Sofia is doing great and she's back to feeling like herself after her cath. She has been on coumadin for 11 days now and INR has been tested twice. After the first time, she wasn't at a therapeutic level yet, and she was just checked yesterday for the second time and the results weren't back yet. She went back to gymnastics yesterday, which she is allowed to continue. She follows up with Dr. Golden, who did her cath, on Tuesday and she also has an appointment with the gastroenterologist. I think forgot to mention in August that she went to see her for the first time because it was discovered back in June when she was in the hospital that she has gallstones. Dr. Hupertz, the gastroenterologist, will follow her. She's not having symptoms so we will just hope that she continues to not be bothered by them. However, if they do cause a problem they will take out her gallbladder. Hoping it doesn't come to that! Her liver was also enlarged, so they are going to keep an eye on it. Dr. Hupertz's opinion is that if there was some liver congestion after the surgery it could take a few months for it to return to normal. She will have an ultrasound on Tuesday.
Only 3 more weeks until our trip. Have a lot to do before then!
Friday, October 12, 2012
Sunday, October 7, 2012
Heart Cath and Heart Walk
While it's still fresh, I wanted to write about Sofia's heart cath. She went in on Oct. 1st for what was her 4th heart cath. As I've written before, the primary reason she was having this cath is because her left pulmonary artery (PA) has looked narrow in one area. The secondary reason is if there were any collateral vessels, they would be coiled. Her left pulmonary arterty has been worked on before in her Glenn surgery at 6 months old. In her pre-Fontan cath in April, Dr. Golden pointed out a narrow section on 3D imaging, but it was thought to be in a good position that would be right where her Gortex conduit was going in and that would hopefully take care of it. However, in the last few echos in August and September it looked narrow again. Dr. Edwards said she would need a cath to put a stent in it to keep it open, and that we could have it sometime in the winter. We opted to have it done before November, which is when we are going on vacation.
Dr. Hill and Dr. Golden told us on the morning of the cath that it was possible that they could get in there and decide that the PA looked fine and they wouldn't need to do anything. Dr. Golden also said that if he saw collateral vessels he would coil them, but he would not go looking for them. The reason is that there is not definitive research that coiling them is the best thing go do, and there could be a benefit to the body creating this natural "top off." Therefore, if big ones weren't evident, he would leave them alone.
Sofia did well in the morning. Her cath was pushed back and we didn't even have to be there until 9. She mentioned being hungry a couple times, and we promised something to eat when she woke up. She requested French toast. We were able to be with her and take her to the cath lab. She was given versed first, which made her very relaxed. She was under at 11 AM. It was a really long wait. She was extubated at 4:55, so the entire cath took 5 hours. We did get a few updates during the cath, and had learned that she would need the stent.
Dr. Golden came out to talk to us right afterward and gave us the details. Her Fontan pressures were on the higher side at the beginning of the cath, which suggested something was going on. At the end of the cath when the stent was placed the pressures decreased (we were told that pressures tend to be higher at the end due to being under anesthesia that long and the use of the dye), so it was good that her pressures came down. It was obvious the stent was needed and the timing was probably good. There were no collateral vessels that were coiled. Dr. Golden described himself as a perfectionist, and there was one thing that didn't please him. Apparently, the stent can moved when it is being placed. But once it is place, it cannot move. The only way to remove is through surgery. Hers did move when it was placed and it sticks out slightly. We saw it on video. Really wish I could draw a picture here to show it. Essentially, it is not completely off blocking anything, and it is mesh so blood can travel through it, but because of it sticking out he told us she would probably need to be on Coumadin. This wasn't expected, as Dr. Edwards favors aspirin, and we thought we'd have a lot more time before she'd need to be on coumadin. However, we understood the need to for coumadin due to the stent placement, just not thrilled about it.
About half of cardiologists prefer that Fontan patients are on coumadin, so if we had a different cardiologist she might have already been on it. So she is going to have weekly blood draws until a therapeutic level is set and then hopefully about once per month to monitor. I did find out that my insurance company will cover an at home testing kit. I had a long talk with Dr. Edwards on Thursday and felt better about it after talking to him. He has a reassuring effect and are thankful that after things happen that we can call him and have a good explanation of things. She can continue to do gymnastics. We are still going to go to London. I just worry about how active she is and the risk of injury due to falls. We will need to make sure the preschool and our babysitter know that it is important for her to avoid physical contact and notify us of any injuries.
I'm glad that Sofia is recovering well from the cath. When she woke up after surgery, she was so hungry and it definitely made me smile that the first thing she said was request for breakfast. She proceeded to eat a ton of spaghetti and meatballs. She stayed one night at the Clinic and Oliver spent the night with her. Thankfully, they had a private room. It was really hard for me to work the next day and it would have been nice to have one day more off.
