29 February 2012
Anyone for pie?
In conjunction with today's Windows 8 Consumer Preview release, I thought some of the more technically-minded readers might appreciate this chart representing the OS profile of our blog's readers. Very nerdy, I know!
28 February 2012
We got our pager!
Yet another step closer to transplant. The transplant coordinators told us that when a heart becomes available, they'll try our phones first, so the pager has lost a bit of its panache. But still--it makes all of this seem more real. For me, it's a bit like the president's red phone in movies.
Eddie is getting his belly back! His pants still need a good hoist every 5 minutes because they just won't stay in place, but his stomach seems to be filling out. Hurrah!
Thanks for the hugs, email, phone calls, games on a Sunday evening, voice mail, rides home from ballet, visits to drop off a little something for Eddie, lunchtime pep talks, cards sent to my kids, afternoons away for my careworn older children, so many other kinds of help and offers of help...there are some pretty grim moments I face every day and what you do has immediate effects. I'd saved that frozen shepherd's pie for a rainy day when I'd have to choose between something like getting laundry done and making dinner, and it really comforted us tonight. Thank you, I'll find out who you are someday. I'm getting lots of great ideas for when I'm back in the helping saddle again, you are all such great examples to me!
Eddie is getting his belly back! His pants still need a good hoist every 5 minutes because they just won't stay in place, but his stomach seems to be filling out. Hurrah!
Thanks for the hugs, email, phone calls, games on a Sunday evening, voice mail, rides home from ballet, visits to drop off a little something for Eddie, lunchtime pep talks, cards sent to my kids, afternoons away for my careworn older children, so many other kinds of help and offers of help...there are some pretty grim moments I face every day and what you do has immediate effects. I'd saved that frozen shepherd's pie for a rainy day when I'd have to choose between something like getting laundry done and making dinner, and it really comforted us tonight. Thank you, I'll find out who you are someday. I'm getting lots of great ideas for when I'm back in the helping saddle again, you are all such great examples to me!
26 February 2012
Request :-)
No news really, just a request. John and I are putting final touches on our plans for when Eddie is in the hospital for his transplant. Many of you have offered different kinds of help over the past weeks. We've been so grateful for all the love, kind thoughts, good intentions, and help of all kinds you have given our family in this hard time. It has made all the difference! Now, as we plan for the transplant, not knowing when exactly that will happen, we're beginning to match possible needs with willing helpers. I feel like my mind walked out the door with the cardiologist who told us Eddie needed a transplant. So here's the request: If you've offered help in the past or would like to now, could you remind me what it is that you're willing to do? Just drop me or John an email...and forgive me for not keeping a list! :-)
22 February 2012
Celebrating Over Pizza (and Ice Cream)!
The family took a break yesterday to celebrate Eddie's listing with our friends at Frankie's. They were kind enough to provide Eddie with some much needed fat content, and I won't deny that the rest of the family helped clean the plate :-)
21 February 2012
Making it Real
Quick update. Just got off the phone with the hospital and it's now official . . . Eddie is on the transplant waitlist as status 1a, by exception (read sections 3.7.3, 3.7.4, and 3.7.5 here if you're interested in the arcane details of organ allocation and status determination). UNOS will hold a conference call with our doctors two weeks from today to review the exception details (hypertrophic condition and aborted sudden cardiac death episode), but no one believes they will challenge.
So now the wait begins . . .
Thanks to everyone for your continued thoughts, prayers, flowers, treats, meals, kind words, hugs, visits, childcare offers, rides . . . the list only continues to expand and your creativity seems to know no bounds.
We love you!
So now the wait begins . . .
Thanks to everyone for your continued thoughts, prayers, flowers, treats, meals, kind words, hugs, visits, childcare offers, rides . . . the list only continues to expand and your creativity seems to know no bounds.
We love you!
17 February 2012
Another ECHO and Waitlist Status
Today's appointment went well and Eddie's ECHO showed no signficant changes from his last. Dr. Law did have Eddie get a couple chest x-rays since he has had a cough and his lungs seemed a little wet, but everything tested negative for pneumonia. She did slightly increase his Lasix (furosemide) dosage to combat the extra fluid he may be carrying around in his lungs, but nothing to be concerned about.
[Deleted video . . . ]
Based on our conversations today, it appears the selection committee will recommend Eddie be added to the UNOS waitlist as a status 1a. This is great news since that is the highest priority possible, with average wait times between 2-6 months. The rationale our doctors are using for putting Eddie at the top of the list is risk associated with his hypertrophic condition . . . where he has already had a cardiac death event.
[Deleted video . . . ]
Based on our conversations today, it appears the selection committee will recommend Eddie be added to the UNOS waitlist as a status 1a. This is great news since that is the highest priority possible, with average wait times between 2-6 months. The rationale our doctors are using for putting Eddie at the top of the list is risk associated with his hypertrophic condition . . . where he has already had a cardiac death event.
