We just finished talking to the transplant surgeon and, in short, everything went as smoothly as possible. Eddie went to the OR around 1:30am and over the next three and a half hours was put on heart/lung bypass and had his Berlin Heart "decommissioned." The heart arrived at 5am and Dr. Cohen was able to implant it, make the five connections (superior vena cava, inferior vena cava, aorta, pulmonary arteries, and coronary arteries) and close Eddie's chest is about 90 minutes.
This has been a truly miraculous night for us. We are getting ready to see Eddie right now. We love you!
Showing posts with label Berlin Heart. Show all posts
Showing posts with label Berlin Heart. Show all posts
02 May 2012
28 April 2012
No Surprise
Well, not surprisingly, Eddie did awesome and he is enjoying his 3rd Berlin pump and a cold cup of milk. Procedure went as smoothly as it could. The doctors were worried beforehand about the potential for fracturing the cannulae since this is the second change and the tubes can only take so much tightening before they crack. However, the tubes are holding up very well and no post-op concerns.
Eddie will now begin antiplatelet therapy so we'll probably be talking about dipryidamole, or Persantine (brand name) in the coming days much like we've been talking about Heparin.
Eddie's old pump will now be used for training purposes here at the hospital. Previously, all pumps were returned to the Berlin Heart company, but now that the clinical trials are over, we can keep the pumps and use them how we see fit. Way to contribute to science, Eddie!
Eddie will now begin antiplatelet therapy so we'll probably be talking about dipryidamole, or Persantine (brand name) in the coming days much like we've been talking about Heparin.
Eddie's old pump will now be used for training purposes here at the hospital. Previously, all pumps were returned to the Berlin Heart company, but now that the clinical trials are over, we can keep the pumps and use them how we see fit. Way to contribute to science, Eddie!
Sterile
Just kicked me out of the room (10:58) as they'll be setting up a sterile environment before they put Eddie under. We expect Eddie will be clamped off for only 2-3 minutes, but with all the prep and dressing changes, it will probably be 60-90 minutes before everything is done.
Keep fighting, Eddie!
Keep fighting, Eddie!
Pump #3
It appears likely that Eddie will need yet another Berlin pump since the fibrin deposits have grown larger and they appear to be darkening. We've sent photos to the Berlin Heart folks to get their assessment, but there is little doubt we'll need to move forward with a pump change.
Similar to last time, Eddie will be intubated and anesthetized during the entire procedure. Unlike his previous episode, however, the doctors are comfortable doing the change at bedside rather than taking him to the OR.
For those that weren't following the blog back in late March, you can read about Eddie's first pump change here and here. We hope everything goes as smoothly this time as well.
If everything goes as planned, we'll start the procedure around 11am PDT. Will send any updates prior and will definitely post a follow-up status after we're done.
Adding image of the developing clot so you can visualize what we're talking about.
Similar to last time, Eddie will be intubated and anesthetized during the entire procedure. Unlike his previous episode, however, the doctors are comfortable doing the change at bedside rather than taking him to the OR.
For those that weren't following the blog back in late March, you can read about Eddie's first pump change here and here. We hope everything goes as smoothly this time as well.
If everything goes as planned, we'll start the procedure around 11am PDT. Will send any updates prior and will definitely post a follow-up status after we're done.
Adding image of the developing clot so you can visualize what we're talking about.
26 April 2012
Downs and Ups
We figured the smooth sailing wouldn't last forever, but we weren't expecting this. Earlier today, Eddie started showing mild neurological changes (stopped playing, slurred speech, abnormal sleepiness, difficulty moving his left arm) and after observation, the doctors think Eddie probably suffered a mild stroke. The major risk of being on a Berlin Heart has always been clotting and stroke, and since we've intentionally kept his Heparin levels low, there may have been some clotting happening in the unobservable part of his circuit. (For those of you unfamiliar with the Berlin Heart, probably best to read my earlier posts here or here or Bing it.)
He was immediately taken for a CT scan to determine if there was any bleeding or swelling which, thankfully, there wasn't. An MRI would be able to tell us much more about his condition but, of course, since a filing cabinet-sized air compressor is keeping him alive, MRIs are not in Eddie's future. So we'll run him through another CT scan tomorrow morning which will allow us to compare images from both days . . . it was simply too early this morning to see any impact.
