If all goes well, Tricia will be discharged tomorrow (Saturday). She has been walking a mile consistently and has all but the last two small chest tubes pulled. She is still in some pain and is still very week, but we're excited about having her "home" with us after a little over a month in the hospital. She'll be back to The Center For Living on Monday to begin her five weeks of physical therapy/rehab, and depending on setbacks and another possible procedure the team may demand, we could be home as early as mid-July.
We are so thankful to God for Tricia's donor and the team at Duke. These lungs seem to be an absolute perfect match for Tricia, and we know that without the amazing surgeons, doctors, nurses and other staff, she would have never made it this far. Tricia still needs prayer, as she's certainly not anywhere near "healthy" as we'd like her to be, but we are excited about how well she is doing and are so thankful for your support.
Nate
Friday, May 31, 2013
Wednesday, May 29, 2013
Continued Progress
A few updates:
Tricia was moved to a bigger room a few days ago. Most of the rooms in the hospital are incredibly small, but four of the rooms on this ward are bigger than the rest. This might not seem like a big deal, but for us it was a huge blessing.
She had her first big bronchoscopy yesterday. She has been having bronchs nearly every day in her room, but they've been short and simple. Yesterday's bronch took place down in the bronch suite downstairs under anesthesia. They took a long look at everything and cleaned the lungs out and took some biopsies to check for rejection. We have yet to hear anything, so we're assuming everything looked good.
Tricia passed her second swallow study this morning, which means she should finally be able to drink liquids and possible some soft foods.
We've been told if xray and blood gasses look good today, they may pull a few more chest tubes. She has four remaining.
When I arrived this morning, Tricia was without an IV poll for the first time in several weeks. She is down to just a few doses of IV meds/antibiotics a day, so she can now go several hours at a time without being connected. Again, might not seem like a big deal, but it means a lot more freedom and mobility for Tricia.
She is still in some considerable pain, mostly due to the remaining chest tubes and the atrophy of her muscles. She is walking a bit further every day, with her best being 14 laps two days ago (yesterday was a wash because of the bronch).
There is also talk of removing her trach before she is discharged. The first transplant, Tricia kept her trach for a few weeks after she was discharged.
In other news, Tricia was the first of around a dozen transplants over the past two weeks. They always seem to come in waves. The surgical team has been busy, and we have seen several friends join us on the stepdown unit, for which we are thankful.
Thank you for your continued prayer!
Nate
Tricia was moved to a bigger room a few days ago. Most of the rooms in the hospital are incredibly small, but four of the rooms on this ward are bigger than the rest. This might not seem like a big deal, but for us it was a huge blessing.
She had her first big bronchoscopy yesterday. She has been having bronchs nearly every day in her room, but they've been short and simple. Yesterday's bronch took place down in the bronch suite downstairs under anesthesia. They took a long look at everything and cleaned the lungs out and took some biopsies to check for rejection. We have yet to hear anything, so we're assuming everything looked good.
Tricia passed her second swallow study this morning, which means she should finally be able to drink liquids and possible some soft foods.
We've been told if xray and blood gasses look good today, they may pull a few more chest tubes. She has four remaining.
When I arrived this morning, Tricia was without an IV poll for the first time in several weeks. She is down to just a few doses of IV meds/antibiotics a day, so she can now go several hours at a time without being connected. Again, might not seem like a big deal, but it means a lot more freedom and mobility for Tricia.
She is still in some considerable pain, mostly due to the remaining chest tubes and the atrophy of her muscles. She is walking a bit further every day, with her best being 14 laps two days ago (yesterday was a wash because of the bronch).
There is also talk of removing her trach before she is discharged. The first transplant, Tricia kept her trach for a few weeks after she was discharged.
In other news, Tricia was the first of around a dozen transplants over the past two weeks. They always seem to come in waves. The surgical team has been busy, and we have seen several friends join us on the stepdown unit, for which we are thankful.
Thank you for your continued prayer!
Nate
Friday, May 24, 2013
(Update) Clotting
7:42pm - Everything went well. The surgeon was able to clean her out and says her lungs are looking good. They were able to reopen a small part of her previous incision. She is in a lot of pain, probably from being bent over backwards again on the table. Praying for good sleep tonight so she can get back to walking and recovering tomorrow.
