As mentioned previously, the most difficult element of Eddie's treatment at this stage is the hemodynamic balancing act that keeps both bleeding and clot development to a minimum. Clearly, it would seem impossible to have both (or neither, as we would prefer), but it's not always that simple as was evident in this episode from two weeks ago where we did have increased bloody output combined with cardiac blood clots.
Yesterday evening, we noted once again that Eddie's chest tube output was decreasing (sign of clotting) and the output seemed bloodier. His central venous pressure (CVP) was also climbing. At the same time, we saw his Berlin Heart filling much better than previously so, as usual, there were counterbalancing issues at play.
Around midnight, his chest tube stopped draining altogether and another ECHO was called for to see if, once again, we were going to find pericardial effusion and another trip to the OR. Eddie wasn't showing the same outward signs of distress as in previous episodes (mottled skin color, poor perfusion, etc.) so we weren't sure what to expect. Luckily the ECHO showed little to no fluid buildup and we decided to watch him closely overnight and then make more concrete care decisions in the morning.
During today's rounds, and after a couple overnight adjustments to Eddie's Heparin dose, we again had to acknowledge that data-driven hematological models were going to be woefully inadequate for explaining Eddie's responses to treatment. Of course we will continue to run all the standard hematological labs, but for making treatment decisions, we would need to focus on old-fashioned hands-on observation.
In the late morning, Eddie's chest tube began draining again very slowly. This was good news for two reasons: 1) it proved the chest tube was still patent (open), and 2) it seemed that drainage volumes could finally be actually declining. Four weeks after implanting the Berlin Heart, it could be that he wouldn't need a chest tube for much longer . . . a hope we're trying not to get too attached to since we know how quickly things can change.
Most encouraging right now is the fact that Eddie is eating and drinking fairly consistently. He is most interested in drinking water and milk (goodbye apple juice?) and eating Cheez-Its, SweetTarts, M&Ms, mashed potatoes, and Ritz crackers with cheese. Hey, gotta do what you gotta do to get this boy to eat!
Behaviorally, Eddie is doing better every day. Smiles are much easier to come by and he loves playing with his stuffed animals, puppets, and other toys. We took him for another walk around the unit today (in his wheelchair) and I think he looks less fragile that he did last week. Our nutritionist is single-minded in her quest to fatten Eddie up!
Showing posts with label tamponade. Show all posts
Showing posts with label tamponade. Show all posts
18 April 2012
09 April 2012
Easter Monday
Luckily for me, Easter Monday is an observed holiday in over 110 countries (and western New York . . . Happy Dyngus Day, Buffalo!) so I can still squeeze in some Easter thoughts along with an update on Eddie tonight.
We spent a lot of time talking about Eddie's fluid balance today. For cardiomyopathy patients, monitoring and controlling fluid intake and output is super important since too much fluid in the body makes it more difficult for a weak heart to pump effectively. In fact, the very first thing the cardiac ICU nurses do during rounds is to tick through the list of all positive and negative fluid flows (In: NG feeds, blood transfusions, IV medications; Out: Urine, chest tube drainage, bleeding) and then we set specific goals for what Eddie's net balance should be during the day.
When his fluid balance is too high, Eddie gets a fast-acting diuretic like Lasix. When he is dry, we may give him boluses of saline to bring him back in line. Being too wet or too dry has dramatic impact on how his Berlin pump fills and empties so we keep a very close eye on his status. Similar to how we walked the clotting/anti-coagulation tightrope last week, it is a real balancing act to ensure Eddie is in the best place possible for an eventual transplant.
So one of the reasons why the topic came up again today was related to drinking. You may remember that Eddie was drinking thickened juice last weekend before his tamponade episode pushed all oral nutrition options off the table. Now that he's in recovery, it's about time for Eddie to dip his toes in again and "fluid balance" reared it's ugly head. Because of their ongoing diuretic regimen, cardiomyopathy patients are often thirsty and Eddie is no exception. It is hard to watch him beg for something to drink and not be able to get anything in the immediate term.
Our doctors and nurses have been very flexible in letting us "bend the rules" from time to time, and I think they are doing their best to keep Eddie healthy. One of the other challenges comes in the form of his ability to swallow properly and keep oral liquids out of his windpipe. I wasn't at the hospital today for his speech therapy session, but it sounds like the results were "inconclusive" which will lead to further studies before giving him the full green light on drinking. In the meantime, they are allowing Eddie to drink small amounts of thickened liquid again which is much better than nothing.
Otherwise, today was a pretty good day. His chest output seems to be increasing, but it is still primarily serous rather than bloody. Berlin wasn't filling perfectly, but ok. Good perfusion and warm all over. Most notably, he is more animated every day and is talking more and more. We spent 15-20 minutes this morning playing with several of his puppets (including his favorite, the Chicken Beaver . . . don't ask . . .) and he was laughing freely. So good to see the smiles and hear the laughter that we love.
Turning back to Easter, forgive my personal indulgence, but I wanted to share one of my favorite devotional poems from my favorite devotional poet, George Herbert. Few people read Herbert anymore and I can understand why . . . it's religious, difficult to understand, and, well, 400 years old. However, I am always impressed by its (and his) humility. This was a man who was born into an aristocratic family, close friends with John Donne, was a favorite of King James I, and yet rejected material and secular rewards and pursued the quiet life of a parish priest and poet.
