Hello Dear Family and Friends:
Another milestone as we celebrate Eddie's 2nd heart birthday today. We haven't posted many updates since that beautiful day two years ago, but we are anxious for you to know how he is doing and to see for yourself what he's been up to . . .
Forgive the brevity, but I am exhausted . . . and am only still awake because I'm committed to having this post time stamped on May 2!
And I need to make a special call out to my parents, Jack and Judy Harper, who are celebrating their 50th wedding anniversary today! We love you and hope you guys are having a blast on your trip.
Thanks to everyone for continued thoughts and prayers. Eddie is a miracle, but you are all angels.
The Harpers
2 May 2014
02 May 2014
14 February 2013
Valentine's Day
To all of our friends at Seattle Children's Hospital . . . Happy Valentine's Day! We love you and hope you enjoy seeing the fruits of your labor.
We can't begin to thank you enough for your ongoing attention and care, but the video below is one small gesture . . . a way of celebrating the miracle that is Eddie's life while respecting the monumental challenges we all faced in treating him.
Please share with anyone who knows Eddie and wants to find out what he's been up to since leaving the hospital. The SCH cameos begin at 6:53 :-)
And to all of our family, friends, and Eddie fans, enjoy this ten minute update . . . we've come a long way, but the best is definitely still ahead!
Also including a link directly to YouTube in case that is easier to navigate. If bandwidth allows, be sure to watch in 1080 HD :-)
We love you all!
The Harpers
We can't begin to thank you enough for your ongoing attention and care, but the video below is one small gesture . . . a way of celebrating the miracle that is Eddie's life while respecting the monumental challenges we all faced in treating him.
Please share with anyone who knows Eddie and wants to find out what he's been up to since leaving the hospital. The SCH cameos begin at 6:53 :-)
And to all of our family, friends, and Eddie fans, enjoy this ten minute update . . . we've come a long way, but the best is definitely still ahead!
Also including a link directly to YouTube in case that is easier to navigate. If bandwidth allows, be sure to watch in 1080 HD :-)
We love you all!
The Harpers
25 January 2013
Bedside Manner
It was a year ago yesterday that we were adopted into the Seattle Children's Hospital Cardiology family. On Tuesday, January 24, 2012, we still thought Eddie's condition would be diagnosed by a neurologist rather than a cardiologist, so we walked through the 4th Floor Whale entrance more nervous about Eddie's sleep study scheduled for the next day than his echocardiogram.
Today, we are thankful for Dr. McQuinn, the face we'll always associate with Eddie's diagnosis . . . and we love you for it. You spoke to us kindly, gently, but directly. The 'T' word escaped from your lips only minutes after seeing Eddie's ultrasound . . . which we know must have been tremendously difficult for you. You left the door open a few millimeters for us . . . perhaps the imaging was misleading, you would need to consult with your colleagues before making any formal conclusions.
Why don't you get some lunch, and I'll talk to the Transplant Cardiology team to get their opinion.
Should we schedule another appointment to get your feedback? How long will it take you to get an answer?
Oh . . . no. We'll need to talk this afternoon. Don't go far. We'll give you a pager. And so it began.
We're thinking of you Drs. Kemna and Albers, our first transplant cardiologists, who sat with us that afternoon, speaking to us more with your eyes than with your lips. Will this family make it through the coming months? Do they have any idea what stress, what heartbreak, what pain they will face? I don't know but they were also asking themselves if they were ready to escort another child through months of waiting, fear, and anxiety. Dr. Kemna, do you ever wonder, at moments like these, whether you chose the right profession? Dr. Albers, are you sure you're prepared for a lifetime of broken hearts?
Well, John Donne said "Affliction is a treasure, and scarce any man hath enough of it." I don't know if that gives you any comfort, but it does me. While Proust, a bit more recently, told us that "we are healed of a suffering only by experiencing it in full." I don't know if we've drained our pool of suffering yet, but we have certainly felt a blessed measure of healing at your hands. Do not doubt, as I'm sure you don't, the path you have followed . . . Eddie knows you as angels, and we will always remember that day, in 2012, when your eyes spoke more eloquently than your lips.
Today, we are thankful for Dr. McQuinn, the face we'll always associate with Eddie's diagnosis . . . and we love you for it. You spoke to us kindly, gently, but directly. The 'T' word escaped from your lips only minutes after seeing Eddie's ultrasound . . . which we know must have been tremendously difficult for you. You left the door open a few millimeters for us . . . perhaps the imaging was misleading, you would need to consult with your colleagues before making any formal conclusions.
Why don't you get some lunch, and I'll talk to the Transplant Cardiology team to get their opinion.
Should we schedule another appointment to get your feedback? How long will it take you to get an answer?
Oh . . . no. We'll need to talk this afternoon. Don't go far. We'll give you a pager. And so it began.
We're thinking of you Drs. Kemna and Albers, our first transplant cardiologists, who sat with us that afternoon, speaking to us more with your eyes than with your lips. Will this family make it through the coming months? Do they have any idea what stress, what heartbreak, what pain they will face? I don't know but they were also asking themselves if they were ready to escort another child through months of waiting, fear, and anxiety. Dr. Kemna, do you ever wonder, at moments like these, whether you chose the right profession? Dr. Albers, are you sure you're prepared for a lifetime of broken hearts?
Well, John Donne said "Affliction is a treasure, and scarce any man hath enough of it." I don't know if that gives you any comfort, but it does me. While Proust, a bit more recently, told us that "we are healed of a suffering only by experiencing it in full." I don't know if we've drained our pool of suffering yet, but we have certainly felt a blessed measure of healing at your hands. Do not doubt, as I'm sure you don't, the path you have followed . . . Eddie knows you as angels, and we will always remember that day, in 2012, when your eyes spoke more eloquently than your lips.
10 January 2013
More Anniversary Thoughts and Current Events
So we passed an amazingly poignant anniversary mark
yesterday . . . Eddie collapsed Sunday night, January 8th, last
year. It’s frightening, sobering, and exhilarating to think back to that point
and impossible to believe how much our life has changed in between. A bit eerie
today as I was scrolling through some of my work emails and found the following
to my manager which could compete for understatement of the year:
"FYI, Sarah and I had a scare last night as Eddie, our 3 year old, lost consciousness, stopped breathing, and we couldn't detect a heartbeat. Doctors think it may have been a seizure of some sort, but still need to run more tests...after the battery of CT, EKG, and blood test they ran last night.
