This afternoon Aaron T. Sterling lost his long struggle. He passed away peacefully, at 2:14 PM in my arms, and us (me, his parents, brother and sister-in-law) by his side. To say he was an important part of our lives would be an understatement. He will be deeply missed, not only by us, but everyone who knew him. We miss him already. As we make arrangements to celebrate his life, in North Carolina and in Maine, we will let you know. Your support has been invaluable to us, and we won’t hesitate to lean on you if we need to. May he rest in peace, and breathe easy. Heaven got another angel today. I love you Aaron, always and forever, until we meet again. It just doesn't seem real.
Kellie, Debra, John, Tyler, and Danielle
Saturday, August 27, 2011
A Long Update, Riding an Emotional Rollercoaster, Holding onto Faith and Hope, and Praying for a Miracle
Been a very, very long day. I am going to apologize right off about the length of this post. I know it is long, and I know not all of you want all the little details, but I needed to just get it all out, and I know there are quite a few of you that want an update on Aaron and what is going on.
Aaron's nurse tonight let me stay almost 3 hours past the MICU visiting hours just sitting with him, holding his hand and telling him how much I and everyone else loves him and to keep up the good fight. He seems to have leveled out a bit tonight. He is on a lot less blood pressure meds (he was put on a second one this morning, and is still on 2, but the dosages of one are a lot less. His blood pH, affected by high carbon dioxide levels, which has been very low, is slowly coming up, allowing the blood pressure meds to work more effectively. He is still having continuous high fevers around 102-103 that even Tylenol isn't doing much to break/bring his temperature down, and they have a cooling blanket on him hoping that will help. I brought up the idea of possibly giving him IV Tylenol (IV Tylenol is actually brand new here in the US- they have been using it in Europe for years now, and it seemed to really help break the high fevers when he got it in July, so we are hoping it will be just as effective now), instead of the oral, since he doesn't seem to be responding, and may not even be absorbing the oral (they crush up the pills, along with his other pills, dilute it in water and put it down the tube he has from his mouth into his stomach. He is on tube feeds through another tube that goes from his mouth into his small intestine- this prevents aspiration/food, stomach acid, fluids from going down into his lungs. He did have a stomach wrap to tighten where the esophagus meets the stomach to prevent acid reflux and aspiration, since both are very damaging to lungs, especially transplanted lungs). We are hoping that the IV Tylenol will be much more effective. They have started him on another IV antibiotic, one they don't use often and especially not in adults because it is so tough on the kidneys and is kind of a drug of last resort. He has cultured mucoid pseudomonas in his sinuses (they aren't convinced that that is the reason he is having fevers of almost 103 or why he has gone downhill today. It may not even be in his lungs or making his sick at all. People with Cystic Fibrosis normally are colonized with some type of pseudomonas, especially because CF causes thick mucous and secretions, particularly in the lungs and sinuses, and due to the think mucus, it is almost impossible to completely get rid of the pseudomonas, and it stays in the body. It doesn't necessarily make you sick or actively infected, but just sits there. Because of a lot of pseudomonas sinus/lung infections/pneumonia, people with CF end up getting treated with several very powerful antibiotics throughout their lifetime, and because they can't completely eradicate the pseudomonas, it builds up resistance, making it more difficult to treat, and sometimes to the point where no antibiotics can effectively treat the infection. Hope that makes sense- been a long day, and I may not be explaining things as well as I could be) that is normally pan-resistant (meaning resistant to all known antibiotics), but they are trying to get sensitivities on it anyway to see if any antibiotics would work that he isn't already on- unlikely. The colistin (antibiotic) can be used for the mucoid pseudomonas. They are giving it to him every other day, trying not to be too tough on his kidneys.
His kidney function is getting worse every day, and today is pretty bad. He is not making a lot of urine, and that concerns them, as his kidneys aren't working like they should. Due to his kidney function and the fact that his proteins are low (allowing fluids to leak out of his blood vessels into his tissues), he is very, very swollen and probably has a good 25 pounds of extra fluid in his tissues, if not more. They are trying to give him diuretics, but he isn't responding as well to them as he has in the past. He did put out a little bit more from the lasix tonight, and they just gave him a pretty big dose, hoping to jump start his kidneys and get some fluid off. If that doesn't work, they may either put him on a diuretic drip or start continuous dialysis over the weekend to get some volume/fluid off of him. Especially with lung infections and lung transplant patients, any extra fluid tends to go directly to the lungs, and they cut the lymphatic/drainage system during transplant, so the lungs aren't able to drain themselves. The fluid can definitely cause problems in his lungs and with his ventilation. As the transplant pulmonologists always say, "Dry lungs are happy lungs." Just because they put him on dialysis for the weekend, doesn't mean that he would necessarily be on it for good if he makes it through this. His kidneys just might need a break and some help for a few days. The other issue with using diuretics is that it can drop his already low blood pressure even more, which would then call for an increase in the meds they are using to increase his blood pressure already. They have to give the body time to shift fluid from his tissues back into his vascular system, after they give the lasix
His last blood gas looked better than this morning's so they are holding tight on the oscillatory vent settings- 60% oxygen and 7 breaths a second/420 breaths a minute, not needing to go up of the settings and support, but not being able to come down anymore either. They have left the mean airway pressure at 26 or so, he needs to be at 20 before they would consider weaning him over to the conventional vent, but that is a while in the future, if he makes it through this (He is on a lot of medication for sedation as well as paralytics- he is requiring a lot of sedation as his body builds up a tolerance to the medications, and it takes a lot to suppress your natural drive to breath. He was still taking breaths on top of the oscillator, and that can be very detrimental for him. As was mentioned in a previous update, because you are getting so many breaths a minute, the oscillator basically holds open the lungs and alveoli, and any "natural" breathing can squeeze those alveoli shut and he an de-recruit (the process of opening up the lungs and alveoli is called recruitment, basically recruiting lung tissue and alveoli to do the work of ventilation and perfusion). It is basically like you are continually breathing in and not exhaling, or pushing air out of your lungs. It provides a much more constant pressure than a regular vent, which is less damaging to the lungs because of the more constant and lower pressures and the lower oxygen requirements.
