Oh CHOP...
We have had an ongoing disagreement with CHOP orthopedics over which pulmonologist we should see. We adore our pulm at Hopkins. She has been with Abby since the beginning and really gets the whole picture. She truly cares about Abby and we feel like she always has her best interests in mind. CHOP ortho really only seems to value the opinion of their own pulmonologist with the Center for Thoracic Insufficiency team. We have nothing against him! He is a very nice guy and very knowledgeable, but we see no need to switch pulmonologists when ours is wonderful and 2 hours closer. We don't care for the attitude of superiority we sometimes feel at CHOP and feel like all of her doctors should work together to give her the best care possible, no matter where they work! (Not to mention, Hopkins is not a two bit hospital!!)
With Abby's recent lung decline and us feeling that a surgical intervention is needed, Abby's pulm has been communicating with CHOP to share her thoughts. CHOP ortho has been very reluctant to do any sort of surgery on Abby since she became septic back in 2017 and had to have the right side hardware removed. He is rightfully concerned about the risk of repeat infections. He said we would really have to convince him that it is needed and that Abby would really have to "deteriorate" in order for him to agree to do it.
Since he said that in July, Abby has had suspected pseudomonas, double lung pnemonia, a hospital stay, is requiring oxygen with any kind of activity, and is still not being about to keep her oxygen levels up with exertion! So....how much more deterioration do we need here?!?! I've called and emailed the team MANY times, but have been really frustrated. Bottom line: CHOP ortho wanted her evaluated by their CTIS pulm before they would see her again. 😒 So we played the game and made an appointment, which ended up being less than a week after our Hopkins pulmonary appointment!
Our Hopkins pulm felt like Abby's lung functioning was the same, based on pulmonary functioning tests. (The same does not mean good....I mean, there's nothing good about any of it.) But Abby has been continuing to struggle maintaining her oxygen levels in PT and PE when she was exerting more energy, even though she is currently on 1 liter of oxygen. She gave us the flexibility to bump her up to 2 liters as needed if she can't keep her oxygen levels up. As I have said before, oxygen is a band-aid for Abby that doesn't actually fix the problem, but it is what she needs right now until the real problem is addressed.
We also looked at her lung CT from her hospital stay in August and our pulm went into great detail about the issues. Abby has some deflation of the lung in her lower lobes (called atelectasis) and some scar tissue from recurrent infections. It's not fabulous. Our pulm feels like we are doing everything we need to do to clear Abby's lungs (SO many daily treatments...) but encouraged me to ask the CHOP pulm if he had anything else he thought we should add. As we have been told before, although Abby's lung functioning is well below the level where they would begin discussing a lung transplant, she is not a candidate for transplant because hers is a structural issue that wouldn't support new lungs properly. Our pulm did make sure to say that while all of this isn't so great and Abby is heading down the path of needing constant mechanical ventilation again, she is also something of a wonder who has surprised us in the past. She described her as amazingly resilient, and I agree!
So....yesterday after school, we traveled to CHOP and spent the night at a hotel to be there for a 9 a.m. appointment. It was a total of 2 hours and 40 minutes that we were there, although we did have to wait a bit to see the doctor. We did pulmonary functioning tests again, which naturally annoyed Abby because she had just done them last week! 😆 The respiratory therapists also did some extra tests to assess the strength of her respiratory muscles to be able to inhale and exhale properly. Those weren't good either, of course!
The CHOP pulm agreed with everything our Hopkins pulm is doing, which is affirming (not that we needed it!) He also feels pretty strongly that she needs some kind of surgical intervention even with the risk of infection. The main issues affecting her lungs are her scoliosis and rib gaps, not the kyphosis. That's a separate issue, but it's not as pressing right now as far as the lungs go. He also noted the partial lung collapse and scarring from repeat infections, which he said will only continue to get worse. Her ribs are collapsed on the right side without any hardware and the airway is being pulled up and over the spine because of the spinal rotation. He thinks getting a rib to rib VEPTR back in on the right side will really help and wants it done sooner than later. He agrees with our Hopkins pulm that Abby is heading toward continuous ventilation (ie: trach and vent) if something isn't done.