"He came home with us in the middle of the night...after he had recovered and after tests they said there was nothing specific they could do if they admitted him. But we have to go back today and will probably need to talk to a neurologist.
"Bottom line, he's ok now, but I may be AWOL for a couple hours this morning as Sarah and I work out next steps."
Two things have been on my mind as we hit the one-year mark. First, everyone should seek out CPR training of some sort . . . even if just watching a few YouTube videos. Eddie suffered what is known as an Aborted Sudden Cardiac Death . . . aborted because we immediately went to work on him with chest compressions. He had no pulse and wasn’t breathing, and while I had never actually administered CPR, I had participated in several training sessions of one sort or another.
According to the American Heart Association, administering CPR immediately after onset of cardiac arrest can increase survival rates by 3x. Unfortunately, only 32% of cardiac arrest victims receive CPR and, even more sadly, only 8% of people who suffer cardiac arrest outside of a hospital survive. And if that isn’t enough reason to learn CPR, then consider the fact that four out of five cardiac arrest episodes occur at home . . . so the life you save will most likely be a child, spouse, parent, or friend.
On a related note, we’ve obviously thought a lot about potential opportunities to help drive awareness of Eddie’s medical condition, organ donation, patient advocacy, etc. If we’re going to be asked to pass through this kind of trial, it would be a shame not to do everything possible to help lighten the burden for others currently struggling through similar circumstances . . . or, looking forward, participate in efforts to minimize the suffering of future generations.
Well, for the past month-and-a-half, our high school freshman has been working twice a week at the University of Washington Medical Center Laboratory in Seattle. He has generously been allowed to participate in important stem cell studies at one of the most highly regarded regenerative medicine labs in the world. His sponsor, Dr. Charles Murry, is a leading researcher in the stem cell biology and regenerative medicine . . . basically looking for a way of helping the heart heal itself which would eventually make surgery and transplantation unnecessary.
If you’re interested in finding out more, your best bet is to ask him directly since Sarah and I are absolutely out of our depth. Have attached a few photos and video of the cells he has been feeding and growing in the lab . . . can you believe this? Yes, these cells are beating! They began life as fetal lung cells and have since been reprogrammed and are now functioning cardiomyocytes, or heart cells.
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Continued thanks to all for thoughts, prayers, and kind words. The magnitude of what has happened to our family still hasn’t sunk in, but there are moments when I watch Eddie sleeping peacefully, or when he dances around the room with the other kids, or sleds down the hill with Sarah, that I honestly feel like I’d go through it all over again . . .
"FYI, Sarah and I had a scare last night as Eddie, our 3 year old, lost consciousness, stopped breathing, and we couldn't detect a heartbeat. Doctors think it may have been a seizure of some sort, but still need to run more tests...after the battery of CT, EKG, and blood test they ran last night.
"He came home with us in the middle of the night...after he had recovered and after tests they said there was nothing specific they could do if they admitted him. But we have to go back today and will probably need to talk to a neurologist.
"Bottom line, he's ok now, but I may be AWOL for a couple hours this morning as Sarah and I work out next steps."
Two things have been on my mind as we hit the one-year mark. First, everyone should seek out CPR training of some sort . . . even if just watching a few YouTube videos. Eddie suffered what is known as an Aborted Sudden Cardiac Death . . . aborted because we immediately went to work on him with chest compressions. He had no pulse and wasn’t breathing, and while I had never actually administered CPR, I had participated in several training sessions of one sort or another.
According to the American Heart Association, administering CPR immediately after onset of cardiac arrest can increase survival rates by 3x. Unfortunately, only 32% of cardiac arrest victims receive CPR and, even more sadly, only 8% of people who suffer cardiac arrest outside of a hospital survive. And if that isn’t enough reason to learn CPR, then consider the fact that four out of five cardiac arrest episodes occur at home . . . so the life you save will most likely be a child, spouse, parent, or friend.
On a related note, we’ve obviously thought a lot about potential opportunities to help drive awareness of Eddie’s medical condition, organ donation, patient advocacy, etc. If we’re going to be asked to pass through this kind of trial, it would be a shame not to do everything possible to help lighten the burden for others currently struggling through similar circumstances . . . or, looking forward, participate in efforts to minimize the suffering of future generations.
Well, for the past month-and-a-half, our high school freshman has been working twice a week at the University of Washington Medical Center Laboratory in Seattle. He has generously been allowed to participate in important stem cell studies at one of the most highly regarded regenerative medicine labs in the world. His sponsor, Dr. Charles Murry, is a leading researcher in the stem cell biology and regenerative medicine . . . basically looking for a way of helping the heart heal itself which would eventually make surgery and transplantation unnecessary.
If you’re interested in finding out more, your best bet is to ask him directly since Sarah and I are absolutely out of our depth. Have attached a few photos and video of the cells he has been feeding and growing in the lab . . . can you believe this? Yes, these cells are beating! They began life as fetal lung cells and have since been reprogrammed and are now functioning cardiomyocytes, or heart cells.
.jpg)
.jpg)
Continued thanks to all for thoughts, prayers, and kind words. The magnitude of what has happened to our family still hasn’t sunk in, but there are moments when I watch Eddie sleeping peacefully, or when he dances around the room with the other kids, or sleds down the hill with Sarah, that I honestly feel like I’d go through it all over again . . .
06 January 2013
Anniversaries
It's been almost a year since this Odyssey began. I am going to bed tonight (the day of the week Eddie collapsed) feeling so grateful, and so happy to have Eddie sleeping soundly down the hall. He is more and more a normal four year old every day, even has started doing flips over the furniture and running into parking lots. We are starting to get our family's life into a more sustainable routine. Even though most of what we all do each day is informed by having Eddie as a part of our family, I think we feel we can breathe a little easier now.