Aaron was also having a problem called "shunting," which is another reason they put him on the high frequency oscillatory ventilator. "Shunting" has to do with the heart. When you are a developing fetus, there is a valve or hole between the two sides of your heart called the Patent Foramen Ovale or PFO. The placenta is supplying the oxygen and removes the carbon dioxide from the fetus's blood, as the fetus isn't breathing or able to do that exchanged in their immature lungs. The PFO allows blood coming from the rest of the body that is oxygen depleted, to bypass the lungs and mix with the blood that is usually oxygen rich in the other chambers of the heart. When you are born, the PFO is supposed to close on it's own (some babies and children end up having surgery to permanently close the hole, since it wasn't able to close on it's on). Aaron's PFO seemed to have closed on its own when he was a baby, but due to his lungs being sick, and the high variable pressures from the vent (and being maxed out on the traditional vent settings) the PFO somehow opened again like a valve. By putting him on the high frequency oscillatory ventilator, they are able to keep the pressures a lot more consistent since he isn't breathing in and out, and he doesn't seem to be shunting anymore. It was very noticeable whenever he got too wakeful or they would move him, as his oxygen saturations would drop, due to the non-oxygenated blood coming from the rest of his body before it goes to the lungs, mixing with the freshly oxygenated blood coming from his lungs. Anyway, sorry if that was a complicated explanation, I don't quite know how else to phrase/explain it.
Had a big family meeting with the doctors (lung transplant pulmonologist, who is also the medical director of Duke's lung transplant program and the one Aaron mainly sees, the MICU doctors and Aaron's nurse this afternoon to discuss the situation and the rapid decline that happened this morning. The doctors just feel like he is septic again (systemic infection/systemic inflammatory response to a very bad infection). He has a very bad MRSA (multi-resistant/methicillin-resistant staph aureus pneumonia/infection. He has also grown out a fungus in his lungs called Paecilomyces lilacinus, but that is sensitive/susceptible to the anti-fungal he is currently on (meaning the antibiotic/anti-fungal is able to to treat the particular bacteria/virus/fungus). They are also now treating the mucoid pseudomonas that grew out of his sinuses with the colistin as I mentioned above, even though they don't believe that it is contributing, but we all figured we might as well try it, we don't have much to lose. He is on a total of at least 6 total IV antibiotics/antivirals/anti-fungals, not to mention several oral antibiotics. He is pretty much being covered for everything, and transplant infectious disease is keeping a close eye on everything, making sure he is covered for just about anything.
They had to stop the inhaled antibiotics when they put him on the oscillator, since there is no way to break the "circuit" to hook them up, as the machine is very sensitive, and anytime you stop the oscillator for suctioning the lungs, bronchs, inhaled antibiotics, you lose some of that lung "recruitment" that I mentioned earlier, and it can actually cause setbacks that may require at least 12 or more hours to get back to where you were, so they try to avoid that at all costs. They do briefly stop and start the oscillator (for about a period of 5 or so seconds) in what's know as a "Recruitment exercise" to try to get more alveoli and lung tissue open and moving air. It seems like they do it once a shift or twice a day, but I'm not positive. Stopping it for a few seconds, is a lot less that stopping for 10+ minutes for suctioning, branching, etc.
They did treat Aaron for possible atypical rejection with 3 days of high dose IV steroids, hoping he would respond like he did in July, but that didn't seem to do much, and possibly made the infection even worse, but we don't know and can't prove that. They figured they had to try something else mid-week since he wasn't making the progress that he needed to be. The first dose actually seemed to help with the fevers and low oxygen sats, they were able to wean down some on the oscillator, but the next two doses didn't do much, and he seemed even to get worse. They are keeping him at a higher dose of steroids now than he normally takes because they have to taper down the steroids, but they are thinking about keeping the dose at 60mg instead of 20mg for the time being to help with any inflammation or possible rejection.
One of the reasons that he is having such a hard time fighting this infection despite the very powerful and numerous antibiotics that are supposed to work for the infections he has, is that he has absolutely no immune system to fight the infection with. The antibiotics can only do so much, and your body has to do the rest. Due to all of the harsh and numerous treatments he has been given for chronic rejection, they have almost completely wiped out his immune system, making it very, very difficult to fight any infections, and can make any small infection turn into sepsis and a life-threatening infection. The steroids are also a rejection treatment/immune suppressant, which makes fighting the infection that much harder, and it could cause a flare-up of an existing infection, or flare-up and cause a secondary infection.
