer which spread to her bones and her brain. So far, after the re-diagnosis (she had breast cancer and was "clear" for a couple years...not really, actually, but they thought she was!) she has been on different regimens of Chemotherapy to manage the growth. This last Chemotherapy really took a toll on her body, and she is now not strong enough to continue the regimen. She has missed the last two weeks worth, which means the cancer has the opportunity to grow again and will. She has been in the hospital twice in the last 2 weeks, and is just not doing very well.
Thanks for your thoughts and prayers.
He should be good to go for a year or so! It was necessary that we get all his dental work done prior to him being listed on the Kidney Recipient list. He has one more test and I have to complete a social evaluation with a social worker and that all happens next Thursday. He will then be on the list officially.
He won't be able to receive a transplant for another few weeks, however, because of the live vaccine MMR-V we gave him a week and a half ago. You need to wait 1 month after a live vaccine before giving anyone immune-suppressant drugs, otherwise they may develop the disease that they were vaccinated against because they were just exposed to a live version of it in the vaccine.
On another note, my mom is not doing well at all, and so we are all going to Phoenix for Easter. Julian and I will stay for a week, and Dave will stay just for Easter weekend. Since Julian will have no more tests, and be unable to receive a kidney anyway for a couple more weeks, we can travel with him. Technically they say you can travel anyway, even when you are actively on the list, but we don't want to do that because what happens if we are in Phoenix and a perfect match comes in for him? We have to either fly back within a couple hours, which is not always possible, or have the transplant in Phoenix. And since the surgical transplant team we want to use is in Denver, that seals the deal for us. We stay in Colorado until he gets his kidney.
My mom has cancer, metastatic breast cancer which spread to her bones and her brain. So far, after the re-diagnosis (she had breast cancer and was "clear" for a couple years...not really, actually, but they thought she was!) she has been on different regimens of Chemotherapy to manage the growth. This last Chemotherapy really took a toll on her body, and she is now not strong enough to continue the regimen. She has missed the last two weeks worth, which means the cancer has the opportunity to grow again and will. She has been in the hospital twice in the last 2 weeks, and is just not doing very well.
Thanks for your thoughts and prayers.
Tuesday, March 20, 2007
Wow! Busy Week Ahead
Hello all, this is Stacy. Julian has a busy week ahead. First of all, yesterday I received a call from his kidney nurse at the Children's Hospital, it looks like they want us in asap to talk about dialysis again. Seems that because Dave is not a match they are thinking Julian will be on the transplant list the better part of a year (or longer) and so they'd like to start him on Dialysis. We have more questions, and we can ask the Doctor when we go in a week from Thursday. Julian has been stable with his kidney function for about a year now, fluctuating from 14% down to 12.5%, where he is right now. But all of his other numbers look good (besides creatinine and BUN), and he is responding to the Epogen shots which is an anti-anemia drug that increased red blood cell production. So I guess I'm not understanding why we can't wait a few more months and give the transplant list a chance!Dave and I agree that if Julian would be better off on Dialysis, ie his lifespan would be extended if he were on dialysis for the next few months to a year, as opposed to not being on Dialysis, we are all for it. That is the question I have for the doc on Thursday. We want to do what is best for Julian, that is for sure. If we can spare him invasive surgery and dialysis every night we would like to do that, so long as his kidneys hold up like they are. Currently we have one more potential donor (you know who you are! Thanks!) going through the process of being tested. If he is not a match, then we will have to wait for a "cadaveric kidney" which could take up to a year or longer to come through.
Yes! So pray that the donor is a match! Thank you!
Now, on to the busy week. Firstly, he has 4 vaccinations tomorrow. He's up to date, but because of his impaired kidney function a couple of the previous vaccines need to be repeated. They test his blood to see what antibodies he has developed, and he's got the mumps antibody but not rubella. So, he gets an MMR tomorrow, as well as a Hepatitis B, a Hepatitis A, a Pneumovax, and a TB test. I'll also take his Epogen shot up there so we don't have to give it to him this week. (Poor guy!) Then on Friday we go up for a psychological evaluation (all of us) which is included in the Transplant evaluation. Then on Monday Julian has mouth surgery at Children's to fill 3 cavities. They'll also take X-rays to see if there are any other cavities not seen in the visual exam that they can fill then as well. This is all in preparation to be put on the list. While Julian is in surgery, I will be attending a socialogical evaluation at the hospital. Once the vaccines, surgery, and evaluations are complete, Julian will be placed on the National Organ Recipient List.