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| A new look for a new year (trying on glasses for fun while Mom chose hers) |
16 October 2012
Home Again and Waiting . . .
Eddie is back home and doing very well. His fever broke early Saturday morning and his potassium levels quickly came back in line. His cardiologists thought one of his meds (Enalapril) may have been a contributing factor to his potassium spike so they've discontinued it permanently. Woo-hoo! One more drug off the list bringing us to six total:
Big thanks again to Eddie's team of cardiologists, surgeons, anesthesiologists, nurses, and coordinators for making a nerve-wracking process manageable. As you can see from the picture, everyone loves Eddie and, for a parent, it's so comforting to see your child taken into the OR in the anesthesiologist's arms rather than on a gurney. Thank you Seattle Childrens!
- Neoral (ciclosporine)
- Cellcept (mycophenolate mofetil)
- Sildenafil
- Magnesium (magonate)
- Bactrim (sulfamethoxazole and trimethoprim)
- Aspirin
Big thanks again to Eddie's team of cardiologists, surgeons, anesthesiologists, nurses, and coordinators for making a nerve-wracking process manageable. As you can see from the picture, everyone loves Eddie and, for a parent, it's so comforting to see your child taken into the OR in the anesthesiologist's arms rather than on a gurney. Thank you Seattle Childrens!
12 October 2012
Postscript
Ok, so one last update before I drift off to sleep. Eddie's fever has broken and his potassium levels are now back to normal (thank you, Lasix). Those are the only things keeping him in the hospital, so the attending fellow just stopped by and asked if we wanted to go home now. Since it is 11:00p, Eddie is fast asleep, and I don't have a car, I figure we'll stay put and get a good night's rest at the hospital :-)
Unfortunately, since the tissue samples from today's biopsy weren't sent to Pathology early enough, we won't have those results until Monday afternoon. Luckily, we don't need to wait here until then since he isn't showing any clinical signs of rejection.
Otherwise, all of his labs look great with levels landing within appropriate ranges.
A bit surreal, but also wonderful, to be back in the hospital and seeing so many familiar faces. Also great to see all of the progress on the new wing . . . can't wait to see our friends in the Cardiac ICU in their new digs next Spring.
Unfortunately, since the tissue samples from today's biopsy weren't sent to Pathology early enough, we won't have those results until Monday afternoon. Luckily, we don't need to wait here until then since he isn't showing any clinical signs of rejection.
Otherwise, all of his labs look great with levels landing within appropriate ranges.
A bit surreal, but also wonderful, to be back in the hospital and seeing so many familiar faces. Also great to see all of the progress on the new wing . . . can't wait to see our friends in the Cardiac ICU in their new digs next Spring.
Post-Op Update
So Eddie came through surgery just fine. As expected, the surgeons had to feed the catheter through the groin since he doesn't have good neck access (Eddie, not the surgeon), but there were no subsequent complications.
However, during the course of the day, the doctors noted that Eddie's potassium levels were quite high which can be problematic for heart function...potential for irregular rhythms, etc. So as a precaution, he is being admitted and will stay at least overnight. We were hoping he would spend the night at home, but we had also kept alive the possibility of an overnight stay so not a complete shock.
Regarding the biopsy, the surgeons took seven tissue samples and early results could be available tonight. Will certainly provide updates as they're available.
Thanks for the many thoughts and prayers as we once again haunt the halls of Seattle Children's.
However, during the course of the day, the doctors noted that Eddie's potassium levels were quite high which can be problematic for heart function...potential for irregular rhythms, etc. So as a precaution, he is being admitted and will stay at least overnight. We were hoping he would spend the night at home, but we had also kept alive the possibility of an overnight stay so not a complete shock.
Regarding the biopsy, the surgeons took seven tissue samples and early results could be available tonight. Will certainly provide updates as they're available.
Thanks for the many thoughts and prayers as we once again haunt the halls of Seattle Children's.
Once more unto the breach, dear friends...
This will be a challenge . . . writing again after such a
long time. Long on words, short on pictures (although we will post many of
those very soon). I think we planned, in the back of our mind, to give more
regular updates . . . especially with so many of you far away and not having
the advantage of seeing Eddie’s progress in person. However, life does have a
way of getting ahead of us, and the past five months have been anything but
easy.
Putting the most current news on the table, Eddie will be
headed back to Seattle Children’s on Friday for an unexpected catheterization
and biopsy (similar to the process he had in late Jan/early Feb when he was
first diagnosed). This was unexpected for us, but not necessarily unwelcome.
Eddie is showing no signs of rejection and he continues making amazing
progress. In recent months, however, the Heart Center has been reviewing their
cath/biopsy policies and they are now recommending that new transplant patients
be biopsied within 6 months of transplant. Consistent echos are very helpful
(and non-invasive), but the only way to get a clear picture of Eddie’s heart
muscle is to look at it under a microscope . . . and that means a biopsy.
While we’re very nervous about going back to the operating
room, we look forward to having clear assurances that Eddie’s amazing progress
is not hiding any underlying rejection. Rejection can take several forms, often
unnoticeable from the outside, and we are happy to leave him in well-trained and
providential hands. After the miracles we have seen over the past several
months, we know that a power greater than our own sustains us . . . and we
believe God has done and will continue to do great things with Eddie.
Goes without saying, we will share updates as they are
available. A biopsy like this can be an outpatient procedure, assuming they can
feed the catheter through the neck and into the right heart. However, since
Eddie’s neck access was severely compromised while he was on ECMO, it is
possible the surgeons will need to go in through the groin, which would
possibly require an overnight stay. Either way, this is not an overly
complicated process . . . I imagine many of us know someone that has had a
cardiac biopsy . . . and we hope to be home and recovering very quickly.
On a related note, we continue to learn more and
more about heart research . . . it certainly helps to live within driving distance
of top-tier research facilities like UW Medical Center and Seattle Children’s
Research Institute. One of the more exciting advances is the work being done
with stem cells and heart regeneration . . . basically the idea of using stem
cells to help the heart, one of the body’s least regenerative organs, to heal
itself and render unnecessary many dangerous and complicated surgeries and
transplants. Such a future is many years away, but there is amazing work
underway in Seattle to figure out how to get there. We hope this work becomes
even more personal in the months ahead since our new high school freshman has
decided to do his Honors Science research project on heart regeneration and has
been invited to meet with the co-directors of the Institute for Stem Cell and Regenerative Medicine
to discuss potential research options. An amazing development and we are so
proud to see him taking such a bold step forward.