Tricia is going into the OR around 4pm today for a minor procedure to extract some clots around her lungs. Risks are there, but nothing we're too concerned about. It may take a few hours and if all goes well she'll return to stepdown.
Thank you for your prayers.
Nate
Tricia is going into the OR around 4pm today for a minor procedure to extract some clots around her lungs. Risks are there, but nothing we're too concerned about. It may take a few hours and if all goes well she'll return to stepdown.
Thank you for your prayers.
Nate
Thursday, May 23, 2013
Surgery Info and Game Plan
Here are a few details about the surgery and some info about the game plan, with a few comparisons to her first transplant in 2008.
But first, here's something that I thought was cool. On the days of both the 2008 and 2013 transplants, Tricia was in the same room, 7813, when we received the call and when she was wheeled into the OR, she had the same nurse, BJ, she had the same respiratory therapist, Boyd, we received the initial call at almost the exact same call in the morning and the confirmation call for surgery at almost the exact same time in the afternoon, Dr. Lin was on call for surgery and told us afterward that each surgeries was one of his most difficult. Talk about deja vu!
Surgery was eleven hours, First surgery was nine hours. There was more bleeding because of scar tissue, so the removal of the old lungs took longer.
Tricia was off the vent within a few hours after surgery, and out of ICU within 36 hours. It took her a few days to get off of the vent and over a week to get out of the ICU the first time.
She started with nine chest tubes, and has had three pulled so far. Chest tubes allow all the fluid that accumulates after such a major surgery to drain. There is more bleeding and drainage than the first surgery. Chest tubes cause a lot of pain, so she looks forward to having them pulled, even though the pulling is painful. She has an epidural for pain meds that will probably be removed today or tomorrow.
Tricia is experiencing a lot of nausea, which is slowing her down. She hasn't walked yet today because of it. We're hoping this might go away when they change her pain meds.
She is still on a feeding tube. She passed her first swallow test, but will need to pass another before she can eat or drink anything. She still has her trach, but has a Passy Muir Valve that allows her to speak when she wants. You might remember that she had some nerve damage to her left vocal cord from her first surgery that left her voice very raspy and week...she ended up with an implant that fixed the problem. No problem with her voice this time around.
Tricia is having a bronchoscopy procedure nearly every day in her room to check for infection/rejection and to clear any mucus that she is unable to cough up. She also has an xray and other tests daily. So far, the doctors have seen nothing to be alarmed about.
Gwyneth and I have spent several hours each day with her in her room. Her mother is here as well to be with her. Unlike the first time around, she is able to sleep well alone at night, so we are all getting good sleep back at the hotel every night. She is much more relaxed and less anxious than the first time, most likely due to the fact that she feels so much better.
Tricia is still very week from being in bed and on the vent for the past few weeks. Her progress so far has been very very good, but slow. Compared to the first time, she came out of surgery feeling amazingly good. Everyone is very happy with her progress so far. If all goes well, she'll be out of the hospital within 2-3 weeks after surgery. She was out at three weeks the first time.
Tricia needs to meet four criteria to be discharged:
1) Walking at least one mile daily which is about 21 laps around the stepdown unit. So far she's up to about 6-10 a day.
2) No chest tubes.
3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for.
4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.
Once she is discharged she'll be back to the Center for Living to complete 24 days of physical therapy. Once she completes that, and is deemed healthy enough, we can finally go home!
Nate
But first, here's something that I thought was cool. On the days of both the 2008 and 2013 transplants, Tricia was in the same room, 7813, when we received the call and when she was wheeled into the OR, she had the same nurse, BJ, she had the same respiratory therapist, Boyd, we received the initial call at almost the exact same call in the morning and the confirmation call for surgery at almost the exact same time in the afternoon, Dr. Lin was on call for surgery and told us afterward that each surgeries was one of his most difficult. Talk about deja vu!
Surgery was eleven hours, First surgery was nine hours. There was more bleeding because of scar tissue, so the removal of the old lungs took longer.
Tricia was off the vent within a few hours after surgery, and out of ICU within 36 hours. It took her a few days to get off of the vent and over a week to get out of the ICU the first time.