So the good news . . . is that Eddie has made rapid improvement throughout the day. By the time I left the hospital in the mid-afternoon, Eddie was moving all of him limbs, verbalizing, and generally acknowledging that he was understanding what we were saying. He even managed a couple crooked smiles, asked for water, and then requested yet another showing of The Polar Express (a sure sign he is on the road to recovery).
When I checked in with Sarah this evening, not only had he continued to strengthen physically, but he also managed to pass the swallow test (yes, the dreaded swallow test again) and even go for a stroll in his wheelchair around the ICU. As you can see from the wonderful photos below, he looks great and we are so amazed at his resiliency and strength.
Please also take notice of the amazing transformation of the Berlin Heart compressor from a cold, stolid (yet efficient) pumping machine to a much kinder, gentler Thomas the Tank Engine. A huge tip of the hat to the wonderful Child Life program at Seattle Childrens and, more specifically, to the those that have bent over backward to bring a smile to Eddie's face. Not only are they responsible for the large Thomas the Tank Engine poster in his room (made by hand with magic markers . . . THOUSANDS of individual strokes . . . truly impressive) and the Berlin compressor conversion, but also for bringing beautiful dogs to his bedside to give his hands a wonderfully soft resting place. We can't rave enough.
So here we are again, traveling down a road we never expected, but gaining strength all along the way. We're tired, but know that Eddie is in good hands . . . and not just those of his nurses and doctors :-)
We hope to have a less complicated update in the morning. We love you all!
He was immediately taken for a CT scan to determine if there was any bleeding or swelling which, thankfully, there wasn't. An MRI would be able to tell us much more about his condition but, of course, since a filing cabinet-sized air compressor is keeping him alive, MRIs are not in Eddie's future. So we'll run him through another CT scan tomorrow morning which will allow us to compare images from both days . . . it was simply too early this morning to see any impact.
So the good news . . . is that Eddie has made rapid improvement throughout the day. By the time I left the hospital in the mid-afternoon, Eddie was moving all of him limbs, verbalizing, and generally acknowledging that he was understanding what we were saying. He even managed a couple crooked smiles, asked for water, and then requested yet another showing of The Polar Express (a sure sign he is on the road to recovery).
When I checked in with Sarah this evening, not only had he continued to strengthen physically, but he also managed to pass the swallow test (yes, the dreaded swallow test again) and even go for a stroll in his wheelchair around the ICU. As you can see from the wonderful photos below, he looks great and we are so amazed at his resiliency and strength.
Please also take notice of the amazing transformation of the Berlin Heart compressor from a cold, stolid (yet efficient) pumping machine to a much kinder, gentler Thomas the Tank Engine. A huge tip of the hat to the wonderful Child Life program at Seattle Childrens and, more specifically, to the those that have bent over backward to bring a smile to Eddie's face. Not only are they responsible for the large Thomas the Tank Engine poster in his room (made by hand with magic markers . . . THOUSANDS of individual strokes . . . truly impressive) and the Berlin compressor conversion, but also for bringing beautiful dogs to his bedside to give his hands a wonderfully soft resting place. We can't rave enough.
So here we are again, traveling down a road we never expected, but gaining strength all along the way. We're tired, but know that Eddie is in good hands . . . and not just those of his nurses and doctors :-)
We hope to have a less complicated update in the morning. We love you all!
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| The Artists |
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| Berlin Heart Transformed |
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| The Train Embarks |
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| Speaks for Itself |
15 April 2012
Day 40
Happy Tax and Titanic Day . . . a seemingly appropriate combination of ignominious events to share the same date. Regrets to any of you celebrating a birthday on April 15th . . . at least this year the IRS was generous enough to let us file through tomorrow. Calling all procrastinators . . .
Below, the first complete Harper Family photo in a long time. We took Eddie out for a stroll around the ICU again today . . . this time sitting in a wheelchair with Sarah. What you can't see are the two nurses responsible for pushing the Berlin Heart compressor (under the laptop) and the rolling "tower of medicine" that accompanies Eddie wherever he goes (strategically placed to my left off camera).
