SATURDAY, JANUARY 8, 2011
It has been just about 2 weeks since I had a slew of testing done to prepare for the next step. These tests included a MRI w/ contrast (to look at volumetric flow of the liver), EKG, Chest X-Ray, and Lab tests (literally enough blood to almost pass out).
The next phase is happening this upcoming week. I go back for review with the adult Hepatologist, Psychiatrist, Social Worker, and a Independent Living Donor Advocate. Dr. Esquivel (Dylan's transplant surgeon) will also be reviewing all of my work-up with the team and making the final decision on if I'm officially suitable for living donation and can undergo surgery myself.
Another item that is happening while I/Lucile Packard go through the motions is Dylan's Pediatric End Stage Liver Disease (PELD) Score adjustment. The transplant team is going back to UNOS (United Network of Organ Sharing) and asking for exception points on behalf of Dylan. The reason for this is because of how the score is calculated and how it determines individuals scores is not always so cut and dry. The score is based on 5 criteria's:
Age, Weight, Bilirubin, INR, and Albumin
What it doesn't account for is all the "other" side effects that comes with liver disease. This is why Dylan's current PELD score is a -8 (40 being the highest and most urgent based on this system). At first glance one would think that Dylan is not in danger based on his current scoring but if you ask his physicians he's in more critical danger than some of the others whom have higher scores. This is because once you have a bleed, you're more likely to have another, which is why Dylan underwent so many endoscopies for banding of his esophageal varix. Like everything else in life as you fix one thing it can affect another and this held true for this scenario. In order to ensure Dylan had no more bleeds he had to have this banding done but in doing so it adds more pressure down lower, which has added to his cardiac (stomach) varcies; we even questioned it at the time but protocol and survival warrants the need to continue. Now that Dylan has cardiac varcies, which he now has 3 of them, he is in extreme danger of a life threatening bleed. In the doctors own words, "if he was to have a varix bleed in his stomach, we fear we wouldn't be able to stop it in time" and in explaining this detail it was added that just a few weeks ago a child in fact died from that exact circumstance. This is why Dylan case is going back and being presented to UNOS for those exception points as his current score is not reflective of his current state of health. The team informed us that they are asking for Dylan to be listed at a PELD score of 35.
In the meantime I continue to push forward with them to complete my work-up ASAP and getting a date set for our surgeries (thus far it sounds like its going to be mid February). I understand why they wish to do these exception points b/c they don't care to risk 2 lives if they don't have to and if in the rare instance a deceased donor came available during this "check/balance" time, they would take it.
Over the last few weeks I've had a lot of up's/down's and at times its extremely overwhelming, some say "try not to think about it", "relax", "stop stressing"...my only response is: try not to think about the fear you know your kid is going to feel and asks about daily, try not to think about the pain he will be in and how he won't be the same kid for a while, try not to feel what we already know and what we don't know is to come. How can I stop those feelings? How am I suppose to just bury my head in the sand and pretend its not real....SIMPLE I can't, as that's not my life and that's not our scenario.
I just want to move forward with our son's health, even at the risk of my own (no different than how any parent would be). As unprepared physically, financially, and all our items being in order are....I'm mentally ready today, ready for whatever lies ahead and whatever obstacles are going to arise in our paths. My only care at this moment, at this place in time is the health of my family and seeing to it my son has everything every other kid has; and that's just for once to be allowed to be a kid.
Thank you for all your continued support of our family during this rough time.
-Noah
It has been just about 2 weeks since I had a slew of testing done to prepare for the next step. These tests included a MRI w/ contrast (to look at volumetric flow of the liver), EKG, Chest X-Ray, and Lab tests (literally enough blood to almost pass out).
The next phase is happening this upcoming week. I go back for review with the adult Hepatologist, Psychiatrist, Social Worker, and a Independent Living Donor Advocate. Dr. Esquivel (Dylan's transplant surgeon) will also be reviewing all of my work-up with the team and making the final decision on if I'm officially suitable for living donation and can undergo surgery myself.
Another item that is happening while I/Lucile Packard go through the motions is Dylan's Pediatric End Stage Liver Disease (PELD) Score adjustment. The transplant team is going back to UNOS (United Network of Organ Sharing) and asking for exception points on behalf of Dylan. The reason for this is because of how the score is calculated and how it determines individuals scores is not always so cut and dry. The score is based on 5 criteria's:
Age, Weight, Bilirubin, INR, and Albumin
What it doesn't account for is all the "other" side effects that comes with liver disease. This is why Dylan's current PELD score is a -8 (40 being the highest and most urgent based on this system). At first glance one would think that Dylan is not in danger based on his current scoring but if you ask his physicians he's in more critical danger than some of the others whom have higher scores. This is because once you have a bleed, you're more likely to have another, which is why Dylan underwent so many endoscopies for banding of his esophageal varix. Like everything else in life as you fix one thing it can affect another and this held true for this scenario. In order to ensure Dylan had no more bleeds he had to have this banding done but in doing so it adds more pressure down lower, which has added to his cardiac (stomach) varcies; we even questioned it at the time but protocol and survival warrants the need to continue. Now that Dylan has cardiac varcies, which he now has 3 of them, he is in extreme danger of a life threatening bleed. In the doctors own words, "if he was to have a varix bleed in his stomach, we fear we wouldn't be able to stop it in time" and in explaining this detail it was added that just a few weeks ago a child in fact died from that exact circumstance. This is why Dylan case is going back and being presented to UNOS for those exception points as his current score is not reflective of his current state of health. The team informed us that they are asking for Dylan to be listed at a PELD score of 35.
In the meantime I continue to push forward with them to complete my work-up ASAP and getting a date set for our surgeries (thus far it sounds like its going to be mid February). I understand why they wish to do these exception points b/c they don't care to risk 2 lives if they don't have to and if in the rare instance a deceased donor came available during this "check/balance" time, they would take it.
Over the last few weeks I've had a lot of up's/down's and at times its extremely overwhelming, some say "try not to think about it", "relax", "stop stressing"...my only response is: try not to think about the fear you know your kid is going to feel and asks about daily, try not to think about the pain he will be in and how he won't be the same kid for a while, try not to feel what we already know and what we don't know is to come. How can I stop those feelings? How am I suppose to just bury my head in the sand and pretend its not real....SIMPLE I can't, as that's not my life and that's not our scenario.
I just want to move forward with our son's health, even at the risk of my own (no different than how any parent would be). As unprepared physically, financially, and all our items being in order are....I'm mentally ready today, ready for whatever lies ahead and whatever obstacles are going to arise in our paths. My only care at this moment, at this place in time is the health of my family and seeing to it my son has everything every other kid has; and that's just for once to be allowed to be a kid.
Thank you for all your continued support of our family during this rough time.
-Noah
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