While Eddie is on the waitlist, he will have clinic visits just once a month with an ECHO every other month. Unless he has a significant health change, he shouldn't need any catheterization or biopsy work done prior to transplantation . . . just continue to take his meds and make his check ups.
After transplant, Eddie will most likely be in ICU for a few days and then head to the floor for recovery . Overall, he will probably be in hospital between 2-4 weeks. One of the more exciting bits of news we had today was the amount of training and education Sarah and I will receive before Eddie is released. There is a week or so of hands on training we'll have in the hospital to make sure we can administer Eddie's meds (he'll go home with close to 10 different prescriptions) as well as handle all of his vitals. Who needs Med school?!
All of this culminates in a 24-36 hour sleep-in experience where Sarah and I are required to do everything as if he were at home. The nurses and doctors will be there to make sure we don't do anything horrendously wrong, but talk about pressure! We're just glad our team of doctors/nurses are so focused on Eddie's long-term success. While the surgeries, etc. are complicated, the most important elements of success are really process-oriented . . . making sure everything is done in proper order, double-checked, and then re-verified.
15 February 2012
Transplant Selection Committee
Received word today that the Transplant Selection Committee will meet next Tuesday morning to consider Eddie's case and assign him a priority status (1a, 1b, or 2). At that point, we will need to make the final decision about whether we want to proceed with transplantation. We have an ECHO appointment and Cardiology consultation this Friday so we should have more information about next steps at that point.
Thought this would be a good place to insert a link to an overview of the heart transplant process for those interested in an end-to-end perspective. This document is actually the Stanford Hospital Heart Transplant Patient Manual (SH is another of the top tier transplant hospitals in the country) and the process is pretty consistent with what we've experienced so far.
Some of you have asked about the custom code for Eddie's ICD and whether we are planning for that to happen this week. At this stage, it doesn't appear likely . . . it may be another couple weeks before we can get that squared away. I can't remember if I mentioned in a previous post, but the only risk with the current programming is that the maximum "jolt" Eddie could receive is higher than is recommended for a 3-year old. The good news is that it would only happen if Eddie were to receive six or more impulses from the device . . . which is highly unlikely considering he responded so well to the low-level testing when the surgeons implanted the device.
Thought this would be a good place to insert a link to an overview of the heart transplant process for those interested in an end-to-end perspective. This document is actually the Stanford Hospital Heart Transplant Patient Manual (SH is another of the top tier transplant hospitals in the country) and the process is pretty consistent with what we've experienced so far.
Some of you have asked about the custom code for Eddie's ICD and whether we are planning for that to happen this week. At this stage, it doesn't appear likely . . . it may be another couple weeks before we can get that squared away. I can't remember if I mentioned in a previous post, but the only risk with the current programming is that the maximum "jolt" Eddie could receive is higher than is recommended for a 3-year old. The good news is that it would only happen if Eddie were to receive six or more impulses from the device . . . which is highly unlikely considering he responded so well to the low-level testing when the surgeons implanted the device.
10 February 2012
All Clear
We heard from our cardiologist today confirming that the kids' ECHOs are clear. That is one weight, at least, lifted from our mind.
Overall, it was a good day at the hospital. Thankfully Whitney spent the week with us and helped chaperone the girls through their tests while I was with the boys. And Sarah hung out with Eddie in NeuroPsych while they ran him through a series of IQ and motor skills testing.
Our consult with Nutrition was really about how we can prepare Eddie for surgery . . . gaining another pound or so to be at optimal weight. So we've welcomed whole milk back into our kitchen and we'll be slathering some extra butter on his toast each morning! Not very impressive to Eddie apparently . . . since he fell asleep almost immediately :-)
We had a great meeting with Dr. Cohen (surgery) and he walked us through the organ selection process, surgery, and post-op recovery. We were surprised to hear that he'll begin to get calls from hospitals offering organs almost immediately. It turns out that there are quite a few organ offers, but the real challenge is finding an ideal match. Luckily in Eddie's case, Dr. Cohen can be more selective since his heart isn't in late stage decline. With a defibrillator giving him some level of protection from arrhythmia, he is not in immediate danger since pulmonary hypertension and general organ failure can be monitored over time. If he begins to take a turn for the worse, we'll have to consider accepting a "good enough" offer . . .
Finally, we met with Physical Therapy and Eddie basically got to throw a football, run, jump, kick a soccer ball, balance on one leg, and walk on a balance beam. Needless to say, he loved it! The purpose of the PT consult is to establish a baseline of physical performance so the therapists can help Eddie get back to normal after surgery. Doesn't hurt that he had some fun after a long day.