12 July 2012
What a difference each day makes
John mentioned pictures would be coming soon...here are a few of our favorites.
 |
| Brown Bear, Brown Bear, what do you see? I see Eddie laughing at me |
 |
| I'm a "dopter." |
 |
| Rolling down the hill at the Wooden Boat Festival |
Yesterday while visiting our beloved ICU, Nurse Kelly was telling the Docs that Eddie had "climbed right up in that chair." I realized I don't think of such things as milestones anymore given that Eddie is able to do more every day. I am getting to the point where I don't have to spot his every move, worrying he'll fall or not be strong enough to do things alone. We're down to one page of meds, and Eddie kept his weight steady from his
last clinic visit 2 weeks ago to yesterday. I hope he is always glad,
but in a way I look forward to the day when he doesn't look at me and
say, "I'm glad to be at home, not at the hospital." He still says that
all on his own, every day. Today he asked to see his "pump in the
cabinet." He likes to hold up his empty Berlin heart to his belly and
match everything up.
We love to visit Children's and see beloved friends, but we regret there are many who we haven't been able to hug or keep in touch with since Eddie left the hospital. We'll find a way of tracking you down! (or you could get in touch with us :-) We don't want to lose you...you're part of our team.
11 July 2012
Still Here . . .
Embarassing, really . . . that it has been over a month since the last time we wrote. So many things continue to happen and there is no shortage of things to write about, but going back to work and summer break have really wiped us out.
Considering the ups and downs, the close calls, and nerve-wracking months leading up to Eddie's transplant, it is a blessed fact that Eddie has recovered very well in the 2+ months since the operation. Not even a bandage is left . . . just angry scars which will fade over time. He smiles readily and wrestles with brothers and sisters. He walks the stairs and sings and loves to read . . . nothing sweeter than seeing brother reading a book to him in the library yesterday.
For me, the months in the ICU seem like a distant memory. Sarah may feel differently. It was as if we stepped into an alternate reality . . . where deeply invasive surgeries and toxic medications were the norm . . . where such treatments were in fact demonstrations of love and generosity from total strangers. These strangers, soon to become fast friends, were reaching the limits of their professional wisdom and were tapping into their surprisingly vast stores of creativity.
We thank God every day for those beautiful nurses and doctors . . . we miss them terribly and feel a surge of strength when we make surprise visits to the ICU while waiting for Eddie's clinic visits.
Family, friends, neighbors have all done so much and have held our hands and soothed pained hearts (not to mention fed hungry bellies too many times to count). Most would say it is unnecessary, but we spend time every day thinking how we can say thank you . . . not to repay a debt (impossible) but to allow a glimpse of how important each act of service has been for our family.
Sarah will head back to the clinic with Eddie tomorrow . . . we are now going to hospital once every other week for ECHO and clinic. He is down several meds and will be off the steroids within the next week. We wish he would eat more . . . it is still like pulling teeth to get him to eat his meals, but at least he is eating a broader variety of foods. Can you believe we've had to bribe him to eat things like bacon? And he still won't touch Nutella!
More later . . . including pics.
Considering the ups and downs, the close calls, and nerve-wracking months leading up to Eddie's transplant, it is a blessed fact that Eddie has recovered very well in the 2+ months since the operation. Not even a bandage is left . . . just angry scars which will fade over time. He smiles readily and wrestles with brothers and sisters. He walks the stairs and sings and loves to read . . . nothing sweeter than seeing brother reading a book to him in the library yesterday.
For me, the months in the ICU seem like a distant memory. Sarah may feel differently. It was as if we stepped into an alternate reality . . . where deeply invasive surgeries and toxic medications were the norm . . . where such treatments were in fact demonstrations of love and generosity from total strangers. These strangers, soon to become fast friends, were reaching the limits of their professional wisdom and were tapping into their surprisingly vast stores of creativity.
We thank God every day for those beautiful nurses and doctors . . . we miss them terribly and feel a surge of strength when we make surprise visits to the ICU while waiting for Eddie's clinic visits.
Family, friends, neighbors have all done so much and have held our hands and soothed pained hearts (not to mention fed hungry bellies too many times to count). Most would say it is unnecessary, but we spend time every day thinking how we can say thank you . . . not to repay a debt (impossible) but to allow a glimpse of how important each act of service has been for our family.
Sarah will head back to the clinic with Eddie tomorrow . . . we are now going to hospital once every other week for ECHO and clinic. He is down several meds and will be off the steroids within the next week. We wish he would eat more . . . it is still like pulling teeth to get him to eat his meals, but at least he is eating a broader variety of foods. Can you believe we've had to bribe him to eat things like bacon? And he still won't touch Nutella!
More later . . . including pics.
07 June 2012
Clinic Visits and an Old Friend
Not surprisingly, I totally spaced it and forgot to pull back the curtain on Eddie's "old friend" mentioned in an earlier post. Before that, however, it might be helpful to outline what happens when we take Eddie to clinic each week. Even though we're officially discharged, we continue to spend a significant amount of time walking the halls of Seattle Children's.
In general, there are three elements to Eddie's follow-up visits . . . ECHO, clinic, and lab. The ECHO is exactly what it sounds like . . . an echocardiogram to get the best possible set of eyes on Eddie's new heart and assess its function. Now that Eddie has undergone dozens of these over the past few months, he is super relaxed and the 30 minutes fly by quickly. So far so good with Eddie showing improvement every week. Most notably, his TR (tricuspid regurgitation) has diminished significantly since transplant. This is great news since we originally thought there was some damage to the donor valve that would never totally resolve itself and would need to be watched closely for the duration. The improvement, however, appears to signal that this was a temporary issue.