After that happens, we wait. How long we wait is up to the Lord. Could be the next day, although they tell us that is highly unlikely. But God knows. If He wants to give Julian a kidney the next day, he can do it! It won't make sense, it will be a miracle, but He can do it.
So thank you for praying.
Friday, March 09, 2007
Testing, Testing...
Today was a big day for the little guy, the next steps along the road toward a kidney transplant.We started in Cardiology for an EKG. Stickers all over and leads connected to the stickers and hoooolllld still now... jussst a few seconds more... Got it! Whew! Then, on to Radiology for a pair of chest x-rays. More holding still while the big machine overhead buzzes and snaps. Done? OK, off to the lab, where they drew 20ml, the max for someone his size. There's a battery of blood testing to be done, and if all goes well, they got all they needed today.
Trauma trauma trauma! And on top of it all, he missed his nap.
So, no actual appointments today - just lots of poking and prodding. We're optimistic (as always) that everything will run smoothly from here on out, and that Julian will be on "the list" in a few weeks. After that, it's a matter of organ availability.
Thanks to those of you who have expressed even a passing interest in donating a kidney. Seriously, that's huge! And we want you to know how much it means to us, even if you don't end up being "the one."
That's it for now. Enjoy the new pic of Julian at the top of this post. Stacy took it. She's been great at taking portraits of him as he grows and changes. It's amazing to look back at the old photos and see how much he's grown already. Hard to believe.
Wednesday, March 07, 2007
Lyrics to "I Will Lift My Eyes" by Bebo Norman
God, my God, I cry out
Your beloved needs You now
God, be near, calm my fear
And take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You
God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me
‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now
Your beloved needs You now
God, be near, calm my fear
And take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You
God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me
‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now
If Anyone is Interested in Being a Donor...Read This. Thanks!
Hi there everyone! Stacy here! We are moving ahead full steam on getting Julian's Transplant Evaluation completed. This Friday is his EKG and his Ultrasound, as well as more labs! They've got to take 40 ml of blood in total for the tests, so we are trying to space it out so he has 3 or 4 draws over a month and a half or so, since he's still such a little guy and borderline-anemic. We resumed giving him Epogen shots once a week a few weeks ago, and boy does that break my heart! We have to do it ourselves. He is so confused after it's over, that we could stick him like that! I don't know who cries more, him or us! The Epogen is to try to increase his red blood cell production, as he needs to be "tanked up" for the transplant.
Several of you have inquired about what being a kidney donor looks like, so I wanted to post the information on the Blog incase you are interested in looking into it further. Especially any of you with O+ blood!
First off, let me say we would be humbly grateful to any of you who decided to be tested. Once you have decided you would like to be a potential donor, which is an intensely private decision and should be decided by your whole family, the next step is for you to call the Transplant Coordinator at Denver Children's Hospital. You must initiate the first call, and then she will work with you every step of the way. The first test is a simple blood/tissue typing test I believe, which would either give you a green light (ie you are a match) or would rule you out. The Transplant Coordinator's name is Diane Dovel, and her direct phone number is (303)764-8463.
Next, I looked in our manual we were given last week and it contains the following information, verbatim:
"Living donor kidney donation is when a living person donates a kidney to the potential transplant recipient. Live donors must be healthy individuals that have been evaluated and identified as capable of undergoing surgery safely and living a healthy life with only one kidney. These donors are usually genetically related, such as a parent, an adult sibling or child, aunt or uncle, young grandparent, or other close relative (*sidenote from Stacy---they do not NEED to be related they just need to be a perfect match).
Potential live donors will undergo a complete evaluation before a final decision is made. Only those persons who are compatible and have no contraindications will be considered as potential donors. Sometimes people who are interested in being a living donor are not approved because of certain medical and/or psycholosocial circumstances.
Contraindications include (*meaning you'd probably be ruled out if you had the following):
*Significant health history (history of cancer, childhood diseases or other medical problems)
*Surgical history (abdominal surgery scar tissue may complicate nephrectomy)
*Current medical problems (high blood pressure, obesity, diabetes)
*Age (18 years to 55 years)
*Infectious diseases (hepatitis, HIV)
*Anatomy of kidneys (single kidney, multiple arteries)
*Social circumstances (single parent without significant support or extended family)
*Mental health illness (would require current mental health care provider evaluation)
*Alcohol or drug use (significant history of substance abuse)
The transplant team wants to ensure that the kidney donation is a safe and uncomplicated procedure for the donor and the best option for your child. If there is any concern about the safety of the donor, the procedure cannot be done. Being a kidney donor requires a great deal of commitment and responsibility to follow through with the many tests and examinations. The Living Donor Information Section has complete details of the evaluation, surgery and recovery.