A big thank you to the wonderful staff at Seattle Children's. Can't say it enough, but we are so fortunate to have them in our backyard. Happy to pay the 520 toll and negotiate Montlake traffic if those are the biggest inconveniences.
Overall, it was a good day at the hospital. Thankfully Whitney spent the week with us and helped chaperone the girls through their tests while I was with the boys. And Sarah hung out with Eddie in NeuroPsych while they ran him through a series of IQ and motor skills testing.
Our consult with Nutrition was really about how we can prepare Eddie for surgery . . . gaining another pound or so to be at optimal weight. So we've welcomed whole milk back into our kitchen and we'll be slathering some extra butter on his toast each morning! Not very impressive to Eddie apparently . . . since he fell asleep almost immediately :-)
We had a great meeting with Dr. Cohen (surgery) and he walked us through the organ selection process, surgery, and post-op recovery. We were surprised to hear that he'll begin to get calls from hospitals offering organs almost immediately. It turns out that there are quite a few organ offers, but the real challenge is finding an ideal match. Luckily in Eddie's case, Dr. Cohen can be more selective since his heart isn't in late stage decline. With a defibrillator giving him some level of protection from arrhythmia, he is not in immediate danger since pulmonary hypertension and general organ failure can be monitored over time. If he begins to take a turn for the worse, we'll have to consider accepting a "good enough" offer . . .
Finally, we met with Physical Therapy and Eddie basically got to throw a football, run, jump, kick a soccer ball, balance on one leg, and walk on a balance beam. Needless to say, he loved it! The purpose of the PT consult is to establish a baseline of physical performance so the therapists can help Eddie get back to normal after surgery. Doesn't hurt that he had some fun after a long day.
A big thank you to the wonderful staff at Seattle Children's. Can't say it enough, but we are so fortunate to have them in our backyard. Happy to pay the 520 toll and negotiate Montlake traffic if those are the biggest inconveniences.
09 February 2012
ECHOs and Evaluations
Tomorrow is a busy day for us at the hospital as we have echocardiograms for each of the kids and Eddie's final transplant consultations. Anyone interested in learning more about how echocardiograms are administered and how they are used should watch this video and read this article . . . pretty good introductions. This is what the kids will be doing tomorrow instead of going to school! (BTW, the ECHO below does not belong to anyone in our family, but it does represent a straight forward example of RCM . . . note the atria (on bottom of screen) ballooning as they clearly face resistance due to the poor relaxation of the ventricles (top).
There is always the possibility that Eddie's RCM diagnosis is hereditary so each of us will be evaluated via face-to-face consultation and echocardiogram. Several doctors have asked if we have any family members that have suffered "sudden death" at a young age . . . and so far, we think the answer is no. Any Harper or Powell relatives out there that know otherwise? Regardless, it's important for each of us to be tested and the kids are on deck first.
There are some specific gene mutations that occasionally characterize familial restrictive cardiomyopathy. It appears that these mutations cause production of defective cardiac proteins which interfere with the heart muscle's ability to relax. This, in turn, means not enough blood enters the left ventricle to be pumped to the rest of the body. And logically, this means blood begins to back up in the left atrium and lungs causing pulmonary hypertension and potential heart failure . . . more or less, a textbook definition of what RCM is. Once again, if any of you are interested in further clinical reading, feel free to browse here or here.
For Eddie, he will be meeting with neuropsychology, nutrition, occupational and physical therapy, and finally, with the lead transplant surgeon himself, Dr. Cohen. Once these evaluations are complete, we are on track to have Eddie added to the transplant waitlist which should be no later than next Friday (2/17).
Hope to post a follow-up entry by tomorrow evening . . .
There is always the possibility that Eddie's RCM diagnosis is hereditary so each of us will be evaluated via face-to-face consultation and echocardiogram. Several doctors have asked if we have any family members that have suffered "sudden death" at a young age . . . and so far, we think the answer is no. Any Harper or Powell relatives out there that know otherwise? Regardless, it's important for each of us to be tested and the kids are on deck first.
There are some specific gene mutations that occasionally characterize familial restrictive cardiomyopathy. It appears that these mutations cause production of defective cardiac proteins which interfere with the heart muscle's ability to relax. This, in turn, means not enough blood enters the left ventricle to be pumped to the rest of the body. And logically, this means blood begins to back up in the left atrium and lungs causing pulmonary hypertension and potential heart failure . . . more or less, a textbook definition of what RCM is. Once again, if any of you are interested in further clinical reading, feel free to browse here or here.
For Eddie, he will be meeting with neuropsychology, nutrition, occupational and physical therapy, and finally, with the lead transplant surgeon himself, Dr. Cohen. Once these evaluations are complete, we are on track to have Eddie added to the transplant waitlist which should be no later than next Friday (2/17).
