When the cardiologists at Texas Children’s read Lilly’s echocardiogram, they did not see any aortic insufficiency. This is a different finding from both of her previous studies (the one from our cardiologist in Greenville in April and the one from MUSC in May).
Given those findings, Dr. Fraser told us that he would not recommend surgical closure at this time. Our cardiologist agrees with this management plan. The problem is that not we have conflicting information and we need to make sure that we truly understand what is going on with Lilly’s heart.
Our cardiologist (Dr. Raunikar) has requested a copy of the images from the echocardiogram that was performed in Houston, and he will re-read it for himself. He also wants to see Lilly in his office next week so that he can repeat another echocardiogram.
The team in Houston was able to review the images from her first study in Greenville, and I sent copies of the images from MUSC yesterday. They will present Lilly’s case at an interdisciplinary conference on Monday, July 11. This meeting will include all of the cardiothoracic surgeons as well as many cardiologists. We are eagerly waiting to hear their formal recommendation.
Of course we are praying that Lilly will not need surgery.
Saturday, July 3, 2010
I'd forgotten how BIG Texas is ...
Texas Children’s Hospital is HUGE. Of course, that is part of the reason we wanted to go for a consultation, but it is really an amazing place to visit.
We started our day on the 20th floor of the West Tower in the Echo Suite. The waiting room was about 4x larger than the office in Charleston at MUSC. We had our echocardiogram, and then met Nichole for a tour of the facility.
The operating rooms and PCICU are on the 17th floor of the West Tower, and the facilities for families are really nice. There are 22 beds in the PCICU, all of them are private and all of them have windows (compared with only 4 or 6 private beds at MUSC – and only half with windows).
The visiting policies are a little more liberal than MUSC; they permit families to stay at the bedside during shift changes. The “no sleeping” in the PCICU rule is the same, but the waiting room outside the PCICU has kitchen and shower facilities so it is a little more humane.
The Ronald McDonald House (which provides a free place to stay for parents of hospitalized children) is located on the 4th floor of the hospital – so if we have a room there the night after her surgery, we can run take an elevator downstairs to lay down for a few hours (swapping off) and come right back up. The RMDH in Charleston is off-campus and would take much longer to travel back and forth.
We were also able to see the regular cardiac floor at TCH, which we did not see in Charleston. All of the rooms are private, and have couches that pull out into full-size beds so both parents can stay in the rooms. They all have DVD players and Playstations; there is a large lending library that includes books, games and DVDs on the 16th floor.
I told Patrick it felt a little like Disney World (I’m not sure what Charleston would be in that analogy). We just had the feeling that this was a very big, very special, very well-run pediatric hospital.
We started our day on the 20th floor of the West Tower in the Echo Suite. The waiting room was about 4x larger than the office in Charleston at MUSC. We had our echocardiogram, and then met Nichole for a tour of the facility.
The operating rooms and PCICU are on the 17th floor of the West Tower, and the facilities for families are really nice. There are 22 beds in the PCICU, all of them are private and all of them have windows (compared with only 4 or 6 private beds at MUSC – and only half with windows).
The visiting policies are a little more liberal than MUSC; they permit families to stay at the bedside during shift changes. The “no sleeping” in the PCICU rule is the same, but the waiting room outside the PCICU has kitchen and shower facilities so it is a little more humane.
The Ronald McDonald House (which provides a free place to stay for parents of hospitalized children) is located on the 4th floor of the hospital – so if we have a room there the night after her surgery, we can run take an elevator downstairs to lay down for a few hours (swapping off) and come right back up. The RMDH in Charleston is off-campus and would take much longer to travel back and forth.
We were also able to see the regular cardiac floor at TCH, which we did not see in Charleston. All of the rooms are private, and have couches that pull out into full-size beds so both parents can stay in the rooms. They all have DVD players and Playstations; there is a large lending library that includes books, games and DVDs on the 16th floor.
I told Patrick it felt a little like Disney World (I’m not sure what Charleston would be in that analogy). We just had the feeling that this was a very big, very special, very well-run pediatric hospital.
