Doctor visit update

We took Ella in today to see her cardiologist. To say it was difficult would be an understatement. It's not that we received terrible news, but that it was very hard on Ella and it wasn't that helpful to us. Started out as usual, went in to wait, got called back and started with the weight check (praise the Lord she is continuing to gain despite her lack of appetite!), she was apprehensive and kept saying "okayyy alllll done" in a polite yet shaky voice. We then moved on to the height check where she stood tall and the nurse was kind enough to use her had to mark her height instead of the insainly loud, scary, block that is supposed to screech in place above her little head. She was brave but I could see the fear in her eyes and her little body started to show signs of anxiety. Next we took her pulse ox, although different then the small soft cloth that wraps around her  little index finger at home she was obedient as I placed the large plastic piece that encased practically her whole finger. By this point she really had been about as calm as she could, she was quite afraid and really couldn't hold in the anxiety that much longer, her pleas to be "allll done" increased in number and in desperation, almost a begging more then a question. Last but certainly not least was the blood pressure cuff. Ella despises the blood pressure cuff with all she has, it squeezes her little arm so tightly that it leaves multiple blood blisters in streaks around her arm, the worst part about it is it is all for nothing. They didn't even get a reading. As the machine began to automatically tighten again Jon just took it off and said "no, we aren't going to take it again." I'm always thankful that he is able to step in (he had to step in a few times for me when I was hospitalized too). She was hurting and afraid by this point and we still had the main part of the visit left to go. We were directed into a room to wait for the EKG tech. A man walks in, we had seen him before. Although he isn't particularly kind he usually does a fair job. Today Ella was just having a rough time (didn't help it was during nap time) we just couldn't seem to calm her fears. I put her in my lap as I set on the exam table she grabbed hold of my necklace out of instinct as it seems to be a security to her since I have worn it most of her life. Then the man abruptly starts trying to small talk with her by giving her one of the EKG stickers... she didn't fall for that, she knew what was coming. So like someone who has never worked with children he starts putting the stickers on her as fast as he can, I guess thinking that it would just be over, but instead only added to her hectic fear. He then pulled out all the wires that needed to be attached to the leads that he had just put in place, her eyes were huge with fear and by this point she was all out in survival mode and, in her mind, no one not even mommy was on her side.He began to be unnecessarily rough with her as he put the wires in place, she was thrashing about saying "all done" and "OUCH!!" he pinched her with the clip at one point and when she began to cry harder he looked at her face and said "hey, you need to stop crying okay? If you would just be quiet then I could be done." Or something along those lines. I was furious, I was holding back the angry tears as he treated her that way (feeling mad at myself now for not telling him to just let me do it!) Finally my phone came to the rescue and was just enough of a distraction that although still crying she was still enough for a reading. It was miserable to watch.  I wanted to say, "dude, she is 2 and has more then likely been through more then you can possibly imagine, I'm sorry it is an inconvenience to you that my daughter has severe anxiety at a doctor office, but you chose pediatric cardiology as your profession so get your act together!" I didn't say the things that are on my mind and I guess I'm glad. I wish I had said something, but I know yelling at him wouldn't have gotten me anywhere. Next the doctor came in and he is overall friendly and "the best in Oklahoma" so I trust him more then the others for sure. If he had better staff I'm sure I would think more highly of him, but he is never as thorough or as educated as I would like. We told him all that has been going on and her symptoms. He agrees that it isn't normal, and that it may be something wrong, but he isn't sure what yet. He isn't overly concerned but thinks we should watch her closely. He suggested that he might have us stop giving her one of her medications and see if that helps. Here is the deal on that, the medication he wants her to stop taking, is a medication to help her right ventricle function better (aka keep her alive since that is her only ventricle!) also she has been taking this same medication her whole life, she currently takes it twice a day. He wants me to stop it cold turkey. I immediately got a feeling in my gut that I would not do that without a second opinion from Dallas. He said their is a number of things it could be, but right now he really just doesn't know. His biggest guess would be a rhythm problem. If that is the case she will need to be treated for that (most likely with another medication). Ella has had a rhythm problem in the past, one really scary night after her norwood when we almost lost her. He said it is unusual for that rhythm to return, but it's possible. So (again so thankful for a husband who speaks up) Jon told him that since are visits are several months apart now that we wanted to switch all of Ella's care to the Dallas team and that we will make the drive down there. He told him we just felt more comfortable having all of her care in one place. Since Ella will have all future surgery's/hospitalizations there we are just going to take her there every time. He understood and said he thought that was a good idea and would send a referral for our insurance if that becomes an issue. Instant relief fled over me realizing she was going to be getting better care. After this visit today I never wanted to go back... ever. On the drive home I called Dr. Lemler's office who was Ella's cardiologist in Dallas, the lady that answered the phone was kind and helpful, and within about 15 min. I had called her, hung up, she had talked to the doctor and called me back and she was in the process of starting to get Ella's medical records sent to them, not to mention I'm pretty sure she knew who Ella was from over a year ago. To put a cherry on top she said that Dr. Lemler only sees patients in clinic on Friday, but the Friday we were hoping to get in he was going to be off, so she said he would more then likely come in on the Thursday before that just to see her. Ummmmm amazing!!! I hung up the phone shouted that "I love Dallas" and told Jon "that is the kind of care our baby deserves, and that is the care we are going to get her!" I am convinced that sometimes medical staff just forgets that it may be just a job to them, but it is our whole world. Our only baby, our most treasured gift is sick, she has half a heart and we are terrified. To be treated as an individual human being instead of patient number 100,908,978 is a gift that I'm just not sure how we have managed without for the last year and a half. Thank you Dallas CMC for caring for the individual and for lifting some of the burden that I have been carrying. We don't have any answers, only more questions, but we are relieved that we will be in more capable hands soon! In the mean time I am going to continue her meds as usual (at least until I can do appropriate research) and he wants us to buy a pediatric blood pressure cuff/stethoscope to monitor her blood pressure, heart rate, and oxygen level several times a day. So that is the plan, we ask that you pray that this is a minimal problem and that Dallas will be just what she needs to stay strong until her next surgery! Thank you all for caring so much for our girl!