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
Thursday, May 16, 2013
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