Anyway, I think that that's it. Sorry for the very long and detailed post- with more details than you may want to know, but getting it all out helped me, and I figured this would give you all a thorough update on the situation. Aaron's body just needs to start fighting this very nasty, severe and life-threatening infection, since there really isn't anything they aren't doing or covering him for. We are basically hoping and praying for a miracle, as things really don't look good right now. The doctors are very concerned and frustrated with these downhill slides (well more like downhill leaps or jumps), and hope to stabilize him. They are basically giving him the weekend to see how things go, and if there is no improvement or things are getting worse, then we will meet again Monday, and decisions will have to be made. We are really hoping it doesn't come down to that.
The doctors reiterated today that Aaron is a fighter, very strong and an amazing guy. If anyone can come through this, he can. He isn't at transplant candidate, as he would never survive it, and it's not worth putting him through that right now. Duke has never done a third lung transplant, and not many have been done in the world- a third lung transplant is extremely rare, but the doctor (who is also the medical director/head of the lung transplant program here at Duke), said if they would ever consider doing a third transplant on someone, they would do it for/with Aaron. They know how much he loves life and is willing to do what he needs to do to live and have a good quality of life. Things really aren't looking good right now, but we are holding onto hope, and know that Aaron is strong and a fighter and not ready to give up just yet. He seems to have stabilized some tonight (hoping I am not jinxing myself by saying that), but he is extremely sick- can't get a whole lot sicker. He really needs to not just stabilize but make improvements, no matter how small.
We are praying for that miracle, and the doctors said that's pretty much what we need right now. Please continue to keep Aaron and his family/friends in your thoughts and prayers. Pray and hope for that miracle along with us. Hold onto hope that he can get through this. I have already gone through many stages of grief (anger, bargaining, depression, etc.), and have cried a great deal of tears. You would think after a while you would have nothing left to cry out, but the tears keep coming. We are all so thankful and overwhelmed by the love, support, prayers, thoughts and kind messages you send. It gives us all great comfort from those of you that have reached out and are asking friends and family to pray for Aaron. Aaron has certainly touched a lot of lives and continues to inspire so many, me included. I am blown away by his strength, courage and fight. He is an amazing man, and an amazing husband. I could not ask for a better partner in life, and have been/am so lucky to have him in my life and by my side. He truly is my soul mate and the love of my life, and my heart is just breaking right now. He is my rock, and always knows how to make my world a better and happier place, always the ray of sunshine when things are tough. I am very scared and worried, but holding on to hope and faith, and the strength, love and support from all of you.
We are blessed to have such wonderful people, all of you, in our lives. Situations like this show just how many people are there for you and care about you- wish it didn't take something like this for that. Hold on tight to those you love, hug them, kiss them, and tell them everyday how much you love them and what they mean to you. Aaron and I have always said I love you and given each other a kiss every time we part ways, even for just an hour, because you never know what can happen, and wanted to make sure the other knew how much they were loved. As John and Debra said, I don't want to be macabre, but hold on tight to those you love. I have quickly learned just how unfair life is, and this truly, truly sucks. There are no other words to describe it. Right now I am not OK. The love of my life is fighting for his life, and I feel so powerless and helpless. All I can do is hold his hand, rub his head, talk to him, tell him I love him and to keep fighting/stay strong.
This Mother Teresa quote reminds me so much of Aaron, and he often quotes it to me, " I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Anyway, I will stop writing now. Just feels good to get this all out. Sorry for the long post. I just can't adequately describe or put into words my thoughts and feelings, but getting it all out, not bottling it up inside, is cathartic. Keep hoping and praying for that miracle and some progress. Spending the night in the MICU waiting room just to be close by. We live only 10 minutes away, but right now, it's 10 minutes too far. Thank you all again for the thoughts, prayers, support and love. It means more to all of us than you'll ever know.
I'll leave you with this quote from Christopher Reeve that a friend posted on my Facebook wall today: "A hero is an ordinary individual who finds the strength to preserver and endure in spite of overwhelming obstacles." This truly reminds me of Aaron.
-Kel
P.S. I love you with all of my heart, Aaron T. Sterling. Hang in there and keep on fighting. You have a lot of people who love and care about you. You are an amazing man, and I am the luckiest girl in the world to have you by my side and in my life. Remember the song I have been singing to you "I Won't Let Go" by Rascal Flatts:
Aaron's nurse tonight let me stay almost 3 hours past the MICU visiting hours just sitting with him, holding his hand and telling him how much I and everyone else loves him and to keep up the good fight. He seems to have leveled out a bit tonight. He is on a lot less blood pressure meds (he was put on a second one this morning, and is still on 2, but the dosages of one are a lot less. His blood pH, affected by high carbon dioxide levels, which has been very low, is slowly coming up, allowing the blood pressure meds to work more effectively. He is still having continuous high fevers around 102-103 that even Tylenol isn't doing much to break/bring his temperature down, and they have a cooling blanket on him hoping that will help. I brought up the idea of possibly giving him IV Tylenol (IV Tylenol is actually brand new here in the US- they have been using it in Europe for years now, and it seemed to really help break the high fevers when he got it in July, so we are hoping it will be just as effective now), instead of the oral, since he doesn't seem to be responding, and may not even be absorbing the oral (they crush up the pills, along with his other pills, dilute it in water and put it down the tube he has from his mouth into his stomach. He is on tube feeds through another tube that goes from his mouth into his small intestine- this prevents aspiration/food, stomach acid, fluids from going down into his lungs. He did have a stomach wrap to tighten where the esophagus meets the stomach to prevent acid reflux and aspiration, since both are very damaging to lungs, especially transplanted lungs). We are hoping that the IV Tylenol will be much more effective. They have started him on another IV antibiotic, one they don't use often and especially not in adults because it is so tough on the kidneys and is kind of a drug of last resort. He has cultured mucoid pseudomonas in his sinuses (they aren't convinced that that is the reason he is having fevers of almost 103 or why he has gone downhill today. It may not even be in his lungs or making his sick at all. People with Cystic Fibrosis normally are colonized with some type of pseudomonas, especially because CF causes thick mucous and secretions, particularly in the lungs and sinuses, and due to the think mucus, it is almost impossible to completely get rid of the pseudomonas, and it stays in the body. It doesn't necessarily make you sick or actively infected, but just sits there. Because of a lot of pseudomonas sinus/lung infections/pneumonia, people with CF end up getting treated with several very powerful antibiotics throughout their lifetime, and because they can't completely eradicate the pseudomonas, it builds up resistance, making it more difficult to treat, and sometimes to the point where no antibiotics can effectively treat the infection. Hope that makes sense- been a long day, and I may not be explaining things as well as I could be) that is normally pan-resistant (meaning resistant to all known antibiotics), but they are trying to get sensitivities on it anyway to see if any antibiotics would work that he isn't already on- unlikely. The colistin (antibiotic) can be used for the mucoid pseudomonas. They are giving it to him every other day, trying not to be too tough on his kidneys.