Hope to post a follow-up entry by tomorrow evening . . .
05 February 2012
We're Home . . . What's Next?
Well, after four days and two surgeries, Eddie is home and resting well. The kids were thrilled to see him, but I think he was more interested in sleeping than hanging out with his siblings :-)
He'll be taking a bunch of meds for the first five days or so but then will taper off. We're excited for the incision to heal and to get our Eddie back without the pain killers!
So what's next? We wish these surgeries marked the end of the battle, but unfortunately, we are only at the very beginning of a long and difficult journey. As with most organ recipients, Eddie will gain a healthy heart at the expense of his immune system. He'll be on immunosuppresants for the rest of his life to avoid organ rejection, and will need ongoing monitoring to ensure that his heart remains healthy and that he doesn't fall victim to all kinds of other nasty illnesses due to his weakened immune system. So this is just the opening round of what's sure to be a long, no-holds-barred, knock-down, drag-out fight.
As it stands now, we'll need to go back to the hospital this week to finish the transplant evaluations with Occupational/Physical Therapy, Neuropsychology, and Cardiology since they weren't able to complete before we left the hospital. Only when those evaluations are complete can they conference and formally submit Eddie's name to the transplant waiting list and assign a priority level. Based on initial conversations with the transplant team, they believe they will be able to list Eddie as a 1a status which is the highest priority. To qualify as 1a, a recipient typically needs to be hospitalized and have a life expectancy of fewer than 14 days without medical intervention, but because of Eddie's "aborted sudden cardiac death" episode a few weeks ago, he may jump to the top.
Once he is waitlisted, there is no guarantee how long it will take to find a matching donor. This is a pretty morbid topic so I'll leave it to you to decide how much you would like to learn about the process. A couple very good sites are the United Network for Organ Sharing and the Organ Procurement and Transplantation Network. Also, for those of you that are statistically-minded, Milliman Research publishes a triennial "U.S. Organ and Tissue Transplant Cost Estimates and Discussion" report with all kinds of interesting information including overall transplant costs, survival rates, and average wait times.
I'll talk about what happens after transplantation another time. I'm exhausted and really trying to stay focused on the here-and-now rather than getting too far ahead of ourselves. We are simply grateful to have another day with our wonderful boy and the joy that we feel now having him with us fortifies us for the difficult road ahead.
Thanks for your many thoughts and prayers on our behalf!
He'll be taking a bunch of meds for the first five days or so but then will taper off. We're excited for the incision to heal and to get our Eddie back without the pain killers!
So what's next? We wish these surgeries marked the end of the battle, but unfortunately, we are only at the very beginning of a long and difficult journey. As with most organ recipients, Eddie will gain a healthy heart at the expense of his immune system. He'll be on immunosuppresants for the rest of his life to avoid organ rejection, and will need ongoing monitoring to ensure that his heart remains healthy and that he doesn't fall victim to all kinds of other nasty illnesses due to his weakened immune system. So this is just the opening round of what's sure to be a long, no-holds-barred, knock-down, drag-out fight.
As it stands now, we'll need to go back to the hospital this week to finish the transplant evaluations with Occupational/Physical Therapy, Neuropsychology, and Cardiology since they weren't able to complete before we left the hospital. Only when those evaluations are complete can they conference and formally submit Eddie's name to the transplant waiting list and assign a priority level. Based on initial conversations with the transplant team, they believe they will be able to list Eddie as a 1a status which is the highest priority. To qualify as 1a, a recipient typically needs to be hospitalized and have a life expectancy of fewer than 14 days without medical intervention, but because of Eddie's "aborted sudden cardiac death" episode a few weeks ago, he may jump to the top.
Once he is waitlisted, there is no guarantee how long it will take to find a matching donor. This is a pretty morbid topic so I'll leave it to you to decide how much you would like to learn about the process. A couple very good sites are the United Network for Organ Sharing and the Organ Procurement and Transplantation Network. Also, for those of you that are statistically-minded, Milliman Research publishes a triennial "U.S. Organ and Tissue Transplant Cost Estimates and Discussion" report with all kinds of interesting information including overall transplant costs, survival rates, and average wait times.
I'll talk about what happens after transplantation another time. I'm exhausted and really trying to stay focused on the here-and-now rather than getting too far ahead of ourselves. We are simply grateful to have another day with our wonderful boy and the joy that we feel now having him with us fortifies us for the difficult road ahead.
Thanks for your many thoughts and prayers on our behalf!
04 February 2012
03 February 2012
Going Red for National Heart Month
How appropriate! I have a feeling we're going to be a lot more aware of these kinds of events soon . . . this is for you Eddie!