After ECHOs, we usually meet with our transplant cardiologists and coordinators to do a hands-on examination and discuss any specific treatment issues. We talk about meds and often make adjustments to dosing based on how well or poorly Eddie is responding to current treatment. Since we are also taking twice daily vitals at home (blood pressure, heart rate, breathing rate, and temperature), we'll spend some time reviewing any notable trends or patterns and discussing potential next steps.
Finally, and our least favorite part of the process, we head up to the 6th floor for labs. Now that all of Eddie's lines have been removed, we have to draw blood in order get his cyclosporine and electrolyte levels along with his low molecular weight heparin level. The former are critical for determining whether Eddie's immune system is suppressed appropriately to avoid rejection while the latter is measuring the thinness of his blood and is important since Eddie has had several dangerous clotting events over the past few months. These labs must be drawn at very specific times of day (7:30am for cyclo/electrolyte and 11:00 for heparin) and, as you can imagine, involve a lot of tears.
Eddie has put on significant weight since leaving the hospital two weeks ago. As of yesterday, he tipped the scales at 16.1 kg compared to the 13.3 kg he weighed during his transplant evaluations. At his lowest point, he was down to 12.6 kg including his berlin heart pump. It's hard to believe he's gone from being a flyweight to a bruiser in just a few short weeks . . . thanks to a combination of steroids, consistent and predictable nighttime NG feeds and, last but not least, improved appetite. As we back off the prednisone over the next few weeks, he'll probably lose some of his existing bulk.
Finally, during our 6/1 clinic visit, we asked if we'd be able to visit with pathology and see Eddie's old heart. While it seems like a macabre request, we thought it was really important to understand Eddie's disease and put into perspective the miraculous gift we had received from a loving donor. When we walked into the room, a tray was laid out on the table covered with surgical cloth. The pathology fellow introduced himself and then pulled back the cloth . . . and there it was. After we sat gaping for a few minutes listening to his findings, he offered us surgical gloves and asked if we'd like to handle the heart. What an unimaginable privilege . . . to actually hold in our hands the small, diseased heart that both kept Eddie alive and almost brought his short life to an end. After the intensity of the past few months, we almost felt like talking to it, perhaps scolding it, and then certainly forgiving it for its weakness . . . this poor diseased organ that had no business surviving for as long as it did.
So five weeks after transplant and three weeks after coming home, we're on a fairly steady upward trajectory. We're worn down a bit by the med schedule and hospital visits, but looking forward to some family time over the summer . . . once the rain finally stops and the sun makes a cameo appearance.
In general, there are three elements to Eddie's follow-up visits . . . ECHO, clinic, and lab. The ECHO is exactly what it sounds like . . . an echocardiogram to get the best possible set of eyes on Eddie's new heart and assess its function. Now that Eddie has undergone dozens of these over the past few months, he is super relaxed and the 30 minutes fly by quickly. So far so good with Eddie showing improvement every week. Most notably, his TR (tricuspid regurgitation) has diminished significantly since transplant. This is great news since we originally thought there was some damage to the donor valve that would never totally resolve itself and would need to be watched closely for the duration. The improvement, however, appears to signal that this was a temporary issue.
After ECHOs, we usually meet with our transplant cardiologists and coordinators to do a hands-on examination and discuss any specific treatment issues. We talk about meds and often make adjustments to dosing based on how well or poorly Eddie is responding to current treatment. Since we are also taking twice daily vitals at home (blood pressure, heart rate, breathing rate, and temperature), we'll spend some time reviewing any notable trends or patterns and discussing potential next steps.
Finally, and our least favorite part of the process, we head up to the 6th floor for labs. Now that all of Eddie's lines have been removed, we have to draw blood in order get his cyclosporine and electrolyte levels along with his low molecular weight heparin level. The former are critical for determining whether Eddie's immune system is suppressed appropriately to avoid rejection while the latter is measuring the thinness of his blood and is important since Eddie has had several dangerous clotting events over the past few months. These labs must be drawn at very specific times of day (7:30am for cyclo/electrolyte and 11:00 for heparin) and, as you can imagine, involve a lot of tears.
Eddie has put on significant weight since leaving the hospital two weeks ago. As of yesterday, he tipped the scales at 16.1 kg compared to the 13.3 kg he weighed during his transplant evaluations. At his lowest point, he was down to 12.6 kg including his berlin heart pump. It's hard to believe he's gone from being a flyweight to a bruiser in just a few short weeks . . . thanks to a combination of steroids, consistent and predictable nighttime NG feeds and, last but not least, improved appetite. As we back off the prednisone over the next few weeks, he'll probably lose some of his existing bulk.
Finally, during our 6/1 clinic visit, we asked if we'd be able to visit with pathology and see Eddie's old heart. While it seems like a macabre request, we thought it was really important to understand Eddie's disease and put into perspective the miraculous gift we had received from a loving donor. When we walked into the room, a tray was laid out on the table covered with surgical cloth. The pathology fellow introduced himself and then pulled back the cloth . . . and there it was. After we sat gaping for a few minutes listening to his findings, he offered us surgical gloves and asked if we'd like to handle the heart. What an unimaginable privilege . . . to actually hold in our hands the small, diseased heart that both kept Eddie alive and almost brought his short life to an end. After the intensity of the past few months, we almost felt like talking to it, perhaps scolding it, and then certainly forgiving it for its weakness . . . this poor diseased organ that had no business surviving for as long as it did.
So five weeks after transplant and three weeks after coming home, we're on a fairly steady upward trajectory. We're worn down a bit by the med schedule and hospital visits, but looking forward to some family time over the summer . . . once the rain finally stops and the sun makes a cameo appearance.
02 June 2012
Overexposure
The Rotary Club chose Eddie as the Grand Marshal of the Duvall Days parade today so sharing a few photos and video.
27 May 2012
Our New Normal and Homecoming Thanks
As I read through our earlier posts, it seems strange to be sitting comfortably on our living room couch with Eddie playing on the floor. No sounding alarms, pump changes, IV flushes, or late night drama involving tubes of any kind :-) He is talkative and definitely much larger than ever thanks to consistent overnight feedings and steroids. But most importantly, he seems so happy to be home with his brothers and sisters . . . it is wonderful to have him here.