His kidney function is getting worse every day, and today is pretty bad. He is not making a lot of urine, and that concerns them, as his kidneys aren't working like they should. Due to his kidney function and the fact that his proteins are low (allowing fluids to leak out of his blood vessels into his tissues), he is very, very swollen and probably has a good 25 pounds of extra fluid in his tissues, if not more. They are trying to give him diuretics, but he isn't responding as well to them as he has in the past. He did put out a little bit more from the lasix tonight, and they just gave him a pretty big dose, hoping to jump start his kidneys and get some fluid off. If that doesn't work, they may either put him on a diuretic drip or start continuous dialysis over the weekend to get some volume/fluid off of him. Especially with lung infections and lung transplant patients, any extra fluid tends to go directly to the lungs, and they cut the lymphatic/drainage system during transplant, so the lungs aren't able to drain themselves. The fluid can definitely cause problems in his lungs and with his ventilation. As the transplant pulmonologists always say, "Dry lungs are happy lungs." Just because they put him on dialysis for the weekend, doesn't mean that he would necessarily be on it for good if he makes it through this. His kidneys just might need a break and some help for a few days. The other issue with using diuretics is that it can drop his already low blood pressure even more, which would then call for an increase in the meds they are using to increase his blood pressure already. They have to give the body time to shift fluid from his tissues back into his vascular system, after they give the lasix
His last blood gas looked better than this morning's so they are holding tight on the oscillatory vent settings- 60% oxygen and 7 breaths a second/420 breaths a minute, not needing to go up of the settings and support, but not being able to come down anymore either. They have left the mean airway pressure at 26 or so, he needs to be at 20 before they would consider weaning him over to the conventional vent, but that is a while in the future, if he makes it through this (He is on a lot of medication for sedation as well as paralytics- he is requiring a lot of sedation as his body builds up a tolerance to the medications, and it takes a lot to suppress your natural drive to breath. He was still taking breaths on top of the oscillator, and that can be very detrimental for him. As was mentioned in a previous update, because you are getting so many breaths a minute, the oscillator basically holds open the lungs and alveoli, and any "natural" breathing can squeeze those alveoli shut and he an de-recruit (the process of opening up the lungs and alveoli is called recruitment, basically recruiting lung tissue and alveoli to do the work of ventilation and perfusion). It is basically like you are continually breathing in and not exhaling, or pushing air out of your lungs. It provides a much more constant pressure than a regular vent, which is less damaging to the lungs because of the more constant and lower pressures and the lower oxygen requirements.
Aaron was also having a problem called "shunting," which is another reason they put him on the high frequency oscillatory ventilator. "Shunting" has to do with the heart. When you are a developing fetus, there is a valve or hole between the two sides of your heart called the Patent Foramen Ovale or PFO. The placenta is supplying the oxygen and removes the carbon dioxide from the fetus's blood, as the fetus isn't breathing or able to do that exchanged in their immature lungs. The PFO allows blood coming from the rest of the body that is oxygen depleted, to bypass the lungs and mix with the blood that is usually oxygen rich in the other chambers of the heart. When you are born, the PFO is supposed to close on it's own (some babies and children end up having surgery to permanently close the hole, since it wasn't able to close on it's on). Aaron's PFO seemed to have closed on its own when he was a baby, but due to his lungs being sick, and the high variable pressures from the vent (and being maxed out on the traditional vent settings) the PFO somehow opened again like a valve. By putting him on the high frequency oscillatory ventilator, they are able to keep the pressures a lot more consistent since he isn't breathing in and out, and he doesn't seem to be shunting anymore. It was very noticeable whenever he got too wakeful or they would move him, as his oxygen saturations would drop, due to the non-oxygenated blood coming from the rest of his body before it goes to the lungs, mixing with the freshly oxygenated blood coming from his lungs. Anyway, sorry if that was a complicated explanation, I don't quite know how else to phrase/explain it.
