In mid-December Lee and I took the kids to their cardiologist appointment in Wichita. This was only the 2nd time Cameron has had to go, but this was also Katelyn's usual every 6 monther. Cameron's Aortic Valve seems to be holding up well - it still isn't normal, but is technically "functioning" normal. They are not worried about him right now; in fact we don't have to take him back until he is 3 years old to get checked again.
Katelyn on the other hand had a little bit more of an upsetting checkup. She has been so active, eating well and getting taller that we hadn't suspecting anything would be different from the appointment 6 months prior. But we were wrong. Katelyn's gradient mean across her mitral valve increased substantially from the last visit. A typical mitral valve would have a mean of 0. The gradient mean pressures increase depending on how severe the stenosis of the mitral valve is. 0 – 4 is mild, 4 – 6 is moderate, 6 – 10 is high and anything over a 10 is considered severe! After Katelyn’s heart surgery at 19 months old the doctors were able to get her down to the moderate level, but a short 3 months later she was back up above a 10. She has maintained at a 10 – 12 for the past two years. On this previous checkup she ranged from a 14 – 17 which is just so hard for us to believe based on how she has been doing on the “outside”.
Because her gradient mean increased by so much in such a short time it has also affected other parts of her heart. Dr. Allen said it was obvious during the echo that her Left Atrium has increased in size because of the pressures. He also was able to determine that the pressures in her lungs HAVE NOT increased yet. This is a very good thing right now, for if her pressures had increased with the other changes we would be looking at a valve transplant immediately. Dr. Allen sent off her results to the Kansas City surgeons that did Katelyn’s previous surgery and they agree that for now we need to just keep a close eye on her and her lung pressures. So for now we are waiting for her next 6 month appointment towards the beginning of summer and praying that somehow (although we were told unlikely) that her gradient mean goes down and her chambers return to their proper size. We have also decided while we are waiting we are going to go to Denver to get a second opinion from Craig's cardiologist there. We have an appointment with him on January 21st. There is no way I could send Katelyn in to have a valve transplant without making sure it was absolutely the right move.
She has been a little sicker this winter than normal, but so have the rest of us so we didn’t think much of it at the time. Dr. Allen has attributed some of this due to Katelyn’s heart and that we need to be cautious about just labeling things she is battling with as colds, but rather it could be her heart and lungs struggling to keep up with her. We were given our list of things to watch again and among other things we are supposed to try to get her to gain weight. She really has grown the past 6 months upwards and is rather tall for her age, but super skinny. Dr. Allen said he wasn’t happy with how tiny she currently is. So we are back to trying to up her calorie intake even more. She really eats very well for someone her age. Her little heart just has to work so hard that her body burns up those calories like no other – plus my mom and I have decided she has my Great Papa Ackerman’s metabolism (we are jealous)! J
I know I have done a horrible job of keeping everyone in the loop on Katelyn, but to be honest it has taken some time to adjust to. I had gotten so used to going to her checkups and hearing the usual, “well it doesn’t look normal, but she is doing what we would like”. To hear this last time that we may be facing a difficult procedure in the near future was heartbreaking. A mitral valve transplant is the most difficult of all the valves to replace and there are several decisions to be made when the time comes that are not going to be easy and ones that no parent should have to make. But I also know how strong and brave my little angel is and we will get through whatever we have to – I’m not losing her. To close, I ask all of you prayer warriors out there to add Katelyn to your list please. I will be sure to update after our January 21st appointment with the results from Denver.