Eddie had another good day today. For the most part, his vitals and labs are stable, no real fever, bleeding seems to be under control, and two ECHOs show only very small amounts of fluid in his pericardium (so no immediate danger of repeating his tamponade episodes). For this week, we'll begin working very closely with Physical Therapy and Speech/Nutrition to get him as strong as possible in advance of transplant.
Gratifying moment . . . our transplant surgeon stopped by this morning and wanted to let us know that he didn't think he had ever seen the staff rally behind a patient the way everyone has for Eddie. It probably helps that he's so darn cute, of course, but I know it's also a function of how critically ill he has been and how strong he has fought back. To top it off, there is a whiff of miracle about this boy and it's wonderful to see how many people he has inspired over the past several weeks.
To express its gratitude, Seattle Children's began sending Eddie delicious meal trays yesterday. Menu samplings include pureed maple pancakes, pureed egg souffle, pureed potatoes, and (my favorite) pureed macaroni and cheese. And as you can tell from the photo below, the culinary staff has some wicked creativity skills since Eddie's pureed corn entrée is even molded in the shape of, yep, an ear of corn!
For those patient souls still waiting for a real Eddie smile, I hope this clip satisfies. One of our beautiful transplant friends stopped by the other day and dropped off a gift for Eddie . . . the "magic" swimming clown fish (aka Nemo). It was a huge hit and his face says it all . . . even though he's not ready to completely give up on his Thomas engines.
Have a wonderful week!
Below, the first complete Harper Family photo in a long time. We took Eddie out for a stroll around the ICU again today . . . this time sitting in a wheelchair with Sarah. What you can't see are the two nurses responsible for pushing the Berlin Heart compressor (under the laptop) and the rolling "tower of medicine" that accompanies Eddie wherever he goes (strategically placed to my left off camera).
Eddie had another good day today. For the most part, his vitals and labs are stable, no real fever, bleeding seems to be under control, and two ECHOs show only very small amounts of fluid in his pericardium (so no immediate danger of repeating his tamponade episodes). For this week, we'll begin working very closely with Physical Therapy and Speech/Nutrition to get him as strong as possible in advance of transplant.
Gratifying moment . . . our transplant surgeon stopped by this morning and wanted to let us know that he didn't think he had ever seen the staff rally behind a patient the way everyone has for Eddie. It probably helps that he's so darn cute, of course, but I know it's also a function of how critically ill he has been and how strong he has fought back. To top it off, there is a whiff of miracle about this boy and it's wonderful to see how many people he has inspired over the past several weeks.
To express its gratitude, Seattle Children's began sending Eddie delicious meal trays yesterday. Menu samplings include pureed maple pancakes, pureed egg souffle, pureed potatoes, and (my favorite) pureed macaroni and cheese. And as you can tell from the photo below, the culinary staff has some wicked creativity skills since Eddie's pureed corn entrée is even molded in the shape of, yep, an ear of corn!
For those patient souls still waiting for a real Eddie smile, I hope this clip satisfies. One of our beautiful transplant friends stopped by the other day and dropped off a gift for Eddie . . . the "magic" swimming clown fish (aka Nemo). It was a huge hit and his face says it all . . . even though he's not ready to completely give up on his Thomas engines.
Have a wonderful week!
13 April 2012
Catching Up
Things change so quickly around here that it's hard to remember the details if I skip a day or two, so forgive the scattered update. And before I get to Eddie's status, I just wanted to remind everyone (including ourselves) why we moved to Seattle in the first place. After the endless months of drizzle, rain, sleet, snow, and general sunlessness, we are suddenly blessed with this . . .
And this . . .
And this . . .
One of the blessings of living at Seattle Children's right now are the gorgeous views of Lake Washington, augmented by the many blossoming cherry and tulip trees in Laurelhurst.
When all of the current craziness dies down, we'll gladly accept reservations from out-of-town visitors for next spring / summer. There's really nothing quite like it . . .