Had a big family meeting with the doctors (lung transplant pulmonologist, who is also the medical director of Duke's lung transplant program and the one Aaron mainly sees, the MICU doctors and Aaron's nurse this afternoon to discuss the situation and the rapid decline that happened this morning. The doctors just feel like he is septic again (systemic infection/systemic inflammatory response to a very bad infection). He has a very bad MRSA (multi-resistant/methicillin-resistant staph aureus pneumonia/infection. He has also grown out a fungus in his lungs called Paecilomyces lilacinus, but that is sensitive/susceptible to the anti-fungal he is currently on (meaning the antibiotic/anti-fungal is able to to treat the particular bacteria/virus/fungus). They are also now treating the mucoid pseudomonas that grew out of his sinuses with the colistin as I mentioned above, even though they don't believe that it is contributing, but we all figured we might as well try it, we don't have much to lose. He is on a total of at least 6 total IV antibiotics/antivirals/anti-fungals, not to mention several oral antibiotics. He is pretty much being covered for everything, and transplant infectious disease is keeping a close eye on everything, making sure he is covered for just about anything.
They had to stop the inhaled antibiotics when they put him on the oscillator, since there is no way to break the "circuit" to hook them up, as the machine is very sensitive, and anytime you stop the oscillator for suctioning the lungs, bronchs, inhaled antibiotics, you lose some of that lung "recruitment" that I mentioned earlier, and it can actually cause setbacks that may require at least 12 or more hours to get back to where you were, so they try to avoid that at all costs. They do briefly stop and start the oscillator (for about a period of 5 or so seconds) in what's know as a "Recruitment exercise" to try to get more alveoli and lung tissue open and moving air. It seems like they do it once a shift or twice a day, but I'm not positive. Stopping it for a few seconds, is a lot less that stopping for 10+ minutes for suctioning, branching, etc.
They did treat Aaron for possible atypical rejection with 3 days of high dose IV steroids, hoping he would respond like he did in July, but that didn't seem to do much, and possibly made the infection even worse, but we don't know and can't prove that. They figured they had to try something else mid-week since he wasn't making the progress that he needed to be. The first dose actually seemed to help with the fevers and low oxygen sats, they were able to wean down some on the oscillator, but the next two doses didn't do much, and he seemed even to get worse. They are keeping him at a higher dose of steroids now than he normally takes because they have to taper down the steroids, but they are thinking about keeping the dose at 60mg instead of 20mg for the time being to help with any inflammation or possible rejection.
One of the reasons that he is having such a hard time fighting this infection despite the very powerful and numerous antibiotics that are supposed to work for the infections he has, is that he has absolutely no immune system to fight the infection with. The antibiotics can only do so much, and your body has to do the rest. Due to all of the harsh and numerous treatments he has been given for chronic rejection, they have almost completely wiped out his immune system, making it very, very difficult to fight any infections, and can make any small infection turn into sepsis and a life-threatening infection. The steroids are also a rejection treatment/immune suppressant, which makes fighting the infection that much harder, and it could cause a flare-up of an existing infection, or flare-up and cause a secondary infection.
Anyway, I think that that's it. Sorry for the very long and detailed post- with more details than you may want to know, but getting it all out helped me, and I figured this would give you all a thorough update on the situation. Aaron's body just needs to start fighting this very nasty, severe and life-threatening infection, since there really isn't anything they aren't doing or covering him for. We are basically hoping and praying for a miracle, as things really don't look good right now. The doctors are very concerned and frustrated with these downhill slides (well more like downhill leaps or jumps), and hope to stabilize him. They are basically giving him the weekend to see how things go, and if there is no improvement or things are getting worse, then we will meet again Monday, and decisions will have to be made. We are really hoping it doesn't come down to that.
The doctors reiterated today that Aaron is a fighter, very strong and an amazing guy. If anyone can come through this, he can. He isn't at transplant candidate, as he would never survive it, and it's not worth putting him through that right now. Duke has never done a third lung transplant, and not many have been done in the world- a third lung transplant is extremely rare, but the doctor (who is also the medical director/head of the lung transplant program here at Duke), said if they would ever consider doing a third transplant on someone, they would do it for/with Aaron. They know how much he loves life and is willing to do what he needs to do to live and have a good quality of life. Things really aren't looking good right now, but we are holding onto hope, and know that Aaron is strong and a fighter and not ready to give up just yet. He seems to have stabilized some tonight (hoping I am not jinxing myself by saying that), but he is extremely sick- can't get a whole lot sicker. He really needs to not just stabilize but make improvements, no matter how small.
We are praying for that miracle, and the doctors said that's pretty much what we need right now. Please continue to keep Aaron and his family/friends in your thoughts and prayers. Pray and hope for that miracle along with us. Hold onto hope that he can get through this. I have already gone through many stages of grief (anger, bargaining, depression, etc.), and have cried a great deal of tears. You would think after a while you would have nothing left to cry out, but the tears keep coming. We are all so thankful and overwhelmed by the love, support, prayers, thoughts and kind messages you send. It gives us all great comfort from those of you that have reached out and are asking friends and family to pray for Aaron. Aaron has certainly touched a lot of lives and continues to inspire so many, me included. I am blown away by his strength, courage and fight. He is an amazing man, and an amazing husband. I could not ask for a better partner in life, and have been/am so lucky to have him in my life and by my side. He truly is my soul mate and the love of my life, and my heart is just breaking right now. He is my rock, and always knows how to make my world a better and happier place, always the ray of sunshine when things are tough. I am very scared and worried, but holding on to hope and faith, and the strength, love and support from all of you.