The CHOP pulm commented that pulmonary functioning tests are not a valuable assessment tool for Abby because they aren't so valid when the numbers are "this low." He also said in his notes, "At this status, her pulmonary functioning is not a helpful outcome measure and that lack of worsening over the last two years is because her lung volume is effectively as low as it physically can be." That was telling! This was really good information to send to ortho because in the past, they have been basing decisions on her pulmonary functioning tests and not as much on her actual every day function.
He is going to talk to ortho between now and next Monday when we have our ortho team appointment. Hopefully, he will convince the team that a surgical intervention needs to occur. While we hated having to go to CHOP for pulm when we already have a wonderful one, I think ortho will listen to their own pulm much more because he is "one of them."
This isn't the first time we have been in a difficult situation like this with doctors disagreeing on treatment. It is never a fun place to be and you just hope and pray that you are making the right decision for your child. I cannot tell you how much research I have done or how many sleepless nights I have had.
Now that we have two pulmonologists both loudly proclaiming the same concerns and needs, we are ready to take Abby to another orthopedic surgeon for a second opinion if needed. We are hoping that everyone will be on the same page next Monday and we can move forward with a surgical plan. If not, we have two other surgeons in mind. One will require a plane ride, but we will do what is best for our girl! We have found ourselves really missing Dr. Campbell's wisdom and experience during this situation. He was such a brilliant man who truly looked at the whole picture.
So....we would covet your prayers this week as the doctors share opinions and concerns. We truly feel that Abby needs hardware put back in on the right side in order to improve her breathing. We are also concerned about this being done before she gets any worse and isn't able to withstand a big surgery. Ultimately, we know that God holds Abby in the palm of His hand and He has brought us through so much already.
We have had an ongoing disagreement with CHOP orthopedics over which pulmonologist we should see. We adore our pulm at Hopkins. She has been with Abby since the beginning and really gets the whole picture. She truly cares about Abby and we feel like she always has her best interests in mind. CHOP ortho really only seems to value the opinion of their own pulmonologist with the Center for Thoracic Insufficiency team. We have nothing against him! He is a very nice guy and very knowledgeable, but we see no need to switch pulmonologists when ours is wonderful and 2 hours closer. We don't care for the attitude of superiority we sometimes feel at CHOP and feel like all of her doctors should work together to give her the best care possible, no matter where they work! (Not to mention, Hopkins is not a two bit hospital!!)
With Abby's recent lung decline and us feeling that a surgical intervention is needed, Abby's pulm has been communicating with CHOP to share her thoughts. CHOP ortho has been very reluctant to do any sort of surgery on Abby since she became septic back in 2017 and had to have the right side hardware removed. He is rightfully concerned about the risk of repeat infections. He said we would really have to convince him that it is needed and that Abby would really have to "deteriorate" in order for him to agree to do it.
Since he said that in July, Abby has had suspected pseudomonas, double lung pnemonia, a hospital stay, is requiring oxygen with any kind of activity, and is still not being about to keep her oxygen levels up with exertion! So....how much more deterioration do we need here?!?! I've called and emailed the team MANY times, but have been really frustrated. Bottom line: CHOP ortho wanted her evaluated by their CTIS pulm before they would see her again. 😒 So we played the game and made an appointment, which ended up being less than a week after our Hopkins pulmonary appointment!
Our Hopkins pulm felt like Abby's lung functioning was the same, based on pulmonary functioning tests. (The same does not mean good....I mean, there's nothing good about any of it.) But Abby has been continuing to struggle maintaining her oxygen levels in PT and PE when she was exerting more energy, even though she is currently on 1 liter of oxygen. She gave us the flexibility to bump her up to 2 liters as needed if she can't keep her oxygen levels up. As I have said before, oxygen is a band-aid for Abby that doesn't actually fix the problem, but it is what she needs right now until the real problem is addressed.