So to Eddie . . . he is stable after Tuesday's surgery and actually had very good moments today. The key story continues to be the search for an acceptable balance between bleeding and clotting and we're still not sure where that is. We turned the Heparin off after surgery, but started dialing it back up about 24 hours later. The ICU physicians are super concerned about the risk of clotting and stroke since that has been their experience with several previous Berlin Heart patients. We are continuously monitoring his hematological labs and making adjustments every day. At the moment, his chest drainage is still clear and unbloody with Heparin at about 75% of previous levels . . . that is good.
From a clotting standpoint, his pump looks pretty good, but he does have a spot of fibrin buildup in one valve. We are watching closely and will not hesitate to change out his pump again if needed.
Tomorrow morning, we will take Eddie to the fluoroscopy lab to perform a more intensive swallow test. By giving Eddie liquids of various thickness mixed with barium, we can watch a live picture to see exactly how well he is swallowing. The video below is a fairly good representation of what Eddie will be subjected to except that I assume they won't have him try to eat anything . . . just drink. And if all goes well, we should be able to accelerate his liquid diet regimen (aka apple juice!) . . . fingers crossed.
Sarah and I had the chance again to participate in Eddie's Berlin Heart dressing change this afternoon . . . a process which never ceases to amaze (or shock) us. It's hard to believe a body can handle this kind of intentionally inflicted trauma, but we are thankful for diligent nurses that take such care to treat Eddie's many wounds. While we may have needed to turn away from time to time, we were glad to assist and couldn't help but feel a unique and intimate connection with Eddie. The raw physicality of the experience brought to mind Paul's famous "fleshy tables of the heart" and Shakespeare/Shylock's "pound of flesh." I'll never read those words the same way again :-)
Before changing his dressing, the nurses gave Eddie a cocktail of Fentanyl and Versed to take the edge off. I think we can officially declare this to be the perfect medicinal match for Eddie since he spent the following three hours as lucid, talkative, funny, and spontaneous as I've ever seen him. It was wonderful.
On the homefront, some good news . . . and some not-so-good news. First, our newest Cub Scout took third place in his first Pinewood Derby. Congratulations on a great run!
Unfortunately, our aspiring ballerina appears to have broken her foot and will need to wear a "boot" 24/7 for the next three weeks at least. Ah, youth. While the picture below is not the actual image of her foot, it looks almost identical to the film we saw this morning at the clinic. That would be a fractured 5th metatarsal :-(
Looks like awesome weather this weekend so hope everyone has plans to enjoy it! Bedtime.
06 April 2012
Remarkable
"It's like losing a wing at 35,000 feet, landing the airplane, and then calling it a great flight."
That was the analogy given to us this morning by the Director of Cardiac ICU about Eddie's operation yesterday. He was referring specifically to the release of the clot in his right ventricle on the operating table and the resulting pulmonary embolism (PE). We are just now getting the complete story of what happened and it appears the clot definitely did dislodge during the procedure and, with its significant size, should have been fatal. In fact, the same doctor told us he's never seen anything like it . . . the PE should have been "game, set, and match" for Eddie.
As you'd expect, this morning's rounds were about as celebratory as they get with an ICU staff. Eddie had virtually no bleeding overnight, and what little there was, was overwhelmingly serous. His blood pressure, after being elevated yesterday, dropped to normal levels. Lungs are clear, kidneys doing great, no pericardial effusion, no clots in the heart or Berlin pump, no fever, and as of a couple hours ago, no breathing tube. Lest we all get carried away with good news, he continues to have irregular heart rhythms so we are increasing his potassium levels and may need to put him back on amiodarone. No matter which way we slice it, however, we can't deny that we're thrilled with his progress and it's nothing short of remarkable.
Eddie's having a good morning and we're hoping to let him recover a bit from the craziness of the past few days. As I write, he's enjoying Sarah's dramatic interpretation of Horton Hears a Who!
We plan to leave the Heparin off today to limit any bleeding, but will watch his pump very carefully and will ECHO him this afternoon to make sure no clots are forming. If all goes well, we'll probably turn the Heparin back on tomorrow. As the ICU staff told us, this is definitely not a path they would ever follow for another patient (meaning actively turning off anti-coagulation treatment on an external heart pump), but as is clear, Eddie is a different kind of patient.
We are very conscious of the fact that any of these events (or numerous others) could happen again at any time and put Eddie in danger. However, we are celebrating the fact that he is with us today and know that he is being watched over.
