Cataloging these days
Jimmy, Mom, and I have been here (in the hospital) since Thursday. So far, the days been pretty uneventful. Mom and Jimmy have been traveling back and forth from here to the hotel/extended stay place we have for a while. I have to have special permission from my doctor to leave the floor. So, I've been walking the halls and visiting the nurses station from time to time.
I've been getting steroid treatments to grow Ruthie's lungs and hopefully shrink this mass on her right lung. They did find normal lung tissue on the right side. Not much, but enough to be promising. The left one appears to be functional but squished a bunch. So, when they remove the mass during the surgery they will be slowly unsquishing everything else.
Since we've been here, we've met lots of doctors and I must say I am very impressed with their knowledge and confidence. I love my doctors and midwife from Cookeville and Chattanooga...but it is comforting to be learning to love people here too. They are very smart and super involved in each case that they see. We had a consultation meeting with the team of doctors (6 doctors; 2 hi-risk OBs, 2 neonatologists, 2 pediatric surgeons, and a host of nurses) who would be with Ruthie and I on our delivery/surgery day. It was a 2 and 1/2 hour meeting where they explained everything thoroughly and explained the risk. We met again on Friday to sign all the consent forms and meet a few more doctors. The technical diagnosis for Ruthie is still up in the air. They think it is something called a CCAM/CPAM mass. But there is some friendly disagreement among our doctors on the actual diagnosis. They haven't really presented another option that is more likely but the course of treatment is the same for any other type of lung mass. If it is a CPAM, it's the largest one they've seen and it didn't respond to steroids the way it supposed to. (That's why I'm getting another round this weekend.) We're pretty sure the surgery is going down on Tuesday. We'll know for sure after some tests on Monday. But all the consent forms are signed and ready for a Tuesday surgery. I'm ready for it. I think Ruthie is too.
I know you must have lots of questions. I know we do. But to be honest, the answer to most of them is "We don't know." The lung mass/delivery/surgery are all so new and cutting edge that there aren't a ton of statistics on it. They see maybe 10-12 per year here at this hospital and it's by far the most in the country. Every baby responds differently and requires different treatment. Sure, Ruthie's mass is the biggest they've seen but she's almost full term and isn't showing signs of stress. Most babies with this type of mass have other problems (heart or diaphragm). They're masses are smaller but the babies are smaller too. So, if you have questions and I haven't addressed it in the blog, you may assume the answer is "We don't know."
Jimmy was able to pray with/over our doctors and nurses in our meeting on Friday. They were open to it. I think they were honored by it and hopefully they know that we and all of you will be continuing to pray for them. We were talking after the meeting with one of the surgeons. We were talking about pride in doctors and he said pediatrics is pretty different from other specialties. He said.. "It's easy to put your pride aside and ask for others opinions even if you think you are right... because it's for the health of a baby. We all come together around a baby." I like this guy. He and the whole team are a blessing to us.
We are doing well and keeping our heads and hearts up. Thanks for your prayers over the course of the week. I or Jimmy will keep you updated.
Cataloging these days
Jimmy, Mom, and I have been here (in the hospital) since Thursday. So far, the days been pretty uneventful. Mom and Jimmy have been traveling back and forth from here to the hotel/extended stay place we have for a while. I have to have special permission from my doctor to leave the floor. So, I've been walking the halls and visiting the nurses station from time to time.
I've been getting steroid treatments to grow Ruthie's lungs and hopefully shrink this mass on her right lung. They did find normal lung tissue on the right side. Not much, but enough to be promising. The left one appears to be functional but squished a bunch. So, when they remove the mass during the surgery they will be slowly unsquishing everything else.
Since we've been here, we've met lots of doctors and I must say I am very impressed with their knowledge and confidence. I love my doctors and midwife from Cookeville and Chattanooga...but it is comforting to be learning to love people here too. They are very smart and super involved in each case that they see. We had a consultation meeting with the team of doctors (6 doctors; 2 hi-risk OBs, 2 neonatologists, 2 pediatric surgeons, and a host of nurses) who would be with Ruthie and I on our delivery/surgery day. It was a 2 and 1/2 hour meeting where they explained everything thoroughly and explained the risk. We met again on Friday to sign all the consent forms and meet a few more doctors. The technical diagnosis for Ruthie is still up in the air. They think it is something called a CCAM/CPAM mass. But there is some friendly disagreement among our doctors on the actual diagnosis. They haven't really presented another option that is more likely but the course of treatment is the same for any other type of lung mass. If it is a CPAM, it's the largest one they've seen and it didn't respond to steroids the way it supposed to. (That's why I'm getting another round this weekend.) We're pretty sure the surgery is going down on Tuesday. We'll know for sure after some tests on Monday. But all the consent forms are signed and ready for a Tuesday surgery. I'm ready for it. I think Ruthie is too.
I know you must have lots of questions. I know we do. But to be honest, the answer to most of them is "We don't know." The lung mass/delivery/surgery are all so new and cutting edge that there aren't a ton of statistics on it. They see maybe 10-12 per year here at this hospital and it's by far the most in the country. Every baby responds differently and requires different treatment. Sure, Ruthie's mass is the biggest they've seen but she's almost full term and isn't showing signs of stress. Most babies with this type of mass have other problems (heart or diaphragm). They're masses are smaller but the babies are smaller too. So, if you have questions and I haven't addressed it in the blog, you may assume the answer is "We don't know."
Jimmy was able to pray with/over our doctors and nurses in our meeting on Friday. They were open to it. I think they were honored by it and hopefully they know that we and all of you will be continuing to pray for them. We were talking after the meeting with one of the surgeons. We were talking about pride in doctors and he said pediatrics is pretty different from other specialties. He said.. "It's easy to put your pride aside and ask for others opinions even if you think you are right... because it's for the health of a baby. We all come together around a baby." I like this guy. He and the whole team are a blessing to us.
We are doing well and keeping our heads and hearts up. Thanks for your prayers over the course of the week. I or Jimmy will keep you updated.