We also looked at her lung CT from her hospital stay in August and our pulm went into great detail about the issues. Abby has some deflation of the lung in her lower lobes (called atelectasis) and some scar tissue from recurrent infections. It's not fabulous. Our pulm feels like we are doing everything we need to do to clear Abby's lungs (SO many daily treatments...) but encouraged me to ask the CHOP pulm if he had anything else he thought we should add. As we have been told before, although Abby's lung functioning is well below the level where they would begin discussing a lung transplant, she is not a candidate for transplant because hers is a structural issue that wouldn't support new lungs properly. Our pulm did make sure to say that while all of this isn't so great and Abby is heading down the path of needing constant mechanical ventilation again, she is also something of a wonder who has surprised us in the past. She described her as amazingly resilient, and I agree!
So....yesterday after school, we traveled to CHOP and spent the night at a hotel to be there for a 9 a.m. appointment. It was a total of 2 hours and 40 minutes that we were there, although we did have to wait a bit to see the doctor. We did pulmonary functioning tests again, which naturally annoyed Abby because she had just done them last week! 😆 The respiratory therapists also did some extra tests to assess the strength of her respiratory muscles to be able to inhale and exhale properly. Those weren't good either, of course!
The CHOP pulm agreed with everything our Hopkins pulm is doing, which is affirming (not that we needed it!) He also feels pretty strongly that she needs some kind of surgical intervention even with the risk of infection. The main issues affecting her lungs are her scoliosis and rib gaps, not the kyphosis. That's a separate issue, but it's not as pressing right now as far as the lungs go. He also noted the partial lung collapse and scarring from repeat infections, which he said will only continue to get worse. Her ribs are collapsed on the right side without any hardware and the airway is being pulled up and over the spine because of the spinal rotation. He thinks getting a rib to rib VEPTR back in on the right side will really help and wants it done sooner than later. He agrees with our Hopkins pulm that Abby is heading toward continuous ventilation (ie: trach and vent) if something isn't done.
The CHOP pulm commented that pulmonary functioning tests are not a valuable assessment tool for Abby because they aren't so valid when the numbers are "this low." He also said in his notes, "At this status, her pulmonary functioning is not a helpful outcome measure and that lack of worsening over the last two years is because her lung volume is effectively as low as it physically can be." That was telling! This was really good information to send to ortho because in the past, they have been basing decisions on her pulmonary functioning tests and not as much on her actual every day function.
He is going to talk to ortho between now and next Monday when we have our ortho team appointment. Hopefully, he will convince the team that a surgical intervention needs to occur. While we hated having to go to CHOP for pulm when we already have a wonderful one, I think ortho will listen to their own pulm much more because he is "one of them."
This isn't the first time we have been in a difficult situation like this with doctors disagreeing on treatment. It is never a fun place to be and you just hope and pray that you are making the right decision for your child. I cannot tell you how much research I have done or how many sleepless nights I have had.
Now that we have two pulmonologists both loudly proclaiming the same concerns and needs, we are ready to take Abby to another orthopedic surgeon for a second opinion if needed. We are hoping that everyone will be on the same page next Monday and we can move forward with a surgical plan. If not, we have two other surgeons in mind. One will require a plane ride, but we will do what is best for our girl! We have found ourselves really missing Dr. Campbell's wisdom and experience during this situation. He was such a brilliant man who truly looked at the whole picture.
So....we would covet your prayers this week as the doctors share opinions and concerns. We truly feel that Abby needs hardware put back in on the right side in order to improve her breathing. We are also concerned about this being done before she gets any worse and isn't able to withstand a big surgery. Ultimately, we know that God holds Abby in the palm of His hand and He has brought us through so much already.
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