We went to CHOP orthopedics today and are still reeling from all of the information. I'll do my best to explain everything, but I'm still processing myself.
When Dr. Anari came in, he didn't beat around the bush. He told us he had spoken with the pulmonologist we saw last week and that it's obvious we are seeing a decline. While the kyphosis looks to be about the same on the xray, there could be subtle changes that could be pushing Abby over the edge, so to speak.
Then he proceeded to tell us that Abby was one of his top two or three patients in terms of difficulty, complexity of the chest wall, and high risk. Everyone has to be good at something, right? 😒
He laid out 3 options for us to consider.
1. This is the most aggressive option. Abby would be put in a halo for several months, then she would go into surgery for a removal of a section of her vertebrae. It is called a Vertebral Column Resection and you can read about it here. She would have to be in the hospital for the entire process.This is a HUGE surgery and very risky. It is by far the biggest she has done, and none of them have been a walk in the park. There's a high risk of both paralysis and infection. Dr. Anari encouraged us to go to a doctor in New York City who specializes in this kind of surgery, since he said he only does one or two every few years. I'd heard of this surgeon, but I knew he only took the most complex pediatric patients. Dr. Anari assured us that Abby fell into that category...not sure how I feel about that one. Having this kind of surgery would also mean that Abby's spine would be fused once and for all and she would stop growing. She is currently 45 inches tall. 😭
2. The "middle of the road" option. Dr. Anari would put the VEPTR back in on the right side rib-to-rib to pull her chest wall back out on this side. It would be a bigger surgery than her previous VEPTR insertions because he would be dealing with scar tissue and stiffening of the ribs. There is an additional risk of infection because Abby is prone to them--he gave us a 25% chance of having an infection. His biggest concern with this option is that he isn't sure Abby's lungs can handle any kind of major surgery right now. She may not be able to come off of the vent after surgery because her lungs will be too weak.
3. The conservative route. We could wait and see how Abby does through flu season and hold off on making any decisions until March. This would give Abby's body 6 months to recover from her hospital stay and see if her lungs improve. The risk here is that her lungs don't get better and in fact worsen. Then we will have lost our opportunity to operate.
Dr. Anari knows how much we adored Dr. Campbell and is always quick to acknowledge his brilliance and expertise. When we asked him what he thought Dr. Campbell would have done, he said that he thinks he would have put the VEPTR back in.
So....yeah. There's so much to consider here and it's up to us to decide what is right. We aren't anxious for Abby to have a VCR because it's such a risky surgery and if Dr. Anari isn't sure she can handle a VEPTR reinsertion, the VCR is even harder on the body. It is probably something that needs to be done in the future, but we would love for Abby to grow a bit more before it does. Our hope was always to allow her to finish growing before we did anything that would fuse her entire spine. (She already has 2 short fusions that have caused 8 of her vertebrae to stop growing.) The wait-and-see approach hasn't worked so well for us so far, but the risk of her not being able to handle a VEPTR surgery is kind of nerve-wracking too.
We left the appointment rather in shock and having no idea what we were going to do. The shock wore off on the ride home and I had a sudden and fierce panic attack that I managed to hide from the kids.
Matt and I have talked on and off about it and we know that we want to talk to our pulmonologist about her thoughts on Abby being able to withstand a surgery (and the likelihood of her lungs improving in the next few months). We would also like to meet with the specialist in New York City to get his thoughts on how Abby looks. This is really more to get a feel for future surgeries--we have pretty much decided to wait on the VCR until we really have to do it. We think it's important for him to consult with us now so that we will have a plan for the future.
CHOP has its interdisciplinary meeting with all of the key doctors in the Center for Thoracic Insufficiency at the end of the month. Abby's case is on the schedule to be discussed and Dr. Anari is hoping others can weigh in on the best course of treatment. There just isn't a great answer to this one. We are, however, thankful that Dr. Anari recognized Abby's decline, listened to the pulmonologists' concerns, and came to us with a plan. This is what we were hoping would happen, because we really didn't want to travel to another hospital.
For now, we are praying, consulting, and processing. We will be talking to CHOP soon with what we decide and calling to schedule an appointment with the NYC specialist. Will you please specifically pray:
* That it will be clear which option we need to take.
* That Abby will be safe and healthy, no matter which option we choose.
* That her lungs will improve!!!
* That Abby will trust that we are making the best decision we can for her. She HATES the idea of more surgeries and we don't want her to resent us. We really are trying to do what is best for her.