She started with nine chest tubes, and has had three pulled so far. Chest tubes allow all the fluid that accumulates after such a major surgery to drain. There is more bleeding and drainage than the first surgery. Chest tubes cause a lot of pain, so she looks forward to having them pulled, even though the pulling is painful. She has an epidural for pain meds that will probably be removed today or tomorrow.
Tricia is experiencing a lot of nausea, which is slowing her down. She hasn't walked yet today because of it. We're hoping this might go away when they change her pain meds.
She is still on a feeding tube. She passed her first swallow test, but will need to pass another before she can eat or drink anything. She still has her trach, but has a Passy Muir Valve that allows her to speak when she wants. You might remember that she had some nerve damage to her left vocal cord from her first surgery that left her voice very raspy and week...she ended up with an implant that fixed the problem. No problem with her voice this time around.
Tricia is having a bronchoscopy procedure nearly every day in her room to check for infection/rejection and to clear any mucus that she is unable to cough up. She also has an xray and other tests daily. So far, the doctors have seen nothing to be alarmed about.
Gwyneth and I have spent several hours each day with her in her room. Her mother is here as well to be with her. Unlike the first time around, she is able to sleep well alone at night, so we are all getting good sleep back at the hotel every night. She is much more relaxed and less anxious than the first time, most likely due to the fact that she feels so much better.
Tricia is still very week from being in bed and on the vent for the past few weeks. Her progress so far has been very very good, but slow. Compared to the first time, she came out of surgery feeling amazingly good. Everyone is very happy with her progress so far. If all goes well, she'll be out of the hospital within 2-3 weeks after surgery. She was out at three weeks the first time.
Tricia needs to meet four criteria to be discharged:
1) Walking at least one mile daily which is about 21 laps around the stepdown unit. So far she's up to about 6-10 a day.
2) No chest tubes.
3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for.
4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.
Once she is discharged she'll be back to the Center for Living to complete 24 days of physical therapy. Once she completes that, and is deemed healthy enough, we can finally go home!
Nate
Sunday, May 19, 2013
Continued Improvement
Tricia is continuing to do incredibly well. She spent all of yesterday off any kind of supplemental O2, meaning she is breathing completely on her own for the first time since early October. She also walked thee laps around the hall without any O2. Her saturation did drop during the night while she was sleeping, so she may be given a little bit of O2 for the next few nights. She has been sleeping well the past 48 hours, which is very important to recovery. She had one chest tube pulled and has had some of her bandages removed. All tests and bronchs have shown no signs of infection or rejection, which is great news.
Both of our kids are here with us this weekend, so I've been busy. Sorry for not being able to update the blog as often, but I am able to update Twitter and Instagram a few times a day from my phone. Different family members are coming and going to spend time with Tricia, so I've been able to spend extra time with the kids, which has been nice. They like to hang out in Tricia's room and play on the extra large window sill when we're all at the hospital together. We have a great view out the front of the hospital and get to see lots of helicopters and ambulances.
I'll try to post another update ASAP about what needs to happen in the next few weeks for Tricia to be discharged, although it's basically the same as five years ago if you want to go back and read. Thank you for your continued support and prayer!
Nate
Both of our kids are here with us this weekend, so I've been busy. Sorry for not being able to update the blog as often, but I am able to update Twitter and Instagram a few times a day from my phone. Different family members are coming and going to spend time with Tricia, so I've been able to spend extra time with the kids, which has been nice. They like to hang out in Tricia's room and play on the extra large window sill when we're all at the hospital together. We have a great view out the front of the hospital and get to see lots of helicopters and ambulances.
I'll try to post another update ASAP about what needs to happen in the next few weeks for Tricia to be discharged, although it's basically the same as five years ago if you want to go back and read. Thank you for your continued support and prayer!
Nate
Thursday, May 16, 2013
Fast Track
The first few days after Tricia's first transplant were rough for her (if you go back and read my several posts from just after her first surgery in April 2008, you can compare with what's going on now), so we expected the same this time around, especially since the transplant team warned us several times how difficult the second time around can be. BUT, Tricia has amazed everyone these first 36 hours. She was awake and off the vent within hours, and walking by the end of the day. She felt and looked incredibly good from the start and continues to improve, and this afternoon she was moved to the stepdown unit and placed on what they call a "fast track". She is not out of the woods yet, but the past few days have been very promising and we're praying she'll avoid any setbacks and be released from the hospital within the next 2-3 weeks.