Herbert's pattern poem "Easter Wings" is remarkable not only for its novel conceit (Wow! A poem shaped like wings!), but for the way each stanza closes, managing to find not sorrow in adversity and trial, but rather enlightenment and joy ("Then shall the fall further the flight in me / Affliction shall advance the flight in me.") While I don't relish the idea of walking the difficult path ahead, I do find comfort in knowing that we'll arrive at our destination more enlightened than otherwise.
And finally, I thought I'd include a link to a sermon that has brought me great comfort since I heard it a few years ago. Jeffrey R. Holland is a former president of Brigham Young University and of the American Association of Presidents of Independent Colleges and Universities. He has received the Torch of Liberty award from the Anti-Defamation League. And he now serves as a member of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter-day Saints.
While Elder Holland's talk clocks in at over 18 minutes (well worth the investment), I was struck by his comments that start around 12:18.
We spent a lot of time talking about Eddie's fluid balance today. For cardiomyopathy patients, monitoring and controlling fluid intake and output is super important since too much fluid in the body makes it more difficult for a weak heart to pump effectively. In fact, the very first thing the cardiac ICU nurses do during rounds is to tick through the list of all positive and negative fluid flows (In: NG feeds, blood transfusions, IV medications; Out: Urine, chest tube drainage, bleeding) and then we set specific goals for what Eddie's net balance should be during the day.
When his fluid balance is too high, Eddie gets a fast-acting diuretic like Lasix. When he is dry, we may give him boluses of saline to bring him back in line. Being too wet or too dry has dramatic impact on how his Berlin pump fills and empties so we keep a very close eye on his status. Similar to how we walked the clotting/anti-coagulation tightrope last week, it is a real balancing act to ensure Eddie is in the best place possible for an eventual transplant.
So one of the reasons why the topic came up again today was related to drinking. You may remember that Eddie was drinking thickened juice last weekend before his tamponade episode pushed all oral nutrition options off the table. Now that he's in recovery, it's about time for Eddie to dip his toes in again and "fluid balance" reared it's ugly head. Because of their ongoing diuretic regimen, cardiomyopathy patients are often thirsty and Eddie is no exception. It is hard to watch him beg for something to drink and not be able to get anything in the immediate term.
Our doctors and nurses have been very flexible in letting us "bend the rules" from time to time, and I think they are doing their best to keep Eddie healthy. One of the other challenges comes in the form of his ability to swallow properly and keep oral liquids out of his windpipe. I wasn't at the hospital today for his speech therapy session, but it sounds like the results were "inconclusive" which will lead to further studies before giving him the full green light on drinking. In the meantime, they are allowing Eddie to drink small amounts of thickened liquid again which is much better than nothing.
Otherwise, today was a pretty good day. His chest output seems to be increasing, but it is still primarily serous rather than bloody. Berlin wasn't filling perfectly, but ok. Good perfusion and warm all over. Most notably, he is more animated every day and is talking more and more. We spent 15-20 minutes this morning playing with several of his puppets (including his favorite, the Chicken Beaver . . . don't ask . . .) and he was laughing freely. So good to see the smiles and hear the laughter that we love.
Turning back to Easter, forgive my personal indulgence, but I wanted to share one of my favorite devotional poems from my favorite devotional poet, George Herbert. Few people read Herbert anymore and I can understand why . . . it's religious, difficult to understand, and, well, 400 years old. However, I am always impressed by its (and his) humility. This was a man who was born into an aristocratic family, close friends with John Donne, was a favorite of King James I, and yet rejected material and secular rewards and pursued the quiet life of a parish priest and poet.
Herbert's pattern poem "Easter Wings" is remarkable not only for its novel conceit (Wow! A poem shaped like wings!), but for the way each stanza closes, managing to find not sorrow in adversity and trial, but rather enlightenment and joy ("Then shall the fall further the flight in me / Affliction shall advance the flight in me.") While I don't relish the idea of walking the difficult path ahead, I do find comfort in knowing that we'll arrive at our destination more enlightened than otherwise.
And finally, I thought I'd include a link to a sermon that has brought me great comfort since I heard it a few years ago. Jeffrey R. Holland is a former president of Brigham Young University and of the American Association of Presidents of Independent Colleges and Universities. He has received the Torch of Liberty award from the Anti-Defamation League. And he now serves as a member of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter-day Saints.
While Elder Holland's talk clocks in at over 18 minutes (well worth the investment), I was struck by his comments that start around 12:18.
[Jesus'] solitary journey brought great company for our little version of that path—the merciful care of our Father in Heaven, the unfailing companionship of this Beloved Son, the consummate gift of the Holy Ghost, angels in heaven, family members on both sides of the veil, prophets and apostles, teachers, leaders, friends. All of these and more have been given as companions for our mortal journey because of the Atonement of Jesus Christ and the Restoration of His gospel. Trumpeted from the summit of Calvary is the truth that we will never be left alone nor unaided, even if sometimes we may feel that we are.
As we approach this holy week—Passover Thursday with its Paschal Lamb, atoning Friday with its cross, Resurrection Sunday with its empty tomb—may we declare ourselves to be more fully disciples of the Lord Jesus Christ, not in word only and not only in the flush of comfortable times but in deed and in courage and in faith, including when the path is lonely and when our cross is difficult to bear.
Our family has passed some very difficult days and nights recently, yet never have we doubted the care of our loving friends and family. You have been saviors to us in so many ways and we feel your hands, your tears, and your words as vicarious blessings from our Exemplar par excellence. You are His hands, and we are profoundly thankful for it.
05 April 2012
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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