We had a nice weekend, and we had the big Congential Heart Walk on Saturday. We really enjoyed it last year and were glad to be doing it again. There were double the walkers this year and the last number I heard was that it raised $70,000, which is great. Mended Little Hearts also had a table set up and we raised some money selling some merchandise. It was a cold, rainy Friday, but it stopped raining for walk day, and then resumed today. The walk reminds me of how lucky we are that 1) Sofia has continued good health, and it is not lost on us that there are lots of families that have more struggles than we do, and 2) that the CHD community is a very caring and close one. Because when things happen that have you down, there are always people to talk with. There were lots of families there that I have come to know over the past year or so, and it is nice that everyone comes together for this annual event. This has been a big heart year for Sofia having 2 heart caths and her Fonan surgery, so we have become more involved. It was also nice to see a good turn out from the health practitioners too - we recognized lots of nurses and doctors there. The support of our family and friends is so touching and it means a lot that we had a lot of support and a lot of walkers for Team Sofia at the walk! Great weekend!
Dr. Hill and Dr. Golden told us on the morning of the cath that it was possible that they could get in there and decide that the PA looked fine and they wouldn't need to do anything. Dr. Golden also said that if he saw collateral vessels he would coil them, but he would not go looking for them. The reason is that there is not definitive research that coiling them is the best thing go do, and there could be a benefit to the body creating this natural "top off." Therefore, if big ones weren't evident, he would leave them alone.
Sofia did well in the morning. Her cath was pushed back and we didn't even have to be there until 9. She mentioned being hungry a couple times, and we promised something to eat when she woke up. She requested French toast. We were able to be with her and take her to the cath lab. She was given versed first, which made her very relaxed. She was under at 11 AM. It was a really long wait. She was extubated at 4:55, so the entire cath took 5 hours. We did get a few updates during the cath, and had learned that she would need the stent.
Dr. Golden came out to talk to us right afterward and gave us the details. Her Fontan pressures were on the higher side at the beginning of the cath, which suggested something was going on. At the end of the cath when the stent was placed the pressures decreased (we were told that pressures tend to be higher at the end due to being under anesthesia that long and the use of the dye), so it was good that her pressures came down. It was obvious the stent was needed and the timing was probably good. There were no collateral vessels that were coiled. Dr. Golden described himself as a perfectionist, and there was one thing that didn't please him. Apparently, the stent can moved when it is being placed. But once it is place, it cannot move. The only way to remove is through surgery. Hers did move when it was placed and it sticks out slightly. We saw it on video. Really wish I could draw a picture here to show it. Essentially, it is not completely off blocking anything, and it is mesh so blood can travel through it, but because of it sticking out he told us she would probably need to be on Coumadin. This wasn't expected, as Dr. Edwards favors aspirin, and we thought we'd have a lot more time before she'd need to be on coumadin. However, we understood the need to for coumadin due to the stent placement, just not thrilled about it.
About half of cardiologists prefer that Fontan patients are on coumadin, so if we had a different cardiologist she might have already been on it. So she is going to have weekly blood draws until a therapeutic level is set and then hopefully about once per month to monitor. I did find out that my insurance company will cover an at home testing kit. I had a long talk with Dr. Edwards on Thursday and felt better about it after talking to him. He has a reassuring effect and are thankful that after things happen that we can call him and have a good explanation of things. She can continue to do gymnastics. We are still going to go to London. I just worry about how active she is and the risk of injury due to falls. We will need to make sure the preschool and our babysitter know that it is important for her to avoid physical contact and notify us of any injuries.
I'm glad that Sofia is recovering well from the cath. When she woke up after surgery, she was so hungry and it definitely made me smile that the first thing she said was request for breakfast. She proceeded to eat a ton of spaghetti and meatballs. She stayed one night at the Clinic and Oliver spent the night with her. Thankfully, they had a private room. It was really hard for me to work the next day and it would have been nice to have one day more off.
We had a nice weekend, and we had the big Congential Heart Walk on Saturday. We really enjoyed it last year and were glad to be doing it again. There were double the walkers this year and the last number I heard was that it raised $70,000, which is great. Mended Little Hearts also had a table set up and we raised some money selling some merchandise. It was a cold, rainy Friday, but it stopped raining for walk day, and then resumed today. The walk reminds me of how lucky we are that 1) Sofia has continued good health, and it is not lost on us that there are lots of families that have more struggles than we do, and 2) that the CHD community is a very caring and close one. Because when things happen that have you down, there are always people to talk with. There were lots of families there that I have come to know over the past year or so, and it is nice that everyone comes together for this annual event. This has been a big heart year for Sofia having 2 heart caths and her Fonan surgery, so we have become more involved. It was also nice to see a good turn out from the health practitioners too - we recognized lots of nurses and doctors there. The support of our family and friends is so touching and it means a lot that we had a lot of support and a lot of walkers for Team Sofia at the walk! Great weekend!
Just one of the Hazel siblings missing... Next year the Hazel 5 will walk together again!
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