Hello to every single one of our friends and family, I am so sorry I haven't had the time to send any emails. I know many of you have been wondering about Lo. I still haven't figured out how to use my email address book up here. But I am going to try.
Most of you have probably heard that Lo's immune system rejected her new lungs. She is back on the Xplant list for a second time. We had to leave Tulsa and relocate to Saint Louis again two weeks ago.
Meanwhile, Don has moved us out of our old house and into our new one. So now we have two addresses again:
Tulsa: 3816 S. Victor/Tulsa/OK/74105
St. Louis: 4535 Forest Park Avenue/Apt # 101/St.Louis/MO/63108
Aunt Jane is taking Organic Chemistry in summer school and babysitting Ollie-Gollie for Lo, an impressive schedule and a HUGE help for all of us!
We are hoping the transplant team will find a match for Lo very soon. This year has been much harder for Lo to endure. The damage that her immune system inflicted upon the donor lungs has caused her to have to use a Bi-pap machine most of the time. This is a non-invasive ventilator that does a portion of the breathing for Lo and gives her muscles a rest.
She has been in the hospital most of the past 2 weeks. Her pulse rate is often very high (like today it was over 130 beats per minute for most of the day...this would be an aerobic rate for most of us!) She is retaining carbon dioxide which can cause severe headache. Her blood pressure is also extremely high - another cause of headache.
Although she is pretty much bedridden, she continues to fight. It has been inspiring to watch her exert so much energy for the past 2 months. I decided it is at least equivalent to any top athlete competing in about 18 Iron Man competitions in a row without one minute's rest!
Last Thursday night, Lo decided she had had enough. "I'm too tired," she said. "I just want to be comfortable." She started refusing treatments. She and I prayed. But I have to say I felt like I was praying, and I wasn't altogether sure Lo was with me. I was also pretty sure God was nowhere to be found. It seemed like my words were totally hollow. This went on well into the night. We cried together. Lo felt very anxious. Between worrying about the future, her surgery, her refusal of treatment, and not being able to breathe, no wonder she was anxious!
At any rate, at 3:45 a.m., I decided I had to leave.
Nothing felt right to me. This wasn't how I would ever have imagined this particular situation. Actually, I had never imagined this situation in spite of the fact that I am well aware of the odds of a CF/lung transplant patient. I realized many years ago, I am better off not dwelling on this kind of situation. I just had to get away, get a few hours sleep, get my head together. I was mad at myself because I felt like I was abandoning Lo. But I also felt claustrophobic.
The next morning by the time I got to the hospital, Lo had already told her doctor and the nurses she was too tired to try anymore. I knew because when I got off the elevator, the nurse greeted me with "Terry, this is NOT Lo's time," she said. She said it with complete conviction, looking straight at me. There was something in her eyes that was like an answered prayer for me. I asked her to call the doctor back because I wanted to talk to him. She had told me if Lo refused treatment, they would have to take her off the transplant list. The doctor came back very shortly. I asked him if there was any reasonable chance for Lo. I knew he wouldn't mince words. These people have to play it very straight. His answer was a definite yes.
I told him if that was his belief, I wouldn't let Lo refuse treatments. I didn't even have to go there. The nurses, Lauren, Erica and Sue, took it upon themselves to lift Lo up from the depths. Lauren had walked in and said, "WHAT'S the deal?" in a tone that was a little militaristic but with a smile. She then said something like, "We are going to kick your butt, Lo. This is boot camp!"
By the end of the afternoon, Erica and Lauren had gotten Lo to do a ton of stuff. They ended the day by giving her a "spa" treatment in which they gave her a bath, washed her hair, until she looked beautiful and fresh and smiling.
Lo's friend, Todd, came up for the weekend. He gave me a much, needed break. While I was gone on Saturday, he said a nurse named Sue came in and continued to "encourage" Lo about her breathing treatments, eating food in addition to getting nourishment via a feeding tube etc. She also said she knows another young woman who is doing great 5 years after having to get a 2nd lung transplant. That was great news for us all!
Today was another challenging one. Apparently, we need to be ready to ride the roller coaster every day. I came home tonight to get a few hours of sleep. I also wanted to write this down for you all and for myself. Julie Allen suggested I should be journaling just as much when things aren't so good. As she said, "Half the walk is in the rain."