Picture This | Going red for National Heart Month | Seattle Times Newspaper
Picture This | Going red for National Heart Month | Seattle Times Newspaper
 |
Marking Heart Health Month, the arches at the Pacific Science
Center at the Seattle Center are lit in red lights with the Space Needle seen
beyond on Thursday night, February 3..
|
The Bionic Boy
Eddie is back in his hospital room and recovering well from surgery this morning. They finished up with him around 2p and his surgeon (Dr. Permut, below) and electrophysiologist both said things went very smoothly.
Hard to believe our little boy has a piece of hardware the size of a pocketwatch in his abdomen, but we're thrilled to have the peace of mind that comes with the ICD. It is standard process to test the device before they close him up and testing went perfectly. For those that are interested in what "testing" looks like, the electrophysiologist basically induces arrhythmia in Eddie's heart and then they let the ICD do its work. Sounds a bit scary and this kind of testing does introduce a cetain level of risk, but it's the only way to verify whether the device is functioning properly. And to top it off, they ran the test twice and Eddie recovered both times. Phew!
One interesting note . . . since these devices are made for adults and there is basically no market for them in pediatric cases, our electrophysiologist and the ICD manufacturer need to petition the FDA for approval to re-program the device to shock at lower maximum values. Again, sounds a bit scary, but the risk that he would receive the full charge is extremely small and they should be able to have him back in a couple weeks to upload the new code. They actually have to enter custom software code since there really is no off-the-shelf solution for what they are doing. Eddie is a true pioneer!
Eddie's incision looks great. We have to be careful for the next few weeks . . . no strenuous activity . . . but otherwise it should heal up ok. Obviously he's not too happy about the pain and discomfort that comes with being opened up, but he's doing amazingly well with only Tylenol. They've approved morphine for him, but so far he hasn't needed it.
We had the Infectious Disease, Anesthesia, and Social Work teams come by today to do their transplant evaluations. I think he passed :-) They're really just asking questions to determine if there are any hidden risk factors before they conference later this week. I know we still need to talk to the Physical Therapy team and a few others before heading home. The great news is that it looks likely that they'll let Eddie go home tomorrow afternoon! We're looking forward to being back home together as an entire family.
If everything goes well, we won't have any more overnight hospital stays until the transplant operation. We'll do our best to enjoy our bionic boy in the meantime!
Hard to believe our little boy has a piece of hardware the size of a pocketwatch in his abdomen, but we're thrilled to have the peace of mind that comes with the ICD. It is standard process to test the device before they close him up and testing went perfectly. For those that are interested in what "testing" looks like, the electrophysiologist basically induces arrhythmia in Eddie's heart and then they let the ICD do its work. Sounds a bit scary and this kind of testing does introduce a cetain level of risk, but it's the only way to verify whether the device is functioning properly. And to top it off, they ran the test twice and Eddie recovered both times. Phew!
One interesting note . . . since these devices are made for adults and there is basically no market for them in pediatric cases, our electrophysiologist and the ICD manufacturer need to petition the FDA for approval to re-program the device to shock at lower maximum values. Again, sounds a bit scary, but the risk that he would receive the full charge is extremely small and they should be able to have him back in a couple weeks to upload the new code. They actually have to enter custom software code since there really is no off-the-shelf solution for what they are doing. Eddie is a true pioneer!
Eddie's incision looks great. We have to be careful for the next few weeks . . . no strenuous activity . . . but otherwise it should heal up ok. Obviously he's not too happy about the pain and discomfort that comes with being opened up, but he's doing amazingly well with only Tylenol. They've approved morphine for him, but so far he hasn't needed it.
We had the Infectious Disease, Anesthesia, and Social Work teams come by today to do their transplant evaluations. I think he passed :-) They're really just asking questions to determine if there are any hidden risk factors before they conference later this week. I know we still need to talk to the Physical Therapy team and a few others before heading home. The great news is that it looks likely that they'll let Eddie go home tomorrow afternoon! We're looking forward to being back home together as an entire family.
If everything goes well, we won't have any more overnight hospital stays until the transplant operation. We'll do our best to enjoy our bionic boy in the meantime!
Big Thanks
This is a thank you post from Sarah . . .
Thank you for your phone calls . . . from near and far. Thanks for leaving me phone messages. Hearing your voice helps me really feel your love for us. I appreciate all the help with my kids. You've helped them before school and picked them up after school. When things have gone longer at the hospital, you've kept them hours longer than you expected . . . and were sweet about it.
Last night, the kids were so happy to see the hearts on our door, they had to stay up and make their own.
We've eaten your delicious cookies. We have some wonderful zucchini(?) bread with us at the hospital right now. The generous supply of sandwiches brought for dinner on Wednesday are still feeding us at the hospital.