Monday, June 14, 2010
"How is Lilly?"
I've had so many people asking how Lilly is doing. As you can see in this picture, she is having a great summer. She is learning how to swim, taking gymnastic lessons, and doing all the things healthy 3-year-olds do. Our cardiologist told us that Lilly's type of heart problem is one of the hardest things for parents to understand. Lilly looks great! Lilly feels good! If she had more serious congenital heart disease -- the kind that makes kids turn blue or pass out, or somehow limits their activity -- it would be much easier for us to understand why such a risky surgery is important. In Lilly's case, closing her VSD now will prevent valve damage in the future that could lead to heart failure. It's also a much more complicated surgery to replace a valve than just to patch a hole. It is a true case of an ounce of prevention being worth a pound of cure.
So ... until we have our surgery date, we will stick with the swim lessons and summer play dates.
Sunday, May 30, 2010
Heading to Houston on June 27
Our consultation at the Texas Children's Heart Center in Houston has been scheduled for Monday, June 28. We're only planning on staying one night, although I would love to stay longer to see old friends and shop!
Lilly is coming with us, and our first appointment is at 11 am for another echocardiogram to confirm the findings of the other two. We will have the opportunity of touring the facility with one of their child life specialists and at 1:45 we will meet with Dr. Fraser.
The advantages of taking Lilly to a larger center include:
Lilly is coming with us, and our first appointment is at 11 am for another echocardiogram to confirm the findings of the other two. We will have the opportunity of touring the facility with one of their child life specialists and at 1:45 we will meet with Dr. Fraser.
Dr. Charles Fraser received a bachelor’s degree with honors in mathematics from The University of Texas at Austin in 1980 and was a member of the Southwest Conference Champion varsity tennis team in 1977. He received his medical degree in 1984 from The University of Texas Medical Branch in Galveston, where he was elected into the Alpha Omega Alpha medical honor society. His postgraduate residency education was at The Johns Hopkins Hospital in Baltimore, Maryland, where he specialized in general, cardiothoracic and thoracic transplant surgery.
Dr. Fraser completed fellowships in pediatric cardiac surgery at The Royal Children’s Hospital in Melbourne, Australia, cardiac transplant research at The Johns Hopkins Hospital and cardiovascular surgery at the Texas Heart Institute in Houston, Texas. After joining the faculty at the Cleveland Clinic Foundation, he was recruited to Baylor College of Medicine and Texas Children’s Hospital in 1995 to establish a new, focused congenital heart surgery unit. Since that time, he and his team have performed over 10,000 congenital cardiac repairs and related surgeries in children and adults.
Dr. Fraser maintains an active research program with specific interests in congenital heart surgical outcomes, transplantation, mechanical circulatory support, brain protection, and bioengineering. Dr. Fraser has contributed over 150 journal articles, chapters and textbooks to the medical literature and made more than 140 presentations to professional audiences. Dr. Fraser and his wife, Helen, have been blessed by 26 years of marriage and have four children: Laura, Charlie, Gracie and Will.We already know that they will recommend surgical repair of her VSD, so we aren't looking for a traditional second opinion. Texas Children's has an international reputation for excellence in Pediatric Cardiovascular Surgery, and we want to understand the benefits for taking Lilly to a Center of Excellence. We are looking forward to seeing the facility for ourselves, and meeting team-members face to face.
The advantages of taking Lilly to a larger center include:
- Higher volume of cases means more experience for not only the surgeon but also the rest of the team that will be caring for Lilly, including the nurses, perfusionists, respiratory therapists, anesthesiologists. That can translate into faster response to complications and better outcomes.
- The possibility that we will be "just a number," and not recieve the same personalized attention we would closer to home
- We'll be stuck in Houston for at least a week after hospital discharge, until Lilly gets clearance to travel. That means we will be away from everything familiar while she is feeling her worst.
I think we will be choosing between two good options, and I hope our choice will be clear after our consultation.