We are blessed to have such wonderful people, all of you, in our lives. Situations like this show just how many people are there for you and care about you- wish it didn't take something like this for that. Hold on tight to those you love, hug them, kiss them, and tell them everyday how much you love them and what they mean to you. Aaron and I have always said I love you and given each other a kiss every time we part ways, even for just an hour, because you never know what can happen, and wanted to make sure the other knew how much they were loved. As John and Debra said, I don't want to be macabre, but hold on tight to those you love. I have quickly learned just how unfair life is, and this truly, truly sucks. There are no other words to describe it. Right now I am not OK. The love of my life is fighting for his life, and I feel so powerless and helpless. All I can do is hold his hand, rub his head, talk to him, tell him I love him and to keep fighting/stay strong.
This Mother Teresa quote reminds me so much of Aaron, and he often quotes it to me, " I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Anyway, I will stop writing now. Just feels good to get this all out. Sorry for the long post. I just can't adequately describe or put into words my thoughts and feelings, but getting it all out, not bottling it up inside, is cathartic. Keep hoping and praying for that miracle and some progress. Spending the night in the MICU waiting room just to be close by. We live only 10 minutes away, but right now, it's 10 minutes too far. Thank you all again for the thoughts, prayers, support and love. It means more to all of us than you'll ever know.
I'll leave you with this quote from Christopher Reeve that a friend posted on my Facebook wall today: "A hero is an ordinary individual who finds the strength to preserver and endure in spite of overwhelming obstacles." This truly reminds me of Aaron.
-Kel
P.S. I love you with all of my heart, Aaron T. Sterling. Hang in there and keep on fighting. You have a lot of people who love and care about you. You are an amazing man, and I am the luckiest girl in the world to have you by my side and in my life. Remember the song I have been singing to you "I Won't Let Go" by Rascal Flatts:
It's like a storm
That cuts a path
It's breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it
Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont
That cuts a path
It's breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it
Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont
Thursday, August 11, 2011
More Bumps in the Road
I figured I would try to give a short synopsis of what's been going on with Aaron for the past few weeks and more detail about what's going on right now.
As most of you know, Aaron just spent six weeks in the hospital. We were home for about 2 weeks before he was re-admitted on Monday. His last hospital stay, he came in, was treated for infection, but despite several broad spectrum antibiotics, he continued having fevers of 102.5 and shortness of breath daily. They did another bronch, and weren't able to figure out what was going on through that. Because they had no idea what was causing his problems, they decided to do an open lung biopsy to get a larger piece of lung tissue and more cultures. They also wanted to try to remove some of the fibrous tissue on his left side in order to allow his left lung (mainly the lower lobe) to expand, and to get some airflow through it. We were hoping that we would get a definite answer for what was going on when the results came in, but the results came back inconclusive. A few days after the open lung biopsy, Aaron's breathing and respiratory status ended up declining to the point of needing to be put on a ventilator. They weren't very optimistic, but after some steroids and IVIG (both treatments for rejection), he started showing some improvement, and was able to get off the ventilator in two days. They believe that he started by having an infection and ended up rejecting both of his lungs (Normally someone who has had a double lung transplant has two lungs from the same donor, and would normally reject both, but where Aaron had a living donor transplant- 2 different donors, and since they only replaced one side when he had the re-transplant, he has two different lungs (one is really only a lobe) from two different donors, so he can reject one and not the other or reject them differently and with different severity), and with the steroids, IVIG and antibiotics, they were able to finally get him off the oxygen and then home. He was very weak and had a lot of recovering to do, but he was doing better. He had started going to pulmonary rehab to work on getting his strength back and to try and recover some lung function. He was able to do three sessions so far (they go from Monday-Friday for 3 hours a day for a total of 23 sessions).
Now to what brought him in this time. He had been doing fairly well for 6 weeks in the hospital. On Thursday, he had some shortness of breath, his lungs sounded wet (like there was fluid in his lungs), and had a low grade fever. He took some Tylenol and lasix (a diuretic) and that seemed to help. He had an ok day on Friday, and then on Saturday, he started getting short of breath and sounded wet again. He didn't have a fever, but he took lasix again (he really has been having a hard time with his kidneys and with fluid going straight to his lungs, so he takes lasix as needed). This time the lasix didn't seem to help much, and the same on Sunday. We decided that we would call his coordinator first thing Monday morning and see what they said. Monday he wasn't doing any better and ended up with another low grade fever. We decided to skip the lasix since it wasn't really making a difference, and we didn't want to dry him out too much. His coordinator had him come in for a bronch to see if they could dilate his airways and figure out what was going on. He was on no oxygen at home and his sats were ok, but by the time we got to the bronch suite his sats dropped into the low 80s (they should ideally be above 93%). They put him on 6 liters of oxygen and went ahead with the bronch, but said they would most likely admit him. After the bronch, he wasn't any better so they admitted him to the normal pulmonary floor where he always is when he is admitted. He was doing ok when we got up there, but over a period of the next 45 minutes he starting with rigors/shaking/chills, went from no fever to 102.5 (taken under his arm, so his fever was higher than that), and went into some respiratory distress. They did a blood gas on him to see why he couldn't breathe and why his sats were so low even with being on a lot of oxygen. His carbon dioxide levels were high, his pH was high and his pO2 (which measures how well the oxygen you are breathing in is attaching to your red blood cells), and that was very low for the amount of oxygen he was on (100% via a non-rebreather face mask). His blood pressure was also quite low. They