That was the analogy given to us this morning by the Director of Cardiac ICU about Eddie's operation yesterday. He was referring specifically to the release of the clot in his right ventricle on the operating table and the resulting pulmonary embolism (PE). We are just now getting the complete story of what happened and it appears the clot definitely did dislodge during the procedure and, with its significant size, should have been fatal. In fact, the same doctor told us he's never seen anything like it . . . the PE should have been "game, set, and match" for Eddie.
As you'd expect, this morning's rounds were about as celebratory as they get with an ICU staff. Eddie had virtually no bleeding overnight, and what little there was, was overwhelmingly serous. His blood pressure, after being elevated yesterday, dropped to normal levels. Lungs are clear, kidneys doing great, no pericardial effusion, no clots in the heart or Berlin pump, no fever, and as of a couple hours ago, no breathing tube. Lest we all get carried away with good news, he continues to have irregular heart rhythms so we are increasing his potassium levels and may need to put him back on amiodarone. No matter which way we slice it, however, we can't deny that we're thrilled with his progress and it's nothing short of remarkable.
Eddie's having a good morning and we're hoping to let him recover a bit from the craziness of the past few days. As I write, he's enjoying Sarah's dramatic interpretation of Horton Hears a Who!
We plan to leave the Heparin off today to limit any bleeding, but will watch his pump very carefully and will ECHO him this afternoon to make sure no clots are forming. If all goes well, we'll probably turn the Heparin back on tomorrow. As the ICU staff told us, this is definitely not a path they would ever follow for another patient (meaning actively turning off anti-coagulation treatment on an external heart pump), but as is clear, Eddie is a different kind of patient.
We are very conscious of the fact that any of these events (or numerous others) could happen again at any time and put Eddie in danger. However, we are celebrating the fact that he is with us today and know that he is being watched over.
05 April 2012
[Correction]: Auf Wiedersehen, Berlin
As Eddie was preparing to go to the OR, we told him the surgeons were going to take away his "other" heart. He gave us a funny look, screwing up his eyebrows, as if to tell us he didn't think that was such a good idea. As it turns out, he had the last laugh since he just came back to his room still attached to his Berlin heart!
So a couple surprises to note. First, after exploring with the transesophegeal ECHO, there were no signs of either left or right ventricular blood clots. We believe the LV clots dissolved or otherwise left the heart last night or this morning with no noticeable effect. The RV clot was clearly there during this morning's ECHO so we think it may have dislodged during today's procedure. But most importantly, there is no evidence of the kind of pulmonary distress associated with a pulmonary embolism.
Second, and perplexingly, we still found no bleeding in the pericardium. Since Eddie's bleeding seemed to have stopped about two hours before surgery (we thought it was probably due to a clot in his chest tube), Dr. Cohen was inclined to trust his eyes and leave good enough alone. That means the Berlin stays in place and we'll wait to see if the bleeding eventually stops.
Since the clots have disappeared, we're more comfortable turning off the Heparin for a couple days which should help the bleeding slow down. If we can get the bleeding to stop, then we'll turn the Heparin back on which should keep the Berlin pump clean. Regardless, we're back to playing the "wait and see" game and it's far too early to declare any definitive victory . . .
Sarah and I were treated to a bonus once Eddie came back to the room. Typically the nurses ask us to leave while they change his Berlin dressings (both for sterility reasons as well as some parents have been known to faint), but they thought it was about time we saw what they do each day. Neither of us fainted, but we can assure you it's not a sight for the "faint of heart" (pun intended). The combination of his ECMO and heart surgery incisions, two Berlin heart cannulae sites and two chest drainage tubes would have brought a smile to Victor Frankenstein's face.
So that's it . . . we'll keep the (non-alcoholic) champagne corked for now :-), but will celebrate each small victory as we find them.
So a couple surprises to note. First, after exploring with the transesophegeal ECHO, there were no signs of either left or right ventricular blood clots. We believe the LV clots dissolved or otherwise left the heart last night or this morning with no noticeable effect. The RV clot was clearly there during this morning's ECHO so we think it may have dislodged during today's procedure. But most importantly, there is no evidence of the kind of pulmonary distress associated with a pulmonary embolism.