The kidney donor must be healthy, and free of kidney disease or any other illness. The evaluation begins when the donor comes to the transplant team and has made the decision to become a live donor. Blood typing is one of the first tests performed to confirm their compatibility with the recipient. If the donor's blood type is compatible with your child's, the donor will then have a complete history physical examination.
It is important that the primary physician is involved when possible, because they are the most familiar with the donor's history and health. During this exam, several tests are performed that involve drawing blood, collecting urine and stool samples and an EKG and chest X-ray are performed. Most of the initial tests are part of the potential donor's annual physical exam. The next phase, and each consecutive phase, is taken only if nothing contraindicated is discovered that can eliminate the individual as a potential donor. When the evaluation is completed, the potential donor will have been screened for any infections, diseases and anypathology of the kidney that would eliminate them as a potential kidney donor.
Once an individual has been accepted as a live donor, the surgery can be scheduled and final preparations are made. The operations are done at the same time at The Children's Hospital. Two perating rooms are reserved and two to three transplant surgeons are scheduled for the day of surgery. The operation to remove the healthy kidney from the donor is called a nephrectomy. It is major surgery, and the surgical technique to remove the kidney and the risks involved will be discussed in detail with the donor prior to the operation. Post-operative
recovery occurs at The Children's Hospital and hospitalization can be up to five days, depending on the type of nephrectomy. Pain management is important allowing the patient to recover more comfortably. Following discharge, an additional 2 to 6 weeks may be necessary for a full recovery.
Your child's insurance, or Medicare, covers surgery expenses and may cover some of the donor evaluation. It is important that the potential donor's insurance company is notified of the indiviual's desire to donate. Any benefits or policies regarding insurance coverage need to
be discussed and understood before the evaluation. Written financial approval and generated referrals in compliance with their insurance policy are the donor's responsibility. Time off from work and cost of living expenses that may occur during the recovery time are the responsibility of the donor and you family. The transplant program is committed to helping your family utilize available resources that can help when addressing these issues.
In summary, the benefits of receiving a kidney from a live donor are
many, and include:
*Scheduling surgery at a convenient time for the donor and recipient
*Improved compatibility with genetically related donor (for example,
increased number of matching antigens with parents and siblings)
*Improved health of the kidney (no trauma related to the cause of
death)
*Decreased ischemia (time kidney is on ice)
*Decreased episodes of acute rejection
*Immediate recovery of kidney function
Disadvantages to live donor transplant are mainly related to the risks of requiring a healthy individual to undergo a medically unnecessary surgical procedure. Any surgical procedure has risks that include anesthesia, risk of bleeding or blood clot formation, wound infection, and the experience of pain."
Several of you have inquired about what being a kidney donor looks like, so I wanted to post the information on the Blog incase you are interested in looking into it further. Especially any of you with O+ blood!
First off, let me say we would be humbly grateful to any of you who decided to be tested. Once you have decided you would like to be a potential donor, which is an intensely private decision and should be decided by your whole family, the next step is for you to call the Transplant Coordinator at Denver Children's Hospital. You must initiate the first call, and then she will work with you every step of the way. The first test is a simple blood/tissue typing test I believe, which would either give you a green light (ie you are a match) or would rule you out. The Transplant Coordinator's name is Diane Dovel, and her direct phone number is (303)764-8463.
Next, I looked in our manual we were given last week and it contains the following information, verbatim:
"Living donor kidney donation is when a living person donates a kidney to the potential transplant recipient. Live donors must be healthy individuals that have been evaluated and identified as capable of undergoing surgery safely and living a healthy life with only one kidney. These donors are usually genetically related, such as a parent, an adult sibling or child, aunt or uncle, young grandparent, or other close relative (*sidenote from Stacy---they do not NEED to be related they just need to be a perfect match).
Potential live donors will undergo a complete evaluation before a final decision is made. Only those persons who are compatible and have no contraindications will be considered as potential donors. Sometimes people who are interested in being a living donor are not approved because of certain medical and/or psycholosocial circumstances.