decided that he was way to sick to be on a regular floor and that he needed to be transferred up to the MICU (Medical ICU). They gave him a small amount of fluid, but that seemed to go to his lungs and so they gave him more lasix. The tylenol started wearing off and he spiked a fever of about 103 (also under his arm), and his breathing was getting more labored. He was very sick. I went out and sat in the waiting room, planning to spend the night there because he was so sick. Around 3:30AM, his nurse came out to get me, and said he needed to talk to me. They were talking about putting him on bi-pap because of his breathing and sats, but as we were talking about it, they said that they were most likely going to have to intubate him, but we could try the bi-pip first, but would still most likely need to intubate, though it was up to him what he wanted to do. After talking about it, Aaron decided to skip the bi-pap and just have them intubate him. He was working so hard to breathe, was just so tired and just couldn't keep breathing that way, and if they were going to have to do it anyway, they might as well just do it. They also had to start him on some medications to raise his blood pressure. Due to the infection they think he has (he is septic, a systemic infection), his blood pressure was bottoming out (60s-40s/40s or so) and they needed to do something to bring it up, and with is fluid sensitivity with fluid going to his lungs, they couldn't just pump him full of fluid. He has a port-a-cath, but they needed more access than that, so they put in a triple lumen IJ (Internal Jugular Center Line), and an arterial line. Once they intubated his blood pressure dropped even more due to sedation and being so sick, and they put him on the maximum dosages of the maximum number of pressers (medications to raise his blood pressure)- 3 different meds, and he was still low. With the IJ line, they are able to check his fluid status and blood volume, and it ideally should be between 10-12, and he was 2, extremely low and dehydrated, so he received well over 8 liters of fluid to try to correct that, and thankfully it is now in the normal range. His kidneys weren't producing much, and still aren't. They are talking about now trying to get some of that fluid off of him because he may have gotten too much. Tuesday morning was very touch and go. Between his blood pressure, fluid status, and needing to be on maximum vent settings/support and still not satting where he needed to be. They said that he is much, much sicker than even last time when he was on the vent and not doing well. Unfortunately the cultures they got from the bronch and the blood and urine didn't grow anything. They know that he has an infection, but they can't seem to pinpoint what it is. His severe immune suppressed/compromised status makes it tough for them to grow much.
He has definitely made quite a few gains over the past couple of days. By Tuesday late morning, he was down to 2 blood pressure medications, and then last night they stopped another. He may have to go back on the second, if they decide to give him the diuretics, because that will drop his blood pressure. He is still on the other blood pressure med, but that is ok for now. He is no longer on the maximum vent settings, but he is still on a lot of support. They are trying to lighten the sedation so that he is aware and awake, and they want physical therapy coming in and working with him. They expect that he will be on the vent through at least the weekend, and are hoping he could come off by Monday, but if not they may do a tracheotomy in his neck and would ventilate through that so he could get up and waking. They are hoping he will be more responsive by the end of the day (he tries to open his eyes, raises his eyebrows, can turn his head towards sound and squeezes your hands sometimes. He is still very sleepy and doesn't always respond but he is definitely more responsive now). He is making progress and going in the right direction.
I finally went home last night. I had been staying in the hospital since Monday afternoon, and spent two nights in the waiting room, but he was stable enough last night for me to feel comfortable going home, getting a shower and some sleep. Looking forward to him being more awake and able to communicate some. With how his kidneys are doing, it could take a while for the sedation to clear out of his body. He is definitely a fighter! I'll try to keep updating as we go along. It's been a long few days and our focus has really been on him. Anyone has any questions, feel free to ask! Hope all of this makes sense. Things are improving, slowly and baby steps, but we are going in the right direction. Thanks to everyone for the love, support and messages. They mean a lot to all of us! Sorry for the length of the post, but I wanted to let everyone know what was going on!
As most of you know, Aaron just spent six weeks in the hospital. We were home for about 2 weeks before he was re-admitted on Monday. His last hospital stay, he came in, was treated for infection, but despite several broad spectrum antibiotics, he continued having fevers of 102.5 and shortness of breath daily. They did another bronch, and weren't able to figure out what was going on through that. Because they had no idea what was causing his problems, they decided to do an open lung biopsy to get a larger piece of lung tissue and more cultures. They also wanted to try to remove some of the fibrous tissue on his left side in order to allow his left lung (mainly the lower lobe) to expand, and to get some airflow through it. We were hoping that we would get a definite answer for what was going on when the results came in, but the results came back inconclusive. A few days after the open lung biopsy, Aaron's breathing and respiratory status ended up declining to the point of needing to be put on a ventilator. They weren't very optimistic, but after some steroids and IVIG (both treatments for rejection), he started showing some improvement, and was able to get off the ventilator in two days. They believe that he started by having an infection and ended up rejecting both of his lungs (Normally someone who has had a double lung transplant has two lungs from the same donor, and would normally reject both, but where Aaron had a living donor transplant- 2 different donors, and since they only replaced one side when he had the re-transplant, he has two different lungs (one is really only a lobe) from two different donors, so he can reject one and not the other or reject them differently and with different severity), and with the steroids, IVIG and antibiotics, they were able to finally get him off the oxygen and then home. He was very weak and had a lot of recovering to do, but he was doing better. He had started going to pulmonary rehab to work on getting his strength back and to try and recover some lung function. He was able to do three sessions so far (they go from Monday-Friday for 3 hours a day for a total of 23 sessions).