The medical team has amazed us once again. Tricia's first surgery five years ago was about nine hours long, and was, according the Dr. Lin, one of the more difficult lung extractions he'd ever performed. This surgery was no less than 11 hours, and Dr. Lin again told us that it was an incredibly difficult extraction. Tricia gave him a big hug today and told him he was her miracle worker. She also told him how thousands of people were praying for him during the surgery, for which he said he was very thankful. So, thank you.
Nate
The medical team has amazed us once again. Tricia's first surgery five years ago was about nine hours long, and was, according the Dr. Lin, one of the more difficult lung extractions he'd ever performed. This surgery was no less than 11 hours, and Dr. Lin again told us that it was an incredibly difficult extraction. Tricia gave him a big hug today and told him he was her miracle worker. She also told him how thousands of people were praying for him during the surgery, for which he said he was very thankful. So, thank you.
Nate
Wednesday, May 15, 2013
Transplant Success
Surgery successful. Went as well as possible. Tricia in ICU. Hard part starts now. Please keep praying.
Nate
Tuesday, May 14, 2013
TRANSPLANT!!!
Tricia rolled into the OR around 5pm. Surgery could take up to 10 hours. Five years ago was 9 hours. Second transplant surgery and recovery is more risky.
Thank you for praying for the donor family tonight, wherever try may be.
Nate
Transplant Call #2
We received another call this morning around 10am. We won't know anything for sure until late afternoon, and I'll be sure to update. Thank you for praying for this donor family.
Nate
Sunday, May 12, 2013
Back in the ICU
As I explained in my last post, Tricia's breathing was becoming more difficult over the week, and around 2am on Saturday morning she was brought back up to the ICU. She was looking and feeling rough, but by Saturday afternoon was doing better. They changed some setting on her vent and gave her a few meds to help her catch up on some sleep. By this morning she was looking and feeling much better, maybe even as good as any tie during her Duke stay the past few weeks. The plans are to try to get her back to stepdown tomorrow if she is the same.
Nate
Nate
Thursday, May 9, 2013
11th Hour...Again
It's very surreal to be here again. So many things are the same. We're just two doors down from the room we lived in for three months while waiting for a transplant just over five years ago, so our view out the window is nearly identical. So many of the staff are the same, hospital food is still iffy, Tricia is experiencing many of the same things she experienced then.
Breathing has slowly been getting more difficult for Tricia since being placed on the vent. The first few days were a relief from the BiPAP, but the past few days have been difficult for her. Sleep has come in short spurts. She began experiencing some chest pain today, haven't heard back about the x-ray yet. We were both reminded of the collapsed lung she experience the day before her first transplant. I'm really not sure how much more she is willing to tolerate before she asks for medication that will put her status on the list in jeopardy. But, the team continues to tell us that she is at the top of the list and to expect lungs at any moment.
Thank you for your continued prayer.
Nate
Breathing has slowly been getting more difficult for Tricia since being placed on the vent. The first few days were a relief from the BiPAP, but the past few days have been difficult for her. Sleep has come in short spurts. She began experiencing some chest pain today, haven't heard back about the x-ray yet. We were both reminded of the collapsed lung she experience the day before her first transplant. I'm really not sure how much more she is willing to tolerate before she asks for medication that will put her status on the list in jeopardy. But, the team continues to tell us that she is at the top of the list and to expect lungs at any moment.
Thank you for your continued prayer.
Nate
Monday, May 6, 2013
Stepdown!
Tricia has been "stable" the past few days, and just a few hours ago she was moved to the stepdown unit. This is a huge blessing. Gwyneth is very excited about seeing mommy in the morning! Other than that, we are just waiting for new lungs.
Nate
Nate
Friday, May 3, 2013
Full of Hope
The past seven days have been quite the roller coaster. Starting with the dry run, a trip to the ER, seeing how quickly Tricia deteriorated, and now seeing how much better she feels on the vent all in the past week.
