We made it home safely last night and crashed hard! Our Tuesday kick started with a 3:30am shot that I had hoped Owen would sleep through. No such luck. We both were up for good! We had an early morning lab draw at Stanford and that was a bit dramatic, but ended with blood. We made it to Transplant clinic by 8am and it was an informational visit. We met with our NP, our new Social Worker (since our favorite Social Worker, Mary, finally retired), our new Coumadin NP, nutritionist and then Dr Rosenthal.
Breakdown...
Biopsy results came back with 0 rejection.. as always!
We have to look at short and long term treatment plan options. We know that Owen has Coronary Artery disease now, but it's not advanced and he isn't showing symptoms from it. His heart pressures are better than they have been in the past 8 months. With CAD, the heart muscle starts to stiffen and the heart pressures increase significantly, indicating it's time to retransplant. We also know that Owen is still being treated for moderate dysfunction with heart failure medications and his heart hasn't fully recovered from last year. His heart rate is still in the 140-150 range and is causing his oxygen requirements to go up and he burns more energy. We increased his Carvedilol dose to see if it will have an effect on the HR. Another option we have is to switch up his anti rejection meds to Sirolimus which can help with Coronary Artery Disease, but can significantly hinder healing. This is an issue if he requires another heart transplant. More on that in a second. We are already tackling the clotting issue and Owen had another lab draw this morning (three in three days) and we are hoping his levels are close to the target range so we can stop these darn Lovenox shots soon. He says they burn and his poor legs are so sore. He just doesn't have a whole lot of fat anywhere on his body to inject.. poor guy.
As far as looking at the longer term...
Stanford is going to go ahead with starting the process of getting a new transplant evaluation done now. We discussed in depth where we would like to do transplant (here or in Phoenix) and the option of listing at both centers if necessary (if he were to get very sick again). I think the plan is to be prepared and ready for anything because honestly.. in Dr Rosenthal's words.. it's the unicorn in the room. We don't fully understand these zero rejection results, low to no antibodies, great heart pressures, but then we have CAD, depressed cardiac function and a serious biopsy negative rejection episode that was so quickly onset.
I will know more in the upcoming days as the cardiologists, transplant teams and surgeons have time to talk and look through Owen's images.
I did speak in depth with the nutritionist and we are significantly increasing his caloric goals (currently 1400/day). I need to pack some pounds on him, or at least continue to attempt to. If we can't see a significant increase in weight we will do a metabolic test with pulmonology in April when we fly back.
Breakdown...
Biopsy results came back with 0 rejection.. as always!
We have to look at short and long term treatment plan options. We know that Owen has Coronary Artery disease now, but it's not advanced and he isn't showing symptoms from it. His heart pressures are better than they have been in the past 8 months. With CAD, the heart muscle starts to stiffen and the heart pressures increase significantly, indicating it's time to retransplant. We also know that Owen is still being treated for moderate dysfunction with heart failure medications and his heart hasn't fully recovered from last year. His heart rate is still in the 140-150 range and is causing his oxygen requirements to go up and he burns more energy. We increased his Carvedilol dose to see if it will have an effect on the HR. Another option we have is to switch up his anti rejection meds to Sirolimus which can help with Coronary Artery Disease, but can significantly hinder healing. This is an issue if he requires another heart transplant. More on that in a second. We are already tackling the clotting issue and Owen had another lab draw this morning (three in three days) and we are hoping his levels are close to the target range so we can stop these darn Lovenox shots soon. He says they burn and his poor legs are so sore. He just doesn't have a whole lot of fat anywhere on his body to inject.. poor guy.
As far as looking at the longer term...
Stanford is going to go ahead with starting the process of getting a new transplant evaluation done now. We discussed in depth where we would like to do transplant (here or in Phoenix) and the option of listing at both centers if necessary (if he were to get very sick again). I think the plan is to be prepared and ready for anything because honestly.. in Dr Rosenthal's words.. it's the unicorn in the room. We don't fully understand these zero rejection results, low to no antibodies, great heart pressures, but then we have CAD, depressed cardiac function and a serious biopsy negative rejection episode that was so quickly onset.
I will know more in the upcoming days as the cardiologists, transplant teams and surgeons have time to talk and look through Owen's images.
I did speak in depth with the nutritionist and we are significantly increasing his caloric goals (currently 1400/day). I need to pack some pounds on him, or at least continue to attempt to. If we can't see a significant increase in weight we will do a metabolic test with pulmonology in April when we fly back.
Owen is over it all! He has just had a long few days and needs a little bit of a break from it all. We have a week or two of frequent labs and hopefully the shots will end soon. Then we will finally get a little break! Owen's birthday is in two weeks and I know that would be the best gift ever! No pokes, no echos, no biopsy around the corner... I'm just praying this is the outcome. I can't believe how brave he is and how much he has endured in his (almost) 8 short years! Thank you all for the prayers and support. It is nice for me to have the support of other families that have walked this path before us and can give guidance. Thank you all so much!!
4 comments:
Owen--you are amazing!!! You do not know us, but we have been following you for a few months now. You are in our thoughts & prayers!! Hugs, Tara, Todd & Drew Boedigheimer (age 7, HTX 5/26/11) almost 5 years with a new heart & going strong!! Scottsdale, AZ
Lovenox injections are for the birds... They are awful... I have to take them daily for blood clotting issues and they do burn and make the injection site very sore. He has been so brave through everything. Continuing prayers!!!
Love Owen sitting next to his lunch on the bench and the scrunchy face at the end. So glad he was able to bust out of there and go home to recoup and play with lil' bro and be pampered by big sis.... Those are the real medicines that heal :)
I also had to do lovenox injections in the belly 2x/day through 2 pregnancies. They do burn and I found that putting ice on the spot both before and after helped with the burning, bruising, and overall soreness. Owen is such an amazing kid! Praying that you get the answers you want/need!
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