I'm reminded of it every day, knowing how radically different the past six years could have been without the gift of Tricia's first donor. Should your family ever come across this blog, please know that we are eternally grateful for that gift. My daughter and I can't imagine life without her.
Nate
Wednesday, April 2, 2014
Wednesday, January 8, 2014
Thursday, January 2, 2014
2013
The year is officially over.
Over the past several days, I've read several updates on Facebook from friends who bemoan how horrible their own 2013 was, and who look forward with hope that 2014 will be better. I guess I'm more of a seasonal person, because at the end of 2013, I find myself looking back on the year, thinking "eh, it wasn't so bad after all." Had you asked me my opinion of the year around mid-May, I would have probably told you how absolutely horrible it had been, but with 7+ months post-transplant behind us, and having been back home now and living as "normal" a life as possible, the year as a whole doesn't feel all that bad. Time heals, it's true.
Tricia is living life as much as possible. She continues to struggle to gain weight...nobody is really sure why at this point, especially since her appetite is healthy. Without any extra pounds on her body, she continues to also be very vulnerable to becoming very sick if she catches anything, as her body really has nothing in reserve for strength, energy and stamina. So, we thank God every day that she had remained relatively healthy this fall and winter so far. We are also thankful that we've only been back to Duke a few times for appointments since arriving home in August, and that all tests have come back negative for rejection and infection.
Gwyneth is loving Kindergarten and learning so much. She has an amazing team of educators who are helping her continue to "catch up" with her classmates and overcome the obstacles placed in her way because of her hearing loss and cerebral palsy.
We spent several days over Christmas break with Tricia's family in NJ/PA, our first trip up north together in over a year. We are reminded every day of Tricia's donor and his/her family, as they are spending this first holiday season without their loved one, and we are always thankful.
Thank you for your continued prayer and support. We are enjoying out time together, spending as much time away from social media as possible, and we thank you for your understanding.
Nate
Over the past several days, I've read several updates on Facebook from friends who bemoan how horrible their own 2013 was, and who look forward with hope that 2014 will be better. I guess I'm more of a seasonal person, because at the end of 2013, I find myself looking back on the year, thinking "eh, it wasn't so bad after all." Had you asked me my opinion of the year around mid-May, I would have probably told you how absolutely horrible it had been, but with 7+ months post-transplant behind us, and having been back home now and living as "normal" a life as possible, the year as a whole doesn't feel all that bad. Time heals, it's true.
Tricia is living life as much as possible. She continues to struggle to gain weight...nobody is really sure why at this point, especially since her appetite is healthy. Without any extra pounds on her body, she continues to also be very vulnerable to becoming very sick if she catches anything, as her body really has nothing in reserve for strength, energy and stamina. So, we thank God every day that she had remained relatively healthy this fall and winter so far. We are also thankful that we've only been back to Duke a few times for appointments since arriving home in August, and that all tests have come back negative for rejection and infection.
Gwyneth is loving Kindergarten and learning so much. She has an amazing team of educators who are helping her continue to "catch up" with her classmates and overcome the obstacles placed in her way because of her hearing loss and cerebral palsy.
We spent several days over Christmas break with Tricia's family in NJ/PA, our first trip up north together in over a year. We are reminded every day of Tricia's donor and his/her family, as they are spending this first holiday season without their loved one, and we are always thankful.
Thank you for your continued prayer and support. We are enjoying out time together, spending as much time away from social media as possible, and we thank you for your understanding.
Nate
Tuesday, October 15, 2013
Five Month Update
It's now been five months since Tricia's second transplant! She continues to remain stable, but has been unable to gain any weight. She had several appointments yesterday (our first time to Duke in a month!!!), and her doctor believes that she should start to gain some weight and feel more energy after the six month mark.
In the meantime, Tricia continues to enjoy life as best she can. Fall is her favorite season, and she's been spending as much time as possible outside with the kids after school. The kids are excited for Halloween, and we're all looking forward to spending more time with family around Thanksgiving and Christmas.
As always, thank you for your prayer and support. God is using your encouragement to sustain Tricia while she patiently waits for the weight and energy to increase.