As I mentioned last night, Tricia was intubated and placed on the ventilator yesterday morning. She was observed for a few hours to make sure she accepted the vent well, and then given a tracheostomy. She was fully awake two hours later and breathing so much easier. Everything went perfectly, and she literally looked and felt like night and day between yesterday morning and last night.
If you were with us five years ago, you'll remember that she was on a vent for about 3 months from Gwyneth's birth until a few days after her transplant. Again, she is unable to speak because she has no air flow through her nose/mouth and through her vocal cords. My lip-reading skills are returning to me quickly.
You might also remember that Duke had very little experience transplanting a ventilated patient five years ago. And, you might remember that Tricia was one of the very first patients at Duke to be placed on a brand new vent setting. It's a setting called Proportional Assist...they told us that they literally wrote the book at Duke using Tricia as a guinea pig. (You can read more about the vent setting HERE.) What we didn't really understand until yesterday is that they now use this vent setting for many of their patients and after Tricia's transplant have had many successful surgeries off the vent and are much more comfortable doing so.
So, when I was guessing that she would be taken off the list, it was a wonderfully ignorant guess. Tricia is now on the top of the list, and we are very confident that she will receive a call for good lungs very soon. She will remain in the ICU at least through the weekend, and we're still praying that she can be moved to our very familiar step-down unit as soon as possible. The staff in this ICU are amazing, but sleep is difficult and visitation is restricted. The two things beyond great medical care that help Tricia the most are sleep and spending time with family and close friends.
Modern medicine and prayer are a powerful combination. Thank you all for your continued prayers. Tricia is still very sick, but we are full of hope, at least for today.
Nate
As I mentioned last night, Tricia was intubated and placed on the ventilator yesterday morning. She was observed for a few hours to make sure she accepted the vent well, and then given a tracheostomy. She was fully awake two hours later and breathing so much easier. Everything went perfectly, and she literally looked and felt like night and day between yesterday morning and last night.
If you were with us five years ago, you'll remember that she was on a vent for about 3 months from Gwyneth's birth until a few days after her transplant. Again, she is unable to speak because she has no air flow through her nose/mouth and through her vocal cords. My lip-reading skills are returning to me quickly.
You might also remember that Duke had very little experience transplanting a ventilated patient five years ago. And, you might remember that Tricia was one of the very first patients at Duke to be placed on a brand new vent setting. It's a setting called Proportional Assist...they told us that they literally wrote the book at Duke using Tricia as a guinea pig. (You can read more about the vent setting HERE.) What we didn't really understand until yesterday is that they now use this vent setting for many of their patients and after Tricia's transplant have had many successful surgeries off the vent and are much more comfortable doing so.
So, when I was guessing that she would be taken off the list, it was a wonderfully ignorant guess. Tricia is now on the top of the list, and we are very confident that she will receive a call for good lungs very soon. She will remain in the ICU at least through the weekend, and we're still praying that she can be moved to our very familiar step-down unit as soon as possible. The staff in this ICU are amazing, but sleep is difficult and visitation is restricted. The two things beyond great medical care that help Tricia the most are sleep and spending time with family and close friends.
Modern medicine and prayer are a powerful combination. Thank you all for your continued prayers. Tricia is still very sick, but we are full of hope, at least for today.
Nate
Thursday, May 2, 2013
A Good Day
Quickly...
Tricia slept well last night and woke up feeling better and breathing more easily. Her team met and decided to go through with the intubation, ventilation and tracheotomy procedures. Everything went smoothly. They assured us that she will remain on the transplant list for the time being. Tricia woke up a few hours later feeling and looking so much better. She is breathing easy on the vent, happy to be still on the list and feeling better, and was even back to exercising within a few hours. They'll have her up and walking tomorrow.
Tricia is still very sick and in a very precarious situation, but today started well and ended better, and we feel that we've been given some extra time and hope. Today was a huge relief. We are beyond thankful for everybody at Duke who is taking such great care of Tricia, and for all of you who are praying for her.
Nate
Tricia slept well last night and woke up feeling better and breathing more easily. Her team met and decided to go through with the intubation, ventilation and tracheotomy procedures. Everything went smoothly. They assured us that she will remain on the transplant list for the time being. Tricia woke up a few hours later feeling and looking so much better. She is breathing easy on the vent, happy to be still on the list and feeling better, and was even back to exercising within a few hours. They'll have her up and walking tomorrow.