Eddie is definitely still a child of the hospital with a feeding tube in place and a device called a wound vacuum attached to the largest of his healing Berlin Heart incisions. He receives 13 different medications throughout the day which must be administered at 7:00a, 8:00a, noon, 4:00p, 7:00p, 8:00p, and midnight. Sarah and I also give twice-a-day injections for anti-coagulation therapy . . . no, we haven't left coag levels behind just yet.
So yes, I think it's safe to say we're tired. As we adjust to our "new normal", we are developing some strategies to make things a bit easier on ourselves and Eddie, but I doubt the next few months will ever seem comfortable. Our hats are off to the many of you that have ever taken care of a family member with short- or long-term care needs. You are our heroes (and be warned . . . we may reach out for advice!)
We are so grateful to our many wonderful Duvall friends and neighbors that made Eddie's homecoming unforgettable. Driving into town from the south, we were met with beautiful green ribbons tied to dozens of trees, the Duvall town sign at Big Rock, and light posts along Main Street. Approaching our neighborhood, green ribbons and streamers were blowing for Eddie and he was so excited to know this was all for him and his beautiful donor. What a gift for all of us!
Now, as we drive through town and see new bows, ribbons, streamers, or anything else that looks celebratory, Eddie says "For me!" and I believe he genuinely feels loved. And as if it wasn't enough to see the green ribbons on the street and to see the large "Welcome Home" sign on our garage, Eddie was treated to a King County Fire Department welcome from many of his first responders. It was great to see the smiles on their faces knowing that Eddie was home safely. Thanks for being so prepared and responsive every time we've had to call 911 . . . you were at our door in minutes when every minute counted. We love you!
Will write more later about our Friday clinic visit. Everything went smoothly, but we did have a very memorable visit with an old friend of Eddie's.
Eddie is definitely still a child of the hospital with a feeding tube in place and a device called a wound vacuum attached to the largest of his healing Berlin Heart incisions. He receives 13 different medications throughout the day which must be administered at 7:00a, 8:00a, noon, 4:00p, 7:00p, 8:00p, and midnight. Sarah and I also give twice-a-day injections for anti-coagulation therapy . . . no, we haven't left coag levels behind just yet.
So yes, I think it's safe to say we're tired. As we adjust to our "new normal", we are developing some strategies to make things a bit easier on ourselves and Eddie, but I doubt the next few months will ever seem comfortable. Our hats are off to the many of you that have ever taken care of a family member with short- or long-term care needs. You are our heroes (and be warned . . . we may reach out for advice!)
We are so grateful to our many wonderful Duvall friends and neighbors that made Eddie's homecoming unforgettable. Driving into town from the south, we were met with beautiful green ribbons tied to dozens of trees, the Duvall town sign at Big Rock, and light posts along Main Street. Approaching our neighborhood, green ribbons and streamers were blowing for Eddie and he was so excited to know this was all for him and his beautiful donor. What a gift for all of us!
Now, as we drive through town and see new bows, ribbons, streamers, or anything else that looks celebratory, Eddie says "For me!" and I believe he genuinely feels loved. And as if it wasn't enough to see the green ribbons on the street and to see the large "Welcome Home" sign on our garage, Eddie was treated to a King County Fire Department welcome from many of his first responders. It was great to see the smiles on their faces knowing that Eddie was home safely. Thanks for being so prepared and responsive every time we've had to call 911 . . . you were at our door in minutes when every minute counted. We love you!
Will write more later about our Friday clinic visit. Everything went smoothly, but we did have a very memorable visit with an old friend of Eddie's.
25 May 2012
23 May 2012
Homecoming
We're not sure exactly when Eddie will be discharged this afternoon, but we hear there may be some "excitement" in our cul-de-sac this evening. We'll post an ETA as soon as we have it since we wouldn't say no to anyone that wanted to be there to welcome Eddie home.
22 May 2012
One Door Closes As Another Opens
Very difficult to believe our stay at Seattle Children's is coming to an end. Today was really quite hectic and emotionally draining as we started our "prove-to-the-hospital-staff-we-can-take-care-of-Eddie-at-home" routine . . . basically doing vitals, drawing and administering all 12 meds, dropping an NG tube into Eddie's stomach, learning how to run his overnight feeds, and managing his wound care. It's one thing to do this in the hospital where nurses and doctors kindly (but firmly) correct us, but quite another when we're back home trying to figure things out for ourselves. Are we ready for this?
In spite of the fear and worry, it was a beautiful day as so many of our wonderful SCH friends stopped by to say goodbye to Eddie. It is hard for us to imagine, but most of our doctors and nurses had never really seen the Eddie we know. When he rolled into the ICU, he was virtually unresponsive on ECMO and it has only been in the past 1-2 weeks that he has really been his more playful self. Few people expected to see him this way.
We're excited to see our wonderful Duvall friends and neighbors again . . . as full-time rather than part-time residents. When we made the decision to settle in Duvall from out of state five years ago, we had no idea how important that choice would be. We will slowly but surely find our own way to thank you for your love and kindness.
We expect to be discharged tomorrow afternoon, anxious to see what is waiting for us as we turn yet another page in this saga. We love you all!
In spite of the fear and worry, it was a beautiful day as so many of our wonderful SCH friends stopped by to say goodbye to Eddie. It is hard for us to imagine, but most of our doctors and nurses had never really seen the Eddie we know. When he rolled into the ICU, he was virtually unresponsive on ECMO and it has only been in the past 1-2 weeks that he has really been his more playful self. Few people expected to see him this way.
We're excited to see our wonderful Duvall friends and neighbors again . . . as full-time rather than part-time residents. When we made the decision to settle in Duvall from out of state five years ago, we had no idea how important that choice would be. We will slowly but surely find our own way to thank you for your love and kindness.
We expect to be discharged tomorrow afternoon, anxious to see what is waiting for us as we turn yet another page in this saga. We love you all!
19 May 2012
17 May 2012
All in the Family
Eddie is getting stronger every day and we are so amazed by his will to recover. He is still a bit week physically because he hasn't walked since the first week of March, but he is talking, playing, and singing like a three year-old should. It's no surprise that he's charming the floor nurses just like he did in the ICU!