Nate
In the meantime, Tricia continues to enjoy life as best she can. Fall is her favorite season, and she's been spending as much time as possible outside with the kids after school. The kids are excited for Halloween, and we're all looking forward to spending more time with family around Thanksgiving and Christmas.
As always, thank you for your prayer and support. God is using your encouragement to sustain Tricia while she patiently waits for the weight and energy to increase.
Nate
Monday, September 16, 2013
HOME AT LAST!!!
We are so excited to tell you that we made it home just three days before the first day of school for our kids! We are happy beyond words to be back in our house in time for the kids to start school! We have been insanely busy trying to get our house back in order after being away for over ten months, but we are loving every minute of it!
Tricia continues to get stronger, although she is still having trouble putting on any weight. She is getting her rehab in at a local gym. We are returning to Duke about twice a month for checkups and other appts. Tricia's latest bronch showed that her new lungs are continuing to improve.
Gwyneth is LOVING Kindergarten! She has been talking about it for what seems like forever, and she was so excited the first day. She recognized a few friends the first day and has made several new friends. We're very encouraged to see how much she is learning and growing already!
It's hard to imagine that we've been gone for ten months. Our last memories of being home were from this time of year last year, so everything seems like it just happened yesterday even though it has been an entire year...it's a very odd feeling. So many things have changed while we've been away, including several new neighbors (with kids!) who we are getting to know. We have been able to enjoy a few days at the beach and are catching up with friends. Life is slowly returning to normal.
We have so many people to thank for the past year of our lives, including those of you who continue to read and pray and encourage. This has been, by far, the most difficult part of our journey to date. I'll write more about this later, but while we prayed and hoped, neither Tricia nor I realistically believed that she would survive this past winter and spring. So many obstacles were place in her way, and yet, God continued to bless us far beyond what we could ever deserve. We continue to hold the Duke staff in the highest esteem and are so thankful for their amazing knowledge and care and for the way God used them to bring Tricia back to life.
To Tricia's two donor families, wherever you are, whether you ever read this or not, thank you.
Nate
Tricia continues to get stronger, although she is still having trouble putting on any weight. She is getting her rehab in at a local gym. We are returning to Duke about twice a month for checkups and other appts. Tricia's latest bronch showed that her new lungs are continuing to improve.
Gwyneth is LOVING Kindergarten! She has been talking about it for what seems like forever, and she was so excited the first day. She recognized a few friends the first day and has made several new friends. We're very encouraged to see how much she is learning and growing already!
It's hard to imagine that we've been gone for ten months. Our last memories of being home were from this time of year last year, so everything seems like it just happened yesterday even though it has been an entire year...it's a very odd feeling. So many things have changed while we've been away, including several new neighbors (with kids!) who we are getting to know. We have been able to enjoy a few days at the beach and are catching up with friends. Life is slowly returning to normal.
We have so many people to thank for the past year of our lives, including those of you who continue to read and pray and encourage. This has been, by far, the most difficult part of our journey to date. I'll write more about this later, but while we prayed and hoped, neither Tricia nor I realistically believed that she would survive this past winter and spring. So many obstacles were place in her way, and yet, God continued to bless us far beyond what we could ever deserve. We continue to hold the Duke staff in the highest esteem and are so thankful for their amazing knowledge and care and for the way God used them to bring Tricia back to life.
To Tricia's two donor families, wherever you are, whether you ever read this or not, thank you.
Nate
Tuesday, August 20, 2013
Nearly Home!
We are praying that we receive the news this week that Tricia is free to go home for good. Her staples and trach are out, her strength and breathing continues to improve, and she is finally gaining weight! School starts for our kids August 26, and it has been our goal for the past few months to be home by that date.
Tricia has been scheduled for the nissen fundoplication in late September if it decided that she still needs it, and of course we'll be back to Duke every couple of weeks for appts, but it will be so nice to be back in our own home and getting back to a more "normal" routine after being away for so long.
I'll keep you updated!
Nate
Tricia has been scheduled for the nissen fundoplication in late September if it decided that she still needs it, and of course we'll be back to Duke every couple of weeks for appts, but it will be so nice to be back in our own home and getting back to a more "normal" routine after being away for so long.
I'll keep you updated!
