Cardiology

Molly was seen in cardiology clinic today. She hasn't been seen since January. I never look forward to this appointment. Everything about it stresses me out. She has remained stable from a cardiac stand point for so long and she has done so well and I'm always waiting for him to give us bad news after always receiving good news. We have been taught to always look at the patient and if you look at her she looks phenomenal but sometimes I have a hard time with that concept. Molly woke up in a great mood and I was so relieved. I didn't want to assume she would be in a great mood for her appointment because I just never know with her. Last time she shocked us by being cooperative, no crying or getting mad. That was NOT the case today. The nurse came out to the waiting room to let us know that they were running a little behind and said that Dr. Rhodes (her cardiologist) didn't know if he was going to need an echo today. I asked her if we could do the echo first if one was needed because she was going to get angry and they wouldn't be able to get great images. The echo was going to be based off of the blood pressures and EKG. If the EKG showed something unusual then we would have the echo but it didn't so there was no echo today which was a good thing because there was no way she was going to cooperate. They did the EKG first and she got mad but calmed down when the lady started blowing bubbles. She wanted no part of the ipad today. Then it was time for her to be weighed. You would've thought they were cracking her chest open again. She was definitely the only kid in the entire building that was crying and carrying on...not that I cared. If she could've climbed off of the scale and jumped into my arms she would have. She finally calms down from that and now they want to check her sats and blood pressure. Her sats were 98 which is normal for her...well, for any healthy person really and her heart rate was 145 (she's paced at 121). So she was pretty angry. There was no way they were getting a blood pressure and they didn't. Dr. Rhodes comes in to talk to us and listened to her. He said he still hears the mild regurgitation on her mitral valve but it's the same that it has been. Her heart pressures sound great and her heart in general sounds great. I asked about turning her pace maker down and what we would look for if we did turn it down because she's not in a normal sinus rhythm. He said that you wouldn't be able to tell by looking at her but a healthy heart would be able to tolerate a junctional rhythm which is what she is in most of the time and he doesn't see why she wouldn't tolerate it. I'm not ready to find out if she will tolerate it or not so we are going to sit at a rate of 121 for now. He had 2 questions for the future: 1) how long is she going to need her pacemaker? Does she still need it? When can we take it out? & 2) Will her mitral valve need any type of repair or replacement in the future? Right now it's functioning really well and growing with her and the hope is that it will continue to do that. But he said "I don't have a crystal ball so I can't see into the future by I'm very optomistic". Only time will tell. We went over her list of medications...all 4 of them (woo hoo!) and he asked if the only heart med she was on was asprin and I said yes. He said "who would've thought that ever would've been the case? Not me". I said "probably not many people.". He then said that Molly is going to have a whole bunch of cardiologists scratching their heads for many years to come because they never thought she would have looked so great and be so healthy. Just another reason we are doing the walk for Children's Hospital because none of this would've been possible without them! So over all it was a great visit aside from her meltdown. We go back in September and at that time she'll have another echo. In the meantime we are going to protect that heart like we have been doing and enjoying the summer!! Kerry