Tricia is still very sick and in a very precarious situation, but today started well and ended better, and we feel that we've been given some extra time and hope. Today was a huge relief. We are beyond thankful for everybody at Duke who is taking such great care of Tricia, and for all of you who are praying for her.
Nate
Wednesday, May 1, 2013
ICU Day 3
Tricia is now in her third day in the ICU. Here is a quick list of what we know.
She has remained on the BiPAP. The hope was a little time on the BiPAP would allow her to be able to regain some strength and go back to the nasal cannula, but the few times they have tried, her CO2 levels and blood pressure have jumped back up. With the BiPAP all of her vitals are at a safer level.
All tests have come back negative so far. It's good that she may not have an infection, but not good that we don't yet know what has caused this sudden decline. We are still waiting on a few more tests to come back. The assumption is her rejection has caught up with her and killing her lungs.
She remains on the transplant list, and I've been told she is basically at the top. This is common at Duke, when a tx patient becomes very sick and admitted to the hospital, to bump them to the top of the list to try and receive new lungs ASAP. We could receive a call at any time.
And she needs new lungs right now. Although she is complaining that her breathing is becoming more difficult, she appears to be stable. But if she declines at all, she will most likely be intubated and placed on a ventilator. The chances of coming off the ventilator are slim, and although I haven't talked with the team yet, by guess is they would not be willing to transplant her while she was on the vent. They have an intubation procedure scheduled for 10am tomorrow if it's needed.
Overall, Tricia is unrecognizable compared to a week ago. It's crazy now to think she was walking laps and pumping weights on Friday. She has been sleeping almost constantly since arriving and has only gotten out of bed a few times for a minute or two at a time. Although she is aware of where she is and what's going on, you wouldn't know it by talking with her. She has the BiPAP mask on, so she can't say much, and her mouth is so dry and tongue swollen that it's difficult to understand her anyway. As long as she is sleeping, she is relaxed, but any time that she is awake, she is extremely uncomfortable and anxious.
All of that to say, the chances that Tricia will make it out of the hospital without new lungs are incredibly small. Short of another miracle, either she gets new lungs now, or her struggle will be over soon. We are praying for an immediate call for new lungs and praying that she will stay off the vent for as long as possible so we can continue to pray and wait.
Thank you.
Nate
She has remained on the BiPAP. The hope was a little time on the BiPAP would allow her to be able to regain some strength and go back to the nasal cannula, but the few times they have tried, her CO2 levels and blood pressure have jumped back up. With the BiPAP all of her vitals are at a safer level.
All tests have come back negative so far. It's good that she may not have an infection, but not good that we don't yet know what has caused this sudden decline. We are still waiting on a few more tests to come back. The assumption is her rejection has caught up with her and killing her lungs.
She remains on the transplant list, and I've been told she is basically at the top. This is common at Duke, when a tx patient becomes very sick and admitted to the hospital, to bump them to the top of the list to try and receive new lungs ASAP. We could receive a call at any time.
And she needs new lungs right now. Although she is complaining that her breathing is becoming more difficult, she appears to be stable. But if she declines at all, she will most likely be intubated and placed on a ventilator. The chances of coming off the ventilator are slim, and although I haven't talked with the team yet, by guess is they would not be willing to transplant her while she was on the vent. They have an intubation procedure scheduled for 10am tomorrow if it's needed.
Overall, Tricia is unrecognizable compared to a week ago. It's crazy now to think she was walking laps and pumping weights on Friday. She has been sleeping almost constantly since arriving and has only gotten out of bed a few times for a minute or two at a time. Although she is aware of where she is and what's going on, you wouldn't know it by talking with her. She has the BiPAP mask on, so she can't say much, and her mouth is so dry and tongue swollen that it's difficult to understand her anyway. As long as she is sleeping, she is relaxed, but any time that she is awake, she is extremely uncomfortable and anxious.
All of that to say, the chances that Tricia will make it out of the hospital without new lungs are incredibly small. Short of another miracle, either she gets new lungs now, or her struggle will be over soon. We are praying for an immediate call for new lungs and praying that she will stay off the vent for as long as possible so we can continue to pray and wait.
Thank you.
Nate