Contraindications include (*meaning you'd probably be ruled out if you had the following):
*Significant health history (history of cancer, childhood diseases or other medical problems)
*Surgical history (abdominal surgery scar tissue may complicate nephrectomy)
*Current medical problems (high blood pressure, obesity, diabetes)
*Age (18 years to 55 years)
*Infectious diseases (hepatitis, HIV)
*Anatomy of kidneys (single kidney, multiple arteries)
*Social circumstances (single parent without significant support or extended family)
*Mental health illness (would require current mental health care provider evaluation)
*Alcohol or drug use (significant history of substance abuse)
The transplant team wants to ensure that the kidney donation is a safe and uncomplicated procedure for the donor and the best option for your child. If there is any concern about the safety of the donor, the procedure cannot be done. Being a kidney donor requires a great deal of commitment and responsibility to follow through with the many tests and examinations. The Living Donor Information Section has complete details of the evaluation, surgery and recovery.
The kidney donor must be healthy, and free of kidney disease or any other illness. The evaluation begins when the donor comes to the transplant team and has made the decision to become a live donor. Blood typing is one of the first tests performed to confirm their compatibility with the recipient. If the donor's blood type is compatible with your child's, the donor will then have a complete history physical examination.
It is important that the primary physician is involved when possible, because they are the most familiar with the donor's history and health. During this exam, several tests are performed that involve drawing blood, collecting urine and stool samples and an EKG and chest X-ray are performed. Most of the initial tests are part of the potential donor's annual physical exam. The next phase, and each consecutive phase, is taken only if nothing contraindicated is discovered that can eliminate the individual as a potential donor. When the evaluation is completed, the potential donor will have been screened for any infections, diseases and anypathology of the kidney that would eliminate them as a potential kidney donor.
Once an individual has been accepted as a live donor, the surgery can be scheduled and final preparations are made. The operations are done at the same time at The Children's Hospital. Two perating rooms are reserved and two to three transplant surgeons are scheduled for the day of surgery. The operation to remove the healthy kidney from the donor is called a nephrectomy. It is major surgery, and the surgical technique to remove the kidney and the risks involved will be discussed in detail with the donor prior to the operation. Post-operative
recovery occurs at The Children's Hospital and hospitalization can be up to five days, depending on the type of nephrectomy. Pain management is important allowing the patient to recover more comfortably. Following discharge, an additional 2 to 6 weeks may be necessary for a full recovery.
Your child's insurance, or Medicare, covers surgery expenses and may cover some of the donor evaluation. It is important that the potential donor's insurance company is notified of the indiviual's desire to donate. Any benefits or policies regarding insurance coverage need to
be discussed and understood before the evaluation. Written financial approval and generated referrals in compliance with their insurance policy are the donor's responsibility. Time off from work and cost of living expenses that may occur during the recovery time are the responsibility of the donor and you family. The transplant program is committed to helping your family utilize available resources that can help when addressing these issues.
In summary, the benefits of receiving a kidney from a live donor are
many, and include:
*Scheduling surgery at a convenient time for the donor and recipient
*Improved compatibility with genetically related donor (for example,
increased number of matching antigens with parents and siblings)
*Improved health of the kidney (no trauma related to the cause of
death)
*Decreased ischemia (time kidney is on ice)
*Decreased episodes of acute rejection
*Immediate recovery of kidney function
Disadvantages to live donor transplant are mainly related to the risks of requiring a healthy individual to undergo a medically unnecessary surgical procedure. Any surgical procedure has risks that include anesthesia, risk of bleeding or blood clot formation, wound infection, and the experience of pain."
Saturday, March 03, 2007
Update
Stacy and I were at a party last night with a bunch of old friends and co-workers, some of which I hadn't seen in a couple of years. Everyone was asking about Julian, and it occurred to me that we haven't posted an update in a while. So here goes.We had an appointment with Julian's kidney doctors a couple of weeks ago, and everyone is in agreement now that Julian is big enough for a transplant. There are several ways to do it, and some of the doctors had concerns about limiting future modes of treatment if the transplant was performed a certain way. That hurdle has now been cleared, so we're officially on to the next step.
Now we're in the process of getting Julian on "the list." That process involves a considerable amount of testing and paperwork involving us, the hospital, Julian's PCP, and the insurance company - yikes! Getting all these people to talk to each other sometimes seems like a Herculean task, so we've got our hands full. Stacy especially is busy chasing everybody around, making sure everything gets filed and scheduled appropriately.
Julian is waking up from his nap, and Stacy is at the grocery store, so it sounds like it's playtime!
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