Nate
Saturday, August 3, 2013
August 3 Update
It's been two months out of the hospital now, and Tricia continues to improve a little bit every day. She is able to do all everyday tasks for herself now, which is making her feel more and more confident and "normal". Her strength and breathing continues to improve as well. She has officially "graduated" from her physical therapy, meaning she has completed the required number of days, but she continues to go every day that she is not in clinic until we are released to return home permanently. We have been home every weekend for the past several weeks, and we are hoping that we'll be allowed to be home for good by the start of the school year in a few weeks.
Tricia is scheduled to have her staples removed this week, and is hoping to have her trach removed as well. This past week, she had a study done to find out if she will need the nissen fundoplication surgery in the future to keep her acid reflux from causing damage to her new lungs. We should hear about the results on the study in the next few days.
Nate
Tricia is scheduled to have her staples removed this week, and is hoping to have her trach removed as well. This past week, she had a study done to find out if she will need the nissen fundoplication surgery in the future to keep her acid reflux from causing damage to her new lungs. We should hear about the results on the study in the next few days.
Nate
Thursday, July 11, 2013
Two Month Update
We're nearly at two month post-transplant, and I am sorry I haven't updated in a while. With Tricia feeling strong enough to do more for herself, we finally have our little family back together for good for the first time since October, and we have all been busy just being together.
Tricia continues to avoid all major setbacks. We did find out a few weeks ago that Tricia's left diaphragm was paralyzed during surgery, which is making breathing more difficult than it should be. There is a good chance that it will not fix itself, and surgery has not been discussed, which means she may never experience breathing as fully as she could have with a healthy diaphragm. Along with her already atrophied muscles, her breathing continues to progress very slowly (but we are thankful for the progress!).
Tricia still has her trach, is still on a few breathing treatments, and we're still using a suction pump to help bring up secretions from her lungs. She is still on humidified room air when she sleeps to help keep her lungs moist since she isn't breathing through her mouth/nose. All of these will come to an end soon, but until they do, we will remain in Durham.
Tricia was expecting to have her staples removed this past week, but the surgeon decided to wait a while longer to allow her incision to heal. She was a little disappointed, as removing the nearly 100 staples across her chest will allow her more mobility, but she's tough enough.
We were given permission to travel home the past few weekends. It was AWESOME to be back on the beach for the first time since October and spend some quality time with family and friends. Tricia is about 3/4 of the way to graduating from her physical therapy/rehab, but again, with her recovery starting point at transplant being so low, we don't expect to be home for good before the first of August. Our goal is to be home by the beginning of the school year in mid-August.
All in all, we are very happy with the progress, even though we always want it to move faster. Thank you for your continued prayer!
Nate
Tricia continues to avoid all major setbacks. We did find out a few weeks ago that Tricia's left diaphragm was paralyzed during surgery, which is making breathing more difficult than it should be. There is a good chance that it will not fix itself, and surgery has not been discussed, which means she may never experience breathing as fully as she could have with a healthy diaphragm. Along with her already atrophied muscles, her breathing continues to progress very slowly (but we are thankful for the progress!).
Tricia still has her trach, is still on a few breathing treatments, and we're still using a suction pump to help bring up secretions from her lungs. She is still on humidified room air when she sleeps to help keep her lungs moist since she isn't breathing through her mouth/nose. All of these will come to an end soon, but until they do, we will remain in Durham.
Tricia was expecting to have her staples removed this past week, but the surgeon decided to wait a while longer to allow her incision to heal. She was a little disappointed, as removing the nearly 100 staples across her chest will allow her more mobility, but she's tough enough.
We were given permission to travel home the past few weekends. It was AWESOME to be back on the beach for the first time since October and spend some quality time with family and friends. Tricia is about 3/4 of the way to graduating from her physical therapy/rehab, but again, with her recovery starting point at transplant being so low, we don't expect to be home for good before the first of August. Our goal is to be home by the beginning of the school year in mid-August.
All in all, we are very happy with the progress, even though we always want it to move faster. Thank you for your continued prayer!
Nate
Friday, June 14, 2013
One Month
One month out from transplant today. Tricia continues to slowly improve. We are finally beginning to tell that she is definitely getting a little stronger...she is walking with a little more pep in her step and a bit further every day at physical therapy. Her doctors are satisfied with her progress, and her lungs continue to look good. Her bronch last week showed no signs of rejection, and she is back for another bronch today.