Overall, since he is making such good progress, our focus has turned to education and how to keep Eddie healthy once he comes home. Sarah and I meet with the transplant coordinators and transplant pharmacists almost every day to learn about and begin adjusting to life as a transplant family . . . so daunting. The medications, the lab draws, clinic visits, ECHOs, biopsies. The constant vigilance for symptoms of rejection, daily vital signs, educating friends and neighbors about his condition, and, most of all, doing what we can to help Eddie feel he is normal and can live a rich and full life.
Thanks for everyone's continued kindnesses and well wishes over the past two weeks, even though our updates have been less frequent. We know so many people are interested in and inspired by Eddie's progress. He is a remarkable boy and will grow up with so much gratitude for the love he receives from each of you.
On a seemingly unrelated topic . . .
One of the best undergraduate courses I took at BYU was Larry Wimmer's American Economic History, aka Econ 274 :-). Rather than walking through dry series of lectures on the Industrial Revolution, Reconstruction, or the Great Depression, Dr. Wimmer asked us to use our own family history whenever possible to document our ancestors' experiences and make 19th- and 20th-century American history that much more relevant and exciting.
For example, simply by using publicly available US census data, I was able to study immigration/emigration patterns for several branches of my family, infant and adult mortality rates, occupation trends, economic conditions, slave ownership, and literacy patterns. It was a fascinating way to study our family's history and understand how our ancestors shaped and, in turn, were shaped by American history.
So why do I mention this in Eddie's blog? Well, family history has been on my mind again as we've been talking to the Seattle Children's genetics staff about the possibility of inherited elements of Eddie's heart disease. Certain cardiomyopathies have strong genetic components and often are found in generation after generation of the same family. Other cardiomyopathies, such as Eddie's restrictive diagnosis, very rarely occur in families and root causes are often never discovered.
Several weeks ago, as part of Eddie's treatment, we sent blood samples to Harvard for genetic testing. Since the doctors had no specific idea of what they were looking for, all 46 of Eddie's chromosomes were analyzed for mutations and/or abnormalities. Based on the initial results, the Harvard lab believes they have isolated one genetic mutation that is (was) most likely responsible for Eddie's restrictive cardiomyopathy.
Personally, I was surprised by the results. We had done some very high level scanning of our family tree looking for unexplained deaths at an early age, chronic heart disease, etc. but nothing jumped off the page. After talking to the genetic counselor, however, I've been taking a closer look at my family history and am finding fascinating stories. Thanks to the miracle of the internet, Utah's well-organized death certificate archive, and the LDS Church's unfailing commitment to cataloging and making available historical records as fast as they can scan them, I was able to find detailed death certificates for 36 members of my maternal line in less than three hours. Totally fascinating.
Even more fascinating when you see something like the following death certificate for my great-grandmother's sister. She was only 26 when she died of unknown causes, "sudden but natural." As mentioned previously, one of the hallmarks of cardiomyopathies is their tendency to appear suddenly and without warning. Other common cardiac causes of death I've uncovered include myocarditis, coronary thrombosis, and coronary occlusion, several of which occurred at earlier-than-normal ages.
So not surprisingly, Sarah and I will be tested soon for the same mutation we found in Eddie. We're just learning about the genetic elements of this puzzle so really have no idea about what next steps would look like if we test positive other than probably testing the kids and the potential for increased cardiological monitoring over time.
More details as we have them . . .
Overall, since he is making such good progress, our focus has turned to education and how to keep Eddie healthy once he comes home. Sarah and I meet with the transplant coordinators and transplant pharmacists almost every day to learn about and begin adjusting to life as a transplant family . . . so daunting. The medications, the lab draws, clinic visits, ECHOs, biopsies. The constant vigilance for symptoms of rejection, daily vital signs, educating friends and neighbors about his condition, and, most of all, doing what we can to help Eddie feel he is normal and can live a rich and full life.
Thanks for everyone's continued kindnesses and well wishes over the past two weeks, even though our updates have been less frequent. We know so many people are interested in and inspired by Eddie's progress. He is a remarkable boy and will grow up with so much gratitude for the love he receives from each of you.
On a seemingly unrelated topic . . .
One of the best undergraduate courses I took at BYU was Larry Wimmer's American Economic History, aka Econ 274 :-). Rather than walking through dry series of lectures on the Industrial Revolution, Reconstruction, or the Great Depression, Dr. Wimmer asked us to use our own family history whenever possible to document our ancestors' experiences and make 19th- and 20th-century American history that much more relevant and exciting.
For example, simply by using publicly available US census data, I was able to study immigration/emigration patterns for several branches of my family, infant and adult mortality rates, occupation trends, economic conditions, slave ownership, and literacy patterns. It was a fascinating way to study our family's history and understand how our ancestors shaped and, in turn, were shaped by American history.
So why do I mention this in Eddie's blog? Well, family history has been on my mind again as we've been talking to the Seattle Children's genetics staff about the possibility of inherited elements of Eddie's heart disease. Certain cardiomyopathies have strong genetic components and often are found in generation after generation of the same family. Other cardiomyopathies, such as Eddie's restrictive diagnosis, very rarely occur in families and root causes are often never discovered.
Several weeks ago, as part of Eddie's treatment, we sent blood samples to Harvard for genetic testing. Since the doctors had no specific idea of what they were looking for, all 46 of Eddie's chromosomes were analyzed for mutations and/or abnormalities. Based on the initial results, the Harvard lab believes they have isolated one genetic mutation that is (was) most likely responsible for Eddie's restrictive cardiomyopathy.
Personally, I was surprised by the results. We had done some very high level scanning of our family tree looking for unexplained deaths at an early age, chronic heart disease, etc. but nothing jumped off the page. After talking to the genetic counselor, however, I've been taking a closer look at my family history and am finding fascinating stories. Thanks to the miracle of the internet, Utah's well-organized death certificate archive, and the LDS Church's unfailing commitment to cataloging and making available historical records as fast as they can scan them, I was able to find detailed death certificates for 36 members of my maternal line in less than three hours. Totally fascinating.