Sunday, May 23, 2010
Consultation with Dr. Scott Bradley (pediatric cardiothoracic surgeon) at MUSC
On Thursday, May 20, Patrick, Lilly and I drove to Charleston to meet with the Pediatric Heart Team at MUSC. http://www.musckids.com/heart/
We started our visit with another echocardiogram for our official second opinion. Karen, our echo tech, was amazing. She told us that has 22 years of experience with pediatric echocardiology, and it showed. It really helped me to understand the location of the VSD and the changes it was causing to the aortic valve.
As the echo was ending, we were met by another team member who took us on a tour of the hosptial. She showed us the admitting desk in the main lobby, and explained what we could expect on the morning of surgery. I learned that MUSC has a dedicated Pediatric Cardiac Intensive Care Unit (PCICU), which suprised me. It is a 13 bed unit, with windows by most every bed. The floor plan is open, so the nurses at the desk can see all of the beds all of the time.
Christine, one of the nurses, gave us a tour of the unit. Most likely, Lilly will still be intubated when she comes to the PCICU. She will have a central line, arterial line, chest tube, temporary pacing wires (just in case), and a foley catheter. Children are usually extubated on the day of surgery, but stay overnight in the PCICU. They allow 24 hour visitation, but families are sent out of the unit during shift changes. They do not allow parents to sleep at the bedside, but we would be permitted to stay all night if we are awake (?).
As soon as the endotrachial tube comes out, Lilly will be able to have some ice chips and clear liquids (like popsicles -- her favorite). I asked a lot of questions about pain management, and was reassured to learn from Christine that most kids don't need as much narcotics as I had imagined. Healthy kids, like Lilly, are usually discharged from the PCICU to go to the cardiac floor the day after surgery. The total hospital stay will probably be 5 days.
After seeing the PCICU, we went back to the office to meet with Dr. Bradley. He was very patient and unrushed with us -- much more like the pediatric surgeons I know rather than the thoracic guys. I liked him very much. He agreed with our cardiologist that it is time to repair the VSD. The chance for it closing on its own is low, and we run the risk of permanent damage to her aortic valve if we wait. If that happens, instead of being a simple procedure to close a VSD, it would require a valve replacement.
Dr. Bradley explained some more of the details about the surgery, including the usual post-operative course. I asked a lot of questions about the rest of the OR team, including the anesthesiologist and the perfusionist. He reassured me that for Lilly's procedure we will not require deep hypothermia and they will never have to stop her circulation during the procedure. That means that the risk for brain damage from the bypass machine is much less than it is with some other procedures. Any open heart surgery is risky, but he quoted us <1% risk for death or serious complications.
He has a very close working relationship with our cardiologist in Greenville, and once Lilly is ready for discharge from the hospital they would let us go back home. We can follow-up for our post-operative exams in the cardiologist's office here in our hometown.
We liked Dr. Bradley, the rest of the team, and the facilities at MUSC much more than we thought we would. The ability to load Lilly up in our minivan and drive home after we leave the hospital is very appealing.
It feels like a very big decision, but I think we are choosing between two very good options.
We started our visit with another echocardiogram for our official second opinion. Karen, our echo tech, was amazing. She told us that has 22 years of experience with pediatric echocardiology, and it showed. It really helped me to understand the location of the VSD and the changes it was causing to the aortic valve.
As the echo was ending, we were met by another team member who took us on a tour of the hosptial. She showed us the admitting desk in the main lobby, and explained what we could expect on the morning of surgery. I learned that MUSC has a dedicated Pediatric Cardiac Intensive Care Unit (PCICU), which suprised me. It is a 13 bed unit, with windows by most every bed. The floor plan is open, so the nurses at the desk can see all of the beds all of the time.
Christine, one of the nurses, gave us a tour of the unit. Most likely, Lilly will still be intubated when she comes to the PCICU. She will have a central line, arterial line, chest tube, temporary pacing wires (just in case), and a foley catheter. Children are usually extubated on the day of surgery, but stay overnight in the PCICU. They allow 24 hour visitation, but families are sent out of the unit during shift changes. They do not allow parents to sleep at the bedside, but we would be permitted to stay all night if we are awake (?).
