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
Friday, June 14, 2013
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
Sunday, June 2, 2013
"Home" Again, "Home" Again, Jiggity Jig
Tricia was discharged around 3pm today. No chest tubes and only one IV medication every eight hours give her a real sense of freedom. She is still receiving humidified air via an oxygen concentrator when she's at rest, but only to keep her new lungs nice and wet. Sometime in the next few weeks, her doctor will remove her trach and the more than 100 staples that helped close her chest incision.
Thus begins stage two of the transplant recovery. She'll relax for the weekend at the hotel (four laps around the parking lot gets her mile walk in, we discovered tonight) and then back to the grind at Duke's Center For Living on Monday for about five weeks of rehab. Her biggest goals right now are to strengthen her breathing and add some weight (and avoid infection and rejection). Tricia has now lost well over 60 pounds in the past 18 months and is as thin as I've ever seen her, including during her first transplant. She's got a long, hard road ahead of her to get back to where she is feeling healthy, but if anybody can do it, she can.
Nate
Thus begins stage two of the transplant recovery. She'll relax for the weekend at the hotel (four laps around the parking lot gets her mile walk in, we discovered tonight) and then back to the grind at Duke's Center For Living on Monday for about five weeks of rehab. Her biggest goals right now are to strengthen her breathing and add some weight (and avoid infection and rejection). Tricia has now lost well over 60 pounds in the past 18 months and is as thin as I've ever seen her, including during her first transplant. She's got a long, hard road ahead of her to get back to where she is feeling healthy, but if anybody can do it, she can.
Nate
Friday, May 31, 2013
Possible Discharge Saturday
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
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
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