This may be sporadic, as Bella and I are in the midst of making Miles' Jell-O Christmas cookies and traditional sugar cookies tonight. (She is such a great helper! She peaks in through the oven door and talks to the cookies as they are baking, encouraging them to be delicious.)
We were so blessed to meet with her new cardiologist from Children's of D.C. this week. It was short notice, but we were somehow able to see him at this location (one he appears at only one week a month!)
Bella was not cooperative whatsoever with the EKG or the ultrasound. She is no longer used to having them done, and she is now 2-years-old (thank You, God!) and acting the part quite well. While at the original hospital she was referred to by our insurance, she was also uncooperative for the same tests. They were impatient with her and the nurse/technician performing the ultrasound was pressing the ultrasound device onto Bella's chest and throat too hard causing Bella to cry even more. It wasn't a pleasant experience at all. We were so pleased that this technician was not only patient but cooperated with her and worked around her small fits. I laid flat on my back on the hospital bed and laid her on her back on top of my chest. Miles held her legs gently and I attempted to keep her from sitting up, hitting the technician, trying to steal his device and whatnot. We were able to finally calm her and though considered uncooperative, he never showed impatience and didn't try to just go by a check list. Instead, if she was positioned in a certain way that he knew would benefit the image he needed 5 items from his list ahead, he'd jump to that.
The EKG took way longer than necessary because Bella threw a nice old fashioned tantrum. They don't want to traumatize the children, so after a bit they try to do something else (have the doctor examine her, we hold her and talk/attempt play) and go back to what needs to be done eventually. Instead, the intern nurse gracefully stepped aside and allowed the EKG technician to seamlessly place all the wires for the EKG and get perfect results for the doctor who was literally on his way out the door to an overnight flight.
I was highly impressed with his respect, knowledge and demeanor. He listened intently to what I had to say, any concerns and what has happened with Bella so far. He was also genuinely friendly. Many of you know that doctors, especially the intelligent specialty doctors, can tend to lose their personalities after med school.
During the first EKG attempt he had left the examination room momentarily and reappeared with some information for me. He said that he would like to put together a pulmonary team for Bella which would include himself and their pulmonary hypertension expert as well as a CPNP that can act on our behalf when the meetings go on.
Her ultrasound came out fine as did her EKG. In fact the doctor mentioned he felt she is currently being treated too aggressively and doesn't think a heart catheterization is necessary. Hallelujah! He has made no changes in her medication (sildenafil) nor her oxygen. Like the Omaha cardiology team, he prefers to work as a team effort with people from departments that represent that child so that all aspects of the child's health are addressed when any changes are made.
He promised to be in touch soon after he got back from his overnight trip. I didn't expect him to make the call himself but this afternoon I picked up the phone to hear his voice on the other end. He asked for the sleep study notes from November 2010 when she also had her heart cath done and he is also referring her onto the head of pediatric pulmonology downtown. I'm thrilled for that. I feel so blessed and am so happy God is providing these doctors for Bella.
I've yet to officially get her transferred to Children's from TriCare's standpoint, but that can be done and will be done. I now have the help of a good pediatrician who understands my woes and has no qualms with helping us in whatever way he can.
Some of you may or may not be privy to the November 2010 anxiety attack I had which consequentially led to anxiety and more anxiety attacks. I feel this was brought on due to a medication to help my stomach issues, but that's still up in the air. Most people feel that Bella's issues have instituted my anxiety, although I disagree. Regardless I was in therapy in South Dakota to try to help anxiety attacks. I felt helped, but not much. Today I was able to meet up with a therapist and feel she is a match :) For any of you whom ever been to therapy, you may know it can take several attempts to find a therapist before you click with one of them. She and I definitely clicked and she understood me very well (and no, not in the condescending way a therapist may pretend to haha). I'm very blessed with having stumbled upon her first!
Looks like I'm on my own for the rest of the Christmas cookies. Someone little has crashed :)
Thank you to all of our family and friends who've prayed for Bella throughout her struggles. We can never thank everyone enough for their support and prayers and truly appreciate how you all continue to prayerfully support Bella.