Even more fascinating when you see something like the following death certificate for my great-grandmother's sister. She was only 26 when she died of unknown causes, "sudden but natural." As mentioned previously, one of the hallmarks of cardiomyopathies is their tendency to appear suddenly and without warning. Other common cardiac causes of death I've uncovered include myocarditis, coronary thrombosis, and coronary occlusion, several of which occurred at earlier-than-normal ages.
So not surprisingly, Sarah and I will be tested soon for the same mutation we found in Eddie. We're just learning about the genetic elements of this puzzle so really have no idea about what next steps would look like if we test positive other than probably testing the kids and the potential for increased cardiological monitoring over time.
More details as we have them . . .
11 May 2012
Milestones
So many updates since Eddie's transplant and no idea where to begin. The past week has been amazing for our family and we are still trying to digest everything that has happened. It's a bit of a dream, really . . . and our entire focus has been on enjoying this very special time with him. We know we'll never have another chance like it . . .
In short, Eddie is making remarkable progress. The first few days after transplantation were difficult since he was intubated, sedated, and had drainage tube-, IV-, and monitor wire- spaghetti all over his bed. Hard to lie in bed comfortably let alone getting out for a stroll.
We were able to take out his breathing tube Friday afternoon, followed by his drainage tubes and nitric oxide on Sunday. Then Monday morning, one of the transplant cardiologists wanted to see how Eddie would respond to a higher heart rate and set his pacemaker to 105 bpm as opposed to his native rate in the high 80s (he is connected to a temporary external pacemaker which we'll remove before he goes home). Almost immediately we saw a difference . . .
Since Monday, he has been talking, singing, playing, and, perhaps most surprisingly, eating. Cheetos, oyster crackers, fruit roll-ups, and cinnamon toast all get the thumbs up. Still turning up his nose to lasagna and broccoli, but we can live with that . . . our goals are modest at this stage :-)
And then the surprise today was to hear that he is ready to leave the ICU. After 66 days and too many ups and downs to count, we're taking down the decorations and packing our bags for the move tomorrow. Going to the surgical floor is a huge step for Eddie, but we won't deny that we're sorely going to miss the Cardiac ICU. They have been spectacular, heroic, and remarkably human(e) in taking care of Eddie. Rather than disassociating (as I feared at the beginning), most of the doctors and nurses invested themselves completely in Eddie's care and were noticeably affected by both his setbacks and successes.
I feel completely unable to do justice to these amazing individuals. We consider many of them to be extended family and look forward to staying in touch as Eddie grows older. What an amazing reward to see a three year-old heart failure patient grow up to be a healthy young adult, knowing all along that you were partly responsible for bringing him to that point.
Susan B. Anthony is credited with saying that "sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory unannounced, stray dogs that amble in, sniff around a bit and simply never leave. Our lives are measured by these."
I think that's probably right. We have countless small but specific examples of doctors/nurses caring for Eddie that will bring tears to our eyes for the rest of our lives. The same goes for family, friends, and neighbors providing innumerable kind acts of service so that we wouldn't collapse under the weight and pain of Eddie's illness.
"It is not so much our friends' help that comforts us as the confident knowledge that they will come to our aid." Well said, Epicurus . . . words as appropriate today as they were 2,300 years ago.
A few photos to enjoy!
In short, Eddie is making remarkable progress. The first few days after transplantation were difficult since he was intubated, sedated, and had drainage tube-, IV-, and monitor wire- spaghetti all over his bed. Hard to lie in bed comfortably let alone getting out for a stroll.
We were able to take out his breathing tube Friday afternoon, followed by his drainage tubes and nitric oxide on Sunday. Then Monday morning, one of the transplant cardiologists wanted to see how Eddie would respond to a higher heart rate and set his pacemaker to 105 bpm as opposed to his native rate in the high 80s (he is connected to a temporary external pacemaker which we'll remove before he goes home). Almost immediately we saw a difference . . .
Since Monday, he has been talking, singing, playing, and, perhaps most surprisingly, eating. Cheetos, oyster crackers, fruit roll-ups, and cinnamon toast all get the thumbs up. Still turning up his nose to lasagna and broccoli, but we can live with that . . . our goals are modest at this stage :-)
And then the surprise today was to hear that he is ready to leave the ICU. After 66 days and too many ups and downs to count, we're taking down the decorations and packing our bags for the move tomorrow. Going to the surgical floor is a huge step for Eddie, but we won't deny that we're sorely going to miss the Cardiac ICU. They have been spectacular, heroic, and remarkably human(e) in taking care of Eddie. Rather than disassociating (as I feared at the beginning), most of the doctors and nurses invested themselves completely in Eddie's care and were noticeably affected by both his setbacks and successes.
I feel completely unable to do justice to these amazing individuals. We consider many of them to be extended family and look forward to staying in touch as Eddie grows older. What an amazing reward to see a three year-old heart failure patient grow up to be a healthy young adult, knowing all along that you were partly responsible for bringing him to that point.
Susan B. Anthony is credited with saying that "sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory unannounced, stray dogs that amble in, sniff around a bit and simply never leave. Our lives are measured by these."
I think that's probably right. We have countless small but specific examples of doctors/nurses caring for Eddie that will bring tears to our eyes for the rest of our lives. The same goes for family, friends, and neighbors providing innumerable kind acts of service so that we wouldn't collapse under the weight and pain of Eddie's illness.
"It is not so much our friends' help that comforts us as the confident knowledge that they will come to our aid." Well said, Epicurus . . . words as appropriate today as they were 2,300 years ago.
A few photos to enjoy!
 |
| Ah, ECMO . . . we've come such a long way. You saved Eddie's life . . . but we're glad to say goodbye |
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| The "Juice" (and Cheetos) Lady |
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| Wonderful physical therapists |
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| First bites . . . yum, dry toast! |
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| Loving doctors and nurses |
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| Birthday treats for the Cardiac ICU |
 |
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| The Man. Eddie's transplant surgeon. Words fail us . . . |
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| Two of our friendly Cardiac ICU attendings |
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| Puppet show |
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| Final rounds in the Cardiac ICU. Hard to say goodbye. We love you. |
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