The Kawasaki Disease Forum

Our family traveled to UCLA Ronald Reagan Medical Center last week so Paige could have her open heart surgery. We were blessed enough to have it done by one of the best heart surgeons in the world, Dr. Laks. He was hoping to use CorMatrix to repair her giant aneurysms. She went into surgery around 9:30am. The surgery was supposed to last about 4-6 hours. We got an update about every 3 hours. The largest aneurysm in her LDCA was 26.5 mm. It had also compromised the Circumflex artery and there was part of the Circumflex that either had a smaller aneurysm, or it was damaged by the other aneurysm. The LCDA aneurysm was in very poor shape. It was full of old clots and what Dr Laks called "30 day clots", meaning they were forming and breaking down-but very present. He said the walls of the vessel and the aneurysm were terribly deteriorated. He could not repair it. The aneurysm started a bit after the artery cam out of the Aorta. He then repaired and reinforced the bad part of the Circumflex artery and attached it to the area where the LCDA normally came out. The left aneurysm was bypassed on the distal end by a Mammary graft on the left side. The aneurysm was removed and used for pathology studies at UCLA and for Jane Burns at UCSD. The other huge aneurysm (as I remember about 14mm wide and over 2 cm long) on the Right Coronary was to also be repaired, but it also was full of old and new clots, along with calcifications. He left part of the top of the RCA as there were several vessels that had originated there and were feeding part of the heart. He originally tried to bypass with the right side Mammary Artery and did that. She was taken off the bypass machine and was being cleaned up and was ready for closure when her heart went into distress and started to fibrillate. He said the right Mammary wasn't long enough to give enough blood to the right side of the heart and that is why it went into distress. He put her back on the heart/lung bypass machine. The right side of the heart had been pumping more blood to the left side to make up for the big aneurysm that had left her with a very small LCDA below that aneurysm. He had to disconnect that Mammary artery that he had tried to use and then took a very large vein out of her thigh (making 3 very large incisions, one about 6", one 4" and one about 3" going down her right groin and thigh). He attached it into the aorta and bypassed around the RCA aneurysm. The heart took that graft well. He said that aneurysm also was very deteriorated and also sectioned it out for pathology. She got out of surgery around 9:30pm. I broke down once when I knew they had to put her back on the bypass machine. I knew she had been off and there must have been a problem to put her back on it, but they didn't tell me why. We saw her Wes night late when she came out of surgery, but of course she was medicated heavily. The breathing tube and stomach tube really bothered her that night as she awoke. They removed it later the following day. She had quite a lot of pain the first 2 days until they took out the 4 tubes that were draining her chest fluids. There were also associated wires that were in there monitoring. Other monitor wires and tubes went into her jugular and those were removed a couple days later. She sat up and dangled her feet over the bed the 2nd day. Stood up on the 3rd day and started walking on that day a little. Then a little more the next day and around the whole floor of the hospital by the 5th day. Monday, she was released and Tuesday she walked over a mile downtown and we went to see a movie! She is still stiff and sore and one of the incisions on her leg looks like there might be a stitch problem. The last few days she's only taken Tylenol for pain. Last night was our first night home and in our own beds. Feels great. She will have some stitched out on Tuesday. This was what we were told might happen about 11 years ago. Dr Laks told us that when he found all those clots in her aneurysms he was amazed she hadn't had a catastrophic event yet. Many of those clots could have broken off at any time. He particularly told us that one of them had clots accumulating on the distal end where the blood flows directly to the heart. We don't call her lucky, we call her blessed! Many people have prayed for Paige over the years. We are now so very thankful we got her there for the surgery. He said with proper diet and exercise she could get 20-30 years out of the grafts. He said probably within the next 10 years there will be new technology that will help her extend that even more....we don't really know. We are very grateful that she didn't have an event before the surgery or anything damaging happen during the surgery. She has a whole new list of meds--about 9 right now (some will be discontinued) that she has to take some once a day and some twice. So! That part of the KD nightmare is now almost over. I hate what KD did to my daughter. I hate that we all had to go through this and that she was fine and it damaged her. I hate it that other parents have to live through this nightmare and all the unknowns. However, I am thankful to a gracious God, prayer warriors and loving people that understand and do not give up on people that have to go through these tough physical and emotional times. If any of you ever want to contact me please send me a private message on here and I will try to make myself available with my phone number or whatever to answer questions if you have any that are private. I'm not an expert on KD, but we have a lot of knowledge about it and I am available to listen if you need an ear!

Hi Sandy,

Thanks for sharing all of the details. I am so glad that you and Paige are back home and that she is doing well. I have been thinking of you both.

Take care,
Carin

Sandy,

Thanks so much for the update, have been thinking of you and Paige since the 19th

What an ordeal for you on the day of surgery Amazing how teens recover and that she is now home !

Please continue updates as you have time. Paige truly continues to break new KD ground.

best,
nancy

Hi
Thanks for posting this update! This must be the Paige we met in Florida. Tell Paige Kristin says Hello... She has chest pain and they are recommending a cardiac MRI. We are sorry to hear Paige had to go through this surgery. She is so brave!

Langril-
We are in Oregon. However another Paige, same age of 17 just had double bypass surgery in California. I can get you in contact with her mom if you wish!
Sandy

Tell your Paige that she is amazing and to keep being strong and that I am praying for her! And if you can get the other Paige contact that would be awesome. My wish for make a wish was to meet someone that also has Kawasaki Disease and it would be awesome to contact her again