Second, and perplexingly, we still found no bleeding in the pericardium. Since Eddie's bleeding seemed to have stopped about two hours before surgery (we thought it was probably due to a clot in his chest tube), Dr. Cohen was inclined to trust his eyes and leave good enough alone. That means the Berlin stays in place and we'll wait to see if the bleeding eventually stops.
Since the clots have disappeared, we're more comfortable turning off the Heparin for a couple days which should help the bleeding slow down. If we can get the bleeding to stop, then we'll turn the Heparin back on which should keep the Berlin pump clean. Regardless, we're back to playing the "wait and see" game and it's far too early to declare any definitive victory . . .
Sarah and I were treated to a bonus once Eddie came back to the room. Typically the nurses ask us to leave while they change his Berlin dressings (both for sterility reasons as well as some parents have been known to faint), but they thought it was about time we saw what they do each day. Neither of us fainted, but we can assure you it's not a sight for the "faint of heart" (pun intended). The combination of his ECMO and heart surgery incisions, two Berlin heart cannulae sites and two chest drainage tubes would have brought a smile to Victor Frankenstein's face.
So that's it . . . we'll keep the (non-alcoholic) champagne corked for now :-), but will celebrate each small victory as we find them.
Auf Wiedersehen, Berlin
It's hard to believe any three year-old could go through as much as our Eddie has, but here we are. As we speak, he's back in the OR and our surgeons plan to remove his Berlin heart. His bleeding continued for most of the morning and then suddenly slowed . . . his ECHO showed new pericardial effusion which obviously wasn't draining. So either his chest tube was blocked or he was developing pockets of fluid unreachable by the existing drain.
The plan is to open his chest and see if by chance there is any evidence of a single source of bleeding (highly unlikely since he was just in the OR on Tuesday and there was no evidence then). Assuming there will be no obvious bleeding source, they'll drain all the fluid they can and then close his chest. At that point, the Berlin pump will be disconnected and then replaced with a modified ECMO circuit. Since Eddie's right ventricle and lungs are working well, there will be no need for the oxygenation functionality of ECMO (the lung) so it will just be a closed circuit from the left ventricle to the centrifugal pump to the aorta.
A couple of the key benefits of this approach will be to eliminate the Berlin (to which Eddie seems to have some kind of inflammatory response) and stop the Heparin infusions Eddie currently needs to keep his pump clot free. Without the Heparin, his clotting function should improve and slow the bleeding. However, this also means he will be at risk of developing new clots in his heart, but this is a risk we are more comfortable taking . . . especially because we think the clots only formed in the first place because of his constricted heart during his tamponade on Sunday . . . an episode we hope to avoid in the future.
One piece of (apparent) good news is that the clots in the left ventricle seem to have vanished since yesterday. Nothing catastrophic has happened so we assume the clot dissolved . . . or ended up somewhere harmless.
Will share more details as we have them . . .
The plan is to open his chest and see if by chance there is any evidence of a single source of bleeding (highly unlikely since he was just in the OR on Tuesday and there was no evidence then). Assuming there will be no obvious bleeding source, they'll drain all the fluid they can and then close his chest. At that point, the Berlin pump will be disconnected and then replaced with a modified ECMO circuit. Since Eddie's right ventricle and lungs are working well, there will be no need for the oxygenation functionality of ECMO (the lung) so it will just be a closed circuit from the left ventricle to the centrifugal pump to the aorta.
A couple of the key benefits of this approach will be to eliminate the Berlin (to which Eddie seems to have some kind of inflammatory response) and stop the Heparin infusions Eddie currently needs to keep his pump clot free. Without the Heparin, his clotting function should improve and slow the bleeding. However, this also means he will be at risk of developing new clots in his heart, but this is a risk we are more comfortable taking . . . especially because we think the clots only formed in the first place because of his constricted heart during his tamponade on Sunday . . . an episode we hope to avoid in the future.
One piece of (apparent) good news is that the clots in the left ventricle seem to have vanished since yesterday. Nothing catastrophic has happened so we assume the clot dissolved . . . or ended up somewhere harmless.
Will share more details as we have them . . .
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