Visit with the Cardiologist
Today we had our twice-yearly visit with DD's cardiologist at PCMC. First of all we register with the front desk. Then we wait in the uber-kid friendly playroom where DD heads for her favorite activity....
Then it is off to get weighed and measured. DD knows the routine and stands tall while this gets done. She usually remarks to the nurse "I'm growing!"
We're escorted into a dark cold room for the Echo. DD is one of the few kids who will hold still for this and thus does not need sedation (thank goodness!) She requested "Meet The Robinsons" for her movie and was watching when this pic was taken. The Echo took twice as long as normal as the cardiologist kept requesting extra pictures. DD was able to finish the entire movie while on the table and still had to stick around. She patiently held all the positions she was asked to do so the echo tech could finish his job.
After the Echo we had to wait in xray for awhile until they were ready for us. DD found a way to occupy her time.....she terrorized all the nurses and xray techs in the hall with her wild driving.
It was time to wait in the examination room until the cardiologist came in. DD had been given tokens for prizes. Instead of one or two tokens she was given six tokens between echo, xray, and EKG. DD used her tokens to buy six bouncy balls and had Mr. Wonderful scrambling for them.
Finally the cardiologist came in to give us the news. He is recommending DD for surgery now. The idea is to perform surgery before she shows symptoms and possibly has permanent heart damage . The original plan was a Mitral valve replacement. Our dr now thinks that the mitral valve can be repaired without replacement and in only one surgery rather than the multiple surgeries that we were previously told.
I was brave and did not cry until I got to the truck. Then I called one of my Cookies and the tears came for two seconds. She prayed the most beautiful prayer with me which helped me immensely. I am now starting to see all the blessings that have come from this:
1. The surgery will be open heart surgery but it will be one surgery. The valve can be fixed without replacement which means no anti-rejection drugs, no pacemaker, and no more surgeries as she grows. She would be in the hospital for a week if things go well, of which our cardiologist was optimistic.
2. Our cardiologist is the third one we've had since DD was born. The other two have moved on to Spanish speaking practices or positions in other hospitals. While we were grateful to have them, our current surgeon has a great bedside manner. He has taken the time to answer our questions rather than having his nurse explain things. DD especially loves him because he is bald and wears glasses. I personally do not care what he looks like. (Sorry I couldn't resist throwing that in.)
3. This surgery will be done while we are still on our current insurance. Its a good insurance. We were worried about having to shop for new insurance with the promise of a future surgery making that difficult. That this is all happening now is such a blessing and shows us that God indeed knows are needs and His plan is so much better than ours.
4. At this time in our lives we have a great support system in Utah with our families, and in Idaho with some family and our great neighbors and ward members. We have people all over the country who pray for us, think good thoughts for us, put our names on the temple prayer roll, and genuinely love us. That love goes a long way in helping me get through this. I'll need that help if surgery happens during the school year and I have to leave my boys. I have friends in my Ds community in Utah whose children have been through heart surgery whom I know will hold my hand through this. Mr. Wonderful is my rock.
I'm a bit emotional about all this right now. I certainly did not expect this result today. DD was such a trooper but she did hit her limit after three and a half hours in the hospital. She got to the point where she refused to take her shirt off anymore. Not even bribery would work.
We were told that a surgery date would be mailed to us. There is a backlog of surgeries due to RSV season and the the hospital beds were filled. We have no idea if this means surgery in April, May, or June.
Thanks for keeping us in your prayers. In behalf of my family, we greatly appreciate it.