Tricia has had a bit of bleeding from her lungs, and she continues to bring up thick mucus. Her doctors tell us that because she was so weak, her lungs will improve more slowly than most. Her transplant and chest tube incisions are healing well. It will be another few weeks before they remove her staples and her trach.
Her appetite finally began returning a few days ago, and she is able to eat several very small meals a day. She continues to be on tube feeds, but as we've discovered the past several months, she probably won't gain any weight until she really begins eating more. Her body is still healing, using a lot of energy to do so, which means the weight will pick up once the healing process slows down as well.
Tricia will have the gastric emptying study on June 20. This test will determine if she has acid reflux which will determine if she needs a Nissen Fundoplication (what people call a "stomach wrap"). Acid reflux, which can result in acid entering and damaging the lungs, can trigger rejection. Tricia did not need this surgery after her first transplant, and it's possible her rejection was triggered by acid reflux. Most CF transplant patients at Duke need the stomach wrap. If she does need this surgery, it could delay our return home by a few more weeks.
As always, thank you for your continued prayer.
Nate
Tricia has had a bit of bleeding from her lungs, and she continues to bring up thick mucus. Her doctors tell us that because she was so weak, her lungs will improve more slowly than most. Her transplant and chest tube incisions are healing well. It will be another few weeks before they remove her staples and her trach.
Her appetite finally began returning a few days ago, and she is able to eat several very small meals a day. She continues to be on tube feeds, but as we've discovered the past several months, she probably won't gain any weight until she really begins eating more. Her body is still healing, using a lot of energy to do so, which means the weight will pick up once the healing process slows down as well.
Tricia will have the gastric emptying study on June 20. This test will determine if she has acid reflux which will determine if she needs a Nissen Fundoplication (what people call a "stomach wrap"). Acid reflux, which can result in acid entering and damaging the lungs, can trigger rejection. Tricia did not need this surgery after her first transplant, and it's possible her rejection was triggered by acid reflux. Most CF transplant patients at Duke need the stomach wrap. If she does need this surgery, it could delay our return home by a few more weeks.
As always, thank you for your continued prayer.
Nate
Wednesday, June 5, 2013
First Clinic Day
Tricia had her first clinic day today post second transplant. Clinic days typically take all day and consist of blood work, x-ray, breathing tests, blood gas, and a visit with a transplant pulmonologist. Everything continues to look good. The doctor took her off a few meds, which is always nice. Tricia was excited because it's the first time she's been able to have a clini day without the help of a walker or wheelchair in about 8 months.
Of course, the bad part of clinic is that Tricia has to miss a day of physical therapy. Monday and Tuesday were her first two days of PT. She is doing well and working hard, but those first two days have shown just how much muscle and weight she has lost and how long it's going to take her to start feeling good again. It was great to see the friends we've made at the Center For Living, and to see how many patients have been transplanted in the month Tricia was in the hospital.
Tricia continues to receive most of her nutrition through her feeding tube, and because she hasn't eaten well in about eight months and hasn't eaten at all for about a month, it will take a while for her appetite to come back and for her stomach to tolerate big meals. She is sleeping well, and several of the minor issues she has been dealing with for months because of med side-effects and the severity of her declining health have begun to dissipate.
As always, thank you for the prayers, encouragement and positive comments.
Nate
Of course, the bad part of clinic is that Tricia has to miss a day of physical therapy. Monday and Tuesday were her first two days of PT. She is doing well and working hard, but those first two days have shown just how much muscle and weight she has lost and how long it's going to take her to start feeling good again. It was great to see the friends we've made at the Center For Living, and to see how many patients have been transplanted in the month Tricia was in the hospital.
Tricia continues to receive most of her nutrition through her feeding tube, and because she hasn't eaten well in about eight months and hasn't eaten at all for about a month, it will take a while for her appetite to come back and for her stomach to tolerate big meals. She is sleeping well, and several of the minor issues she has been dealing with for months because of med side-effects and the severity of her declining health have begun to dissipate.
As always, thank you for the prayers, encouragement and positive comments.
Nate