Thanks to you, "Liz" is looking forward to her birthday rather than worrying about Eddie in the hospital.
All the cards.
We're in awe that the chaos in our life can be smoothed out so much by you . . . coordinating all of this help is a full-time job and we know none of you have that time to spare. We know you are sacrificing so much time on our behalf.
Eddie loves the pictures and notes that you left on our door. We have many of them with us at the hospital today.
Taking the initiative to come so far to visit us at the hospital so early in this journey . . . and bringing your calm presence.
You made brownies with my kids!
My stove top is still shining.
Sparkly pens.
Because you've offered to teach my lesson at church on Sunday, I can focus my thoughts on Eddie and his recovery.
We now have an accordion file to keep our huge volume of paperwork in order. Such an inspired gift . . . we can't thank you enough.
Your supportive emails have reminded me how much you care and offered help.
I look forward to sharing the bag of Valentine treats with the kids . . . thanks for thinking ahead for us!
Coloring books!
You've even offered to take the Christmas lights off our house (since we're so far behind!!!)
"Sean" Valjean (teddy bear) will soon have a sleeping bag for the hospital :-) Chances are, some of you were responsible for those bears being donated to Duvall Fire . . . never knowing that they would bless the life of our son in such an important way.
You tell us of temple visits and fasting on Eddie's behalf. We feel and appreciate your sacrifices.
Rides, playdates, and nurturing my children.
And the hugs . . .
Everything you've done helps so much . . . moment to moment . . . along this journey. We feel your prayers lifting us. And every kind thought reaches our heart.
Thank you. We love you.
Thank you for your phone calls . . . from near and far. Thanks for leaving me phone messages. Hearing your voice helps me really feel your love for us. I appreciate all the help with my kids. You've helped them before school and picked them up after school. When things have gone longer at the hospital, you've kept them hours longer than you expected . . . and were sweet about it.
Last night, the kids were so happy to see the hearts on our door, they had to stay up and make their own.
We've eaten your delicious cookies. We have some wonderful zucchini(?) bread with us at the hospital right now. The generous supply of sandwiches brought for dinner on Wednesday are still feeding us at the hospital.
Thanks to you, "Liz" is looking forward to her birthday rather than worrying about Eddie in the hospital.
All the cards.
We're in awe that the chaos in our life can be smoothed out so much by you . . . coordinating all of this help is a full-time job and we know none of you have that time to spare. We know you are sacrificing so much time on our behalf.
Eddie loves the pictures and notes that you left on our door. We have many of them with us at the hospital today.
Taking the initiative to come so far to visit us at the hospital so early in this journey . . . and bringing your calm presence.
You made brownies with my kids!
My stove top is still shining.
Sparkly pens.
Because you've offered to teach my lesson at church on Sunday, I can focus my thoughts on Eddie and his recovery.
We now have an accordion file to keep our huge volume of paperwork in order. Such an inspired gift . . . we can't thank you enough.
Your supportive emails have reminded me how much you care and offered help.
I look forward to sharing the bag of Valentine treats with the kids . . . thanks for thinking ahead for us!
Coloring books!
You've even offered to take the Christmas lights off our house (since we're so far behind!!!)
"Sean" Valjean (teddy bear) will soon have a sleeping bag for the hospital :-) Chances are, some of you were responsible for those bears being donated to Duvall Fire . . . never knowing that they would bless the life of our son in such an important way.
You tell us of temple visits and fasting on Eddie's behalf. We feel and appreciate your sacrifices.
Rides, playdates, and nurturing my children.
And the hugs . . .
Everything you've done helps so much . . . moment to moment . . . along this journey. We feel your prayers lifting us. And every kind thought reaches our heart.
Thank you. We love you.
Eddie in Surgery and Happy Friends
Eddie rolled into surgery around 9am and, if all goes well, should be done around 11. Fingers crossed!
On a lighter note, Sarah went home last night and found some surprises on our front porch :-) Thanks to all for your love, smiles, and care.
.jpg)
On a lighter note, Sarah went home last night and found some surprises on our front porch :-) Thanks to all for your love, smiles, and care.
.jpg)
02 February 2012
Recuperation and Drinking from the Fire Hose
So today was a big day for all of us. Eddie was able to rest up a bit and recover from yesterday's procedure while Sarah and I were introduced to the wild and daunting world of organ transplantation. But before I say anything about what happened at the hospital, I want to take a minute to say thank you to EVERYONE who has helped our family over the past few days. I can't bring myself to name names because I know I would miss so many of you, so instead, I'll simply say "You know who you are and we love you!!!" We've have kind visitors, an abundance of loving emails and comments on this blog, families inviting our kids into their homes, and innumerable prayers and well wishes. We are truly blessed to know each of you and hope to return your kindnesses with our own soon.Meanwhile, back at the ranch . . .