When Dr. Anari came in, he didn't beat around the bush. He told us he had spoken with the pulmonologist we saw last week and that it's obvious we are seeing a decline. While the kyphosis looks to be about the same on the xray, there could be subtle changes that could be pushing Abby over the edge, so to speak.
Then he proceeded to tell us that Abby was one of his top two or three patients in terms of difficulty, complexity of the chest wall, and high risk. Everyone has to be good at something, right? 😒
He laid out 3 options for us to consider.
1. This is the most aggressive option. Abby would be put in a halo for several months, then she would go into surgery for a removal of a section of her vertebrae. It is called a Vertebral Column Resection and you can read about it here. She would have to be in the hospital for the entire process.This is a HUGE surgery and very risky. It is by far the biggest she has done, and none of them have been a walk in the park. There's a high risk of both paralysis and infection. Dr. Anari encouraged us to go to a doctor in New York City who specializes in this kind of surgery, since he said he only does one or two every few years. I'd heard of this surgeon, but I knew he only took the most complex pediatric patients. Dr. Anari assured us that Abby fell into that category...not sure how I feel about that one. Having this kind of surgery would also mean that Abby's spine would be fused once and for all and she would stop growing. She is currently 45 inches tall. 😭
2. The "middle of the road" option. Dr. Anari would put the VEPTR back in on the right side rib-to-rib to pull her chest wall back out on this side. It would be a bigger surgery than her previous VEPTR insertions because he would be dealing with scar tissue and stiffening of the ribs. There is an additional risk of infection because Abby is prone to them--he gave us a 25% chance of having an infection. His biggest concern with this option is that he isn't sure Abby's lungs can handle any kind of major surgery right now. She may not be able to come off of the vent after surgery because her lungs will be too weak.
3. The conservative route. We could wait and see how Abby does through flu season and hold off on making any decisions until March. This would give Abby's body 6 months to recover from her hospital stay and see if her lungs improve. The risk here is that her lungs don't get better and in fact worsen. Then we will have lost our opportunity to operate.
Dr. Anari knows how much we adored Dr. Campbell and is always quick to acknowledge his brilliance and expertise. When we asked him what he thought Dr. Campbell would have done, he said that he thinks he would have put the VEPTR back in.
So....yeah. There's so much to consider here and it's up to us to decide what is right. We aren't anxious for Abby to have a VCR because it's such a risky surgery and if Dr. Anari isn't sure she can handle a VEPTR reinsertion, the VCR is even harder on the body. It is probably something that needs to be done in the future, but we would love for Abby to grow a bit more before it does. Our hope was always to allow her to finish growing before we did anything that would fuse her entire spine. (She already has 2 short fusions that have caused 8 of her vertebrae to stop growing.) The wait-and-see approach hasn't worked so well for us so far, but the risk of her not being able to handle a VEPTR surgery is kind of nerve-wracking too.
We left the appointment rather in shock and having no idea what we were going to do. The shock wore off on the ride home and I had a sudden and fierce panic attack that I managed to hide from the kids.
Matt and I have talked on and off about it and we know that we want to talk to our pulmonologist about her thoughts on Abby being able to withstand a surgery (and the likelihood of her lungs improving in the next few months). We would also like to meet with the specialist in New York City to get his thoughts on how Abby looks. This is really more to get a feel for future surgeries--we have pretty much decided to wait on the VCR until we really have to do it. We think it's important for him to consult with us now so that we will have a plan for the future.
CHOP has its interdisciplinary meeting with all of the key doctors in the Center for Thoracic Insufficiency at the end of the month. Abby's case is on the schedule to be discussed and Dr. Anari is hoping others can weigh in on the best course of treatment. There just isn't a great answer to this one. We are, however, thankful that Dr. Anari recognized Abby's decline, listened to the pulmonologists' concerns, and came to us with a plan. This is what we were hoping would happen, because we really didn't want to travel to another hospital.
For now, we are praying, consulting, and processing. We will be talking to CHOP soon with what we decide and calling to schedule an appointment with the NYC specialist. Will you please specifically pray:
* That it will be clear which option we need to take.
* That Abby will be safe and healthy, no matter which option we choose.
* That her lungs will improve!!!
* That Abby will trust that we are making the best decision we can for her. She HATES the idea of more surgeries and we don't want her to resent us. We really are trying to do what is best for her.
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