Until next time, we appreciate your prayers more than ever.
Love,
The Detrichs
Most of you have probably heard that Lo's immune system rejected her new lungs. She is back on the Xplant list for a second time. We had to leave Tulsa and relocate to Saint Louis again two weeks ago.
Meanwhile, Don has moved us out of our old house and into our new one. So now we have two addresses again:
Tulsa: 3816 S. Victor/Tulsa/OK/74105
St. Louis: 4535 Forest Park Avenue/Apt # 101/St.Louis/MO/63108
Aunt Jane is taking Organic Chemistry in summer school and babysitting Ollie-Gollie for Lo, an impressive schedule and a HUGE help for all of us!
We are hoping the transplant team will find a match for Lo very soon. This year has been much harder for Lo to endure. The damage that her immune system inflicted upon the donor lungs has caused her to have to use a Bi-pap machine most of the time. This is a non-invasive ventilator that does a portion of the breathing for Lo and gives her muscles a rest.
She has been in the hospital most of the past 2 weeks. Her pulse rate is often very high (like today it was over 130 beats per minute for most of the day...this would be an aerobic rate for most of us!) She is retaining carbon dioxide which can cause severe headache. Her blood pressure is also extremely high - another cause of headache.
Although she is pretty much bedridden, she continues to fight. It has been inspiring to watch her exert so much energy for the past 2 months. I decided it is at least equivalent to any top athlete competing in about 18 Iron Man competitions in a row without one minute's rest!
Last Thursday night, Lo decided she had had enough. "I'm too tired," she said. "I just want to be comfortable." She started refusing treatments. She and I prayed. But I have to say I felt like I was praying, and I wasn't altogether sure Lo was with me. I was also pretty sure God was nowhere to be found. It seemed like my words were totally hollow. This went on well into the night. We cried together. Lo felt very anxious. Between worrying about the future, her surgery, her refusal of treatment, and not being able to breathe, no wonder she was anxious!
At any rate, at 3:45 a.m., I decided I had to leave.
Nothing felt right to me. This wasn't how I would ever have imagined this particular situation. Actually, I had never imagined this situation in spite of the fact that I am well aware of the odds of a CF/lung transplant patient. I realized many years ago, I am better off not dwelling on this kind of situation. I just had to get away, get a few hours sleep, get my head together. I was mad at myself because I felt like I was abandoning Lo. But I also felt claustrophobic.
The next morning by the time I got to the hospital, Lo had already told her doctor and the nurses she was too tired to try anymore. I knew because when I got off the elevator, the nurse greeted me with "Terry, this is NOT Lo's time," she said. She said it with complete conviction, looking straight at me. There was something in her eyes that was like an answered prayer for me. I asked her to call the doctor back because I wanted to talk to him. She had told me if Lo refused treatment, they would have to take her off the transplant list. The doctor came back very shortly. I asked him if there was any reasonable chance for Lo. I knew he wouldn't mince words. These people have to play it very straight. His answer was a definite yes.
I told him if that was his belief, I wouldn't let Lo refuse treatments. I didn't even have to go there. The nurses, Lauren, Erica and Sue, took it upon themselves to lift Lo up from the depths. Lauren had walked in and said, "WHAT'S the deal?" in a tone that was a little militaristic but with a smile. She then said something like, "We are going to kick your butt, Lo. This is boot camp!"
By the end of the afternoon, Erica and Lauren had gotten Lo to do a ton of stuff. They ended the day by giving her a "spa" treatment in which they gave her a bath, washed her hair, until she looked beautiful and fresh and smiling.
Lo's friend, Todd, came up for the weekend. He gave me a much, needed break. While I was gone on Saturday, he said a nurse named Sue came in and continued to "encourage" Lo about her breathing treatments, eating food in addition to getting nourishment via a feeding tube etc. She also said she knows another young woman who is doing great 5 years after having to get a 2nd lung transplant. That was great news for us all!
Today was another challenging one. Apparently, we need to be ready to ride the roller coaster every day. I came home tonight to get a few hours of sleep. I also wanted to write this down for you all and for myself. Julie Allen suggested I should be journaling just as much when things aren't so good. As she said, "Half the walk is in the rain."
Until next time, we appreciate your prayers more than ever.
Love,
The Detrichs