Eddie slept great last night and woke up to a breakfast of eggs and oatmeal (Seattle Children's may be a Tier 1 pediatric cardiology hospital, but they could work on their menus a bit). Anyone who knows Eddie won't be surprised to hear he gobbled down the oatmeal. Sarah arrived around 9:30am and walked into a room crammed with what appeared to be well-dressed high school students . . . a quick reminder that we're in a teaching hospital!
Basically, our attending physician, Dr. Law, would pepper the residents with questions about Eddie's condition and they would do their best to mask their fear and give a decent answer. It was fascinating to watch and I have to admit it felt like I had slipped into an old episode of St. Elsewhere.
After rounds, Dr. Permut (Eddie's ICD surgeon) stopped by to discuss implanting an ICD in pediatric patients and its attending risks and benefits. He was also kind enough to bring a couple samples so we could get an idea of what kind of hardware they wanted to put inside our little boy. As you can see from the picture below, these are relatively small devices, but not insignificant when you consider Eddie's size.
We are going to move ahead with the ICD and surgery is scheduled for tomorrow morning at 9:00am. It's hard to think of Eddie going into the OR again so soon after his cath procedure, but we feel much better knowing that the ICD will minimize the risk associated with arrhythmia which was a likely cause for Eddie's previous cardiac fainting episode. The surgery should last about two hours after which Eddie will probably need a couple days to recover. We hope to leave the hospital early next week, but that may depend on . . .
The transplantation evaluations . . .
We had an hour-long conversation with Dr. Law and one of the transplant coordinators about the waitlisting process and some of the realities of heart transplantation. First, Dr. Law informed us that all members of our cardiology team agreed that, considering the results from Eddie's cath, we should kick off the transplant process immediately. Yesterday, there was some discussion about waiting for genetic testing results to come back, but Eddie's pressures were high enough that waiting for another six weeks didn't seem wise.
So the first step in adding Eddie to the transplant waiting list is to complete a battery of evaluations from various teams: cardiology, infectious disease, physical therapy, even social work. The goal of these evaluations is to determine if Eddie is a viable candidate for transplantation. Basically, the thinking is that if Eddie were too sick (or too well), he wouldn't qualify and this could only be teased out by having several different groups assess his condition and then conference to make a final decision.
Happily, Dr. Law felt that Eddie was in a very favorable position at this stage . . . that he could potentially qualify for a high status on the waitlist due to his restrictive diagnosis and pulmonary hypertension, but not sick enough to require hospitalization during the wait period.
We have agreed to proceed with the evaluations since they can perform most of them while Eddie is in the hospital for his ICD surgery. Once the evaluations are complete and a decision is reached about his viability as a candidate, then we are faced with the real decision about actually adding Eddie to the transplant list. It goes without saying that we are taking this process very seriously and will make a final decision when that time comes . . . probably in the next 7-10 days.
Needless to say, Sarah and I are in awe of the patients and their families that have navigated these waters before us. In fact, we are working with the transplant coordinators to connect with families of other young transplant patients and are excited to meet several in the weeks ahead. It sounds like this is a pretty tight knit group and we are anxious to learn from them and come to grips with many of the difficult realities of living with a new heart.
So in all, we continue to feel overwhelmed and intimidated by the volume of information being thrown at us every day. In spite of that, we also feel quietly confident we are headed down the right path and are certain that we'll be guided as we make such important decisions in the coming days. And finally, it was wonderful to see the day end the same way it began . . . with a dose of welcome sun flooding into the room. We love you.
Seattle Sunshine and Work in Progress
Thought this view from Eddie's hospital room was an apt metaphor for today . . . lots of work ahead, but hey, if we can get sun in Seattle, anything is possible.
 |
01 February 2012
A Few Answers, More Questions
Well, Eddie came back to us and we are so thrilled to see him. He is resting now . . . watching a documentary about wolverines before going to sleep :-). Sarah headed home to be with the kids and I'll stay at the hospital tonight.
To the results . . .
This looks to be one of those scenarios where the good news and the bad news are all mixed up together. It certainly does look like Eddie is suffering from restrictive cardiomyopathy (RCM) based on the pressure readings from his heart and lungs. His results were 2-4x higher than normal which is obviously cause for concern, but consistent with the original diagnosis. The scariest findings were in his lungs since non-reactive pulmonary hypertension would disqualify Eddie as a transplant candidate. We do not want to consider our options if transplantation is off the table.
So Dr. Rubio decided to perform a "challenge" to determine whether or not the blood vessels in Eddie's lungs would respond favorably to applied oxygen. Basically, his pulmonary blood pressure dropping in response to oxygen would be a very favorable result and demonstrate sufficient resilience to be considered for a transplant. If the oxygen challenge didn't produce good results, he would conduct another challenge where Eddie would inhale nitric oxide to promote pulmonary dilation. Thankfully, Eddie responded favorably enough to the oxygen that Dr. Rubio didn't bother with the nitric oxide.