As soon as the endotrachial tube comes out, Lilly will be able to have some ice chips and clear liquids (like popsicles -- her favorite). I asked a lot of questions about pain management, and was reassured to learn from Christine that most kids don't need as much narcotics as I had imagined. Healthy kids, like Lilly, are usually discharged from the PCICU to go to the cardiac floor the day after surgery. The total hospital stay will probably be 5 days.
After seeing the PCICU, we went back to the office to meet with Dr. Bradley. He was very patient and unrushed with us -- much more like the pediatric surgeons I know rather than the thoracic guys. I liked him very much. He agreed with our cardiologist that it is time to repair the VSD. The chance for it closing on its own is low, and we run the risk of permanent damage to her aortic valve if we wait. If that happens, instead of being a simple procedure to close a VSD, it would require a valve replacement.
Scott Bradley, M.D. is an assistant professor of surgery in the Cardiothoracic Surgery department at The Children's Heart Center of South Carolina. Dr. Bradley graduated summa cum laude from Harvard University with a bachelor's degree in1980. After completing his undergraduate degree, Dr. Bradley attended the Harvard Medical School where he received his medical degree in 1985. Dr. Bradley completed his postdoctoral training from 1985-1995. Dr. Bradley completed two residencies, one as a general surgery resident at Massachusetts General Hospital and the other as a cardiothoracic surgery resident at the University of Michigan. Dr. Bradley was also a pediatric cardiac surgery fellow at the University of Michigan in Ann Harbor and a research fellow in fetal and cardiovascular surgery at the University of California in San Francisco. In addition to his education and training, Dr. Bradley is involved in numerous professional societies including the American Association for Thoracic Surgery, Society of Thoracic Surgeons and Charleston County Medical Society. Dr. Bradley also has a number of extramural professional activities, including program committee American Association for Thoracic Surgery and grant reviewer for The Children's Heart Foundation.
Dr. Bradley explained some more of the details about the surgery, including the usual post-operative course. I asked a lot of questions about the rest of the OR team, including the anesthesiologist and the perfusionist. He reassured me that for Lilly's procedure we will not require deep hypothermia and they will never have to stop her circulation during the procedure. That means that the risk for brain damage from the bypass machine is much less than it is with some other procedures. Any open heart surgery is risky, but he quoted us <1% risk for death or serious complications.
He has a very close working relationship with our cardiologist in Greenville, and once Lilly is ready for discharge from the hospital they would let us go back home. We can follow-up for our post-operative exams in the cardiologist's office here in our hometown.
We liked Dr. Bradley, the rest of the team, and the facilities at MUSC much more than we thought we would. The ability to load Lilly up in our minivan and drive home after we leave the hospital is very appealing.
It feels like a very big decision, but I think we are choosing between two very good options.
Saturday, May 15, 2010
Welcome to our blog
On the day she was born, our peditrician heard a murmur and we discovered that Lilly had three small holes in her heart (ventricular septal defects). Most often, these small holes close on their own as children grow.
Over the past three years, two of the three holes have closed. Lilly was scheduled for another follow-up echocardiogram in April, and we were hoping to hear that the last remaining hole was closed.
Instead, we learned that not only is the defect still present, but it is destabilizing her aortic valve (causing aortic insufficiency). Our cardiologist thinks it may be time for surgical closure, in order to protect the valve function.
There is only one Pediatric Heart Center in South Carolina, and therefore we have been referred to see Dr. Scott Bradley at the Medical University of South Carolina in Charleston. My practice routinely refers patients to Dr. Bradley, he has wonderful surgical outcomes, and our cardiologist has a very good relationship with him. We have an appointment on May 20, and will see if he agrees that it is time for surgery.
This has been devastating news for our family. The silver lining has been all of the support, good wishes and prayers that we have already recieved from our friends and family. I know that we won't be able to get through this without your love and friendship.
I've set up this blog so that everyone can stay up to date with Lilly's progress through the pre-operative evaluation, surgery and recovery. We are so grateful that you will be there to share this journey with us.
Subscribe to:
Posts (Atom)