Now to what brought him in this time. He had been doing fairly well for 6 weeks in the hospital. On Thursday, he had some shortness of breath, his lungs sounded wet (like there was fluid in his lungs), and had a low grade fever. He took some Tylenol and lasix (a diuretic) and that seemed to help. He had an ok day on Friday, and then on Saturday, he started getting short of breath and sounded wet again. He didn't have a fever, but he took lasix again (he really has been having a hard time with his kidneys and with fluid going straight to his lungs, so he takes lasix as needed). This time the lasix didn't seem to help much, and the same on Sunday. We decided that we would call his coordinator first thing Monday morning and see what they said. Monday he wasn't doing any better and ended up with another low grade fever. We decided to skip the lasix since it wasn't really making a difference, and we didn't want to dry him out too much. His coordinator had him come in for a bronch to see if they could dilate his airways and figure out what was going on. He was on no oxygen at home and his sats were ok, but by the time we got to the bronch suite his sats dropped into the low 80s (they should ideally be above 93%). They put him on 6 liters of oxygen and went ahead with the bronch, but said they would most likely admit him. After the bronch, he wasn't any better so they admitted him to the normal pulmonary floor where he always is when he is admitted. He was doing ok when we got up there, but over a period of the next 45 minutes he starting with rigors/shaking/chills, went from no fever to 102.5 (taken under his arm, so his fever was higher than that), and went into some respiratory distress. They did a blood gas on him to see why he couldn't breathe and why his sats were so low even with being on a lot of oxygen. His carbon dioxide levels were high, his pH was high and his pO2 (which measures how well the oxygen you are breathing in is attaching to your red blood cells), and that was very low for the amount of oxygen he was on (100% via a non-rebreather face mask). His blood pressure was also quite low. They decided that he was way to sick to be on a regular floor and that he needed to be transferred up to the MICU (Medical ICU). They gave him a small amount of fluid, but that seemed to go to his lungs and so they gave him more lasix. The tylenol started wearing off and he spiked a fever of about 103 (also under his arm), and his breathing was getting more labored. He was very sick. I went out and sat in the waiting room, planning to spend the night there because he was so sick. Around 3:30AM, his nurse came out to get me, and said he needed to talk to me. They were talking about putting him on bi-pap because of his breathing and sats, but as we were talking about it, they said that they were most likely going to have to intubate him, but we could try the bi-pip first, but would still most likely need to intubate, though it was up to him what he wanted to do. After talking about it, Aaron decided to skip the bi-pap and just have them intubate him. He was working so hard to breathe, was just so tired and just couldn't keep breathing that way, and if they were going to have to do it anyway, they might as well just do it. They also had to start him on some medications to raise his blood pressure. Due to the infection they think he has (he is septic, a systemic infection), his blood pressure was bottoming out (60s-40s/40s or so) and they needed to do something to bring it up, and with is fluid sensitivity with fluid going to his lungs, they couldn't just pump him full of fluid. He has a port-a-cath, but they needed more access than that, so they put in a triple lumen IJ (Internal Jugular Center Line), and an arterial line. Once they intubated his blood pressure dropped even more due to sedation and being so sick, and they put him on the maximum dosages of the maximum number of pressers (medications to raise his blood pressure)- 3 different meds, and he was still low. With the IJ line, they are able to check his fluid status and blood volume, and it ideally should be between 10-12, and he was 2, extremely low and dehydrated, so he received well over 8 liters of fluid to try to correct that, and thankfully it is now in the normal range. His kidneys weren't producing much, and still aren't. They are talking about now trying to get some of that fluid off of him because he may have gotten too much. Tuesday morning was very touch and go. Between his blood pressure, fluid status, and needing to be on maximum vent settings/support and still not satting where he needed to be. They said that he is much, much sicker than even last time when he was on the vent and not doing well. Unfortunately the cultures they got from the bronch and the blood and urine didn't grow anything. They know that he has an infection, but they can't seem to pinpoint what it is. His severe immune suppressed/compromised status makes it tough for them to grow much.
He has definitely made quite a few gains over the past couple of days. By Tuesday late morning, he was down to 2 blood pressure medications, and then last night they stopped another. He may have to go back on the second, if they decide to give him the diuretics, because that will drop his blood pressure. He is still on the other blood pressure med, but that is ok for now. He is no longer on the maximum vent settings, but he is still on a lot of support. They are trying to lighten the sedation so that he is aware and awake, and they want physical therapy coming in and working with him. They expect that he will be on the vent through at least the weekend, and are hoping he could come off by Monday, but if not they may do a tracheotomy in his neck and would ventilate through that so he could get up and waking. They are hoping he will be more responsive by the end of the day (he tries to open his eyes, raises his eyebrows, can turn his head towards sound and squeezes your hands sometimes. He is still very sleepy and doesn't always respond but he is definitely more responsive now). He is making progress and going in the right direction.
I finally went home last night. I had been staying in the hospital since Monday afternoon, and spent two nights in the waiting room, but he was stable enough last night for me to feel comfortable going home, getting a shower and some sleep. Looking forward to him being more awake and able to communicate some. With how his kidneys are doing, it could take a while for the sedation to clear out of his body. He is definitely a fighter! I'll try to keep updating as we go along. It's been a long few days and our focus has really been on him. Anyone has any questions, feel free to ask! Hope all of this makes sense. Things are improving, slowly and baby steps, but we are going in the right direction. Thanks to everyone for the love, support and messages. They mean a lot to all of us! Sorry for the length of the post, but I wanted to let everyone know what was going on!
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