So our immediate dose of bad/good news is that our doctors are virtually certain that this is a case of RCM (bad), but that Eddie is very much a viable transplantation candidate (good). Our doctors are also sending blood samples to a lab at Harvard to conduct genetic testing to look for the particular gene mutations that define RCM and hypertrophic cardiomyopathy (HCM). If the results come back positive, then we proceed with absolute certainty about the diagnosis. Regardless of the root cause, however, we have very limited options for treating this condition.
Finally, an obvious concern we have in the intermediate term is how we can prevent Eddie from having another cardiac "event." There is one option we are discussing with the team which would involve inserting an implantable cardioverter-defibrillator (ICD) that would kick start Eddie's heart automatically in case of cardiac arrest. The ICD would be in place until transplantation at which point it would become unnecessary and need to be removed. We still have several questions about this option and will be discussing it in further detail with our doctors tomorrow morning.
So as we go to sleep tonight, we are comforted to know that Eddie is resting peacefully and that he came through his cath procedure well. We have a few more answers and know that transplantation is still a viable option. And finally, we are glad to have options on the table for addressing the very real concern of cardiac episodes in the near future. We'll take any victory, large or small.
More tomorrow . . .
This looks to be one of those scenarios where the good news and the bad news are all mixed up together. It certainly does look like Eddie is suffering from restrictive cardiomyopathy (RCM) based on the pressure readings from his heart and lungs. His results were 2-4x higher than normal which is obviously cause for concern, but consistent with the original diagnosis. The scariest findings were in his lungs since non-reactive pulmonary hypertension would disqualify Eddie as a transplant candidate. We do not want to consider our options if transplantation is off the table.
So Dr. Rubio decided to perform a "challenge" to determine whether or not the blood vessels in Eddie's lungs would respond favorably to applied oxygen. Basically, his pulmonary blood pressure dropping in response to oxygen would be a very favorable result and demonstrate sufficient resilience to be considered for a transplant. If the oxygen challenge didn't produce good results, he would conduct another challenge where Eddie would inhale nitric oxide to promote pulmonary dilation. Thankfully, Eddie responded favorably enough to the oxygen that Dr. Rubio didn't bother with the nitric oxide.
So our immediate dose of bad/good news is that our doctors are virtually certain that this is a case of RCM (bad), but that Eddie is very much a viable transplantation candidate (good). Our doctors are also sending blood samples to a lab at Harvard to conduct genetic testing to look for the particular gene mutations that define RCM and hypertrophic cardiomyopathy (HCM). If the results come back positive, then we proceed with absolute certainty about the diagnosis. Regardless of the root cause, however, we have very limited options for treating this condition.
Finally, an obvious concern we have in the intermediate term is how we can prevent Eddie from having another cardiac "event." There is one option we are discussing with the team which would involve inserting an implantable cardioverter-defibrillator (ICD) that would kick start Eddie's heart automatically in case of cardiac arrest. The ICD would be in place until transplantation at which point it would become unnecessary and need to be removed. We still have several questions about this option and will be discussing it in further detail with our doctors tomorrow morning.
So as we go to sleep tonight, we are comforted to know that Eddie is resting peacefully and that he came through his cath procedure well. We have a few more answers and know that transplantation is still a viable option. And finally, we are glad to have options on the table for addressing the very real concern of cardiac episodes in the near future. We'll take any victory, large or small.
More tomorrow . . .
Out of Cath Lab and Doing Well
Just a brief update to let everyone know that Eddie is out of the cath lab and in the recovery room. We haven't seem him yet, but have had several doctors and nurses tell us he is doing great. We expect him to join us in his room by 5p tonight.
He has been admitted and we will be staying at least through the night. We have preliminary outcomes, but will wait until later tonight to talk about details. In all reality, it appears likely he will be in hospital for a few more days.
So thank you for your thoughts and prayers . . . they make a huge difference!
I've attached a video of Eddie immediately before he went into surgery . . . but after they administered some pre-meds. The anesthesiologist warned they would make him silly, but even we were surprised at how effective they were :-)
Love to all.
He has been admitted and we will be staying at least through the night. We have preliminary outcomes, but will wait until later tonight to talk about details. In all reality, it appears likely he will be in hospital for a few more days.
So thank you for your thoughts and prayers . . . they make a huge difference!
I've attached a video of Eddie immediately before he went into surgery . . . but after they administered some pre-meds. The anesthesiologist warned they would make him silly, but even we were surprised at how effective they were :-)
Love to all.