Friday, February 29, 2008

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.




7 comments:

CandyandLadybugs said...

Lauren will be in my thoughts and prayers. If there is anything I can do for you, let me know. I'm glad it is going to be less surgeries and a better outcome than previously thought. Whew! :)

Kimberly said...

We're here for you. Thanks for the update.

goingtogoal said...

You know I will be lifting Lauren, you, Mr. Wonderful, the boys, the medical team up in prayers constantly until this journey is done! I wish I could be there to help you and be with you.

Much love,
Laura

Soozcat said...

The words "open heart surgery" are scary in any context, but you're right--it's a blessing that this is happening now, in this way. We will definitely keep her, you and your family in our hearts and prayers.

heather said...

First of all ... Love, love, LOVE the darling pictures of Lauren!! Is she not the cutest little girl?!?! You already know that I know all too well the agony of open heart surgery, but also know the comfort that comes from above when our little ones need this surgery. We went to the temple as a large extended family (everyone fasting) and I was able to feel such a strong peace come over me that everything would be okay with Morgan. I think it would be even harder to have to go through now with having Morgan older and being even closer to her. But there are definitely positives about Lauren being old enough to let them know she is in pain and being able to vocalize her needs and also her understanding your love and support. Just know that I am always here for you and will be up at the hospital to see both of you when all of this takes place.
XOXO
Now get this school thing taken care of already! :)

mum2brady said...

Oh my - love the pics and oh my - I'm so behind in my blogging I didn't get a chance to read this til tonight. I am sooo sorry that you got this news - but so happy that Lauren will only have to have ONE surgery instead of multiple ones and I am praying so hard for the docs to be guided to repair her valve and for the surgery to go well. Please let me know when you'll be here and we'll come up and visit (or I will :) you probably don't need my wild little man terrorizing Lauren after surgery!!! Sending lots of hugs and prayers your way!

Also praying that things will go well with the school district - I'm sorry you're having to go through all of this at the same time. School issues can be sooo draining! Praying everything works out in Lauren's favor!

Hugs!!!

Tammy and Parker said...

Ah! Where have I been? Why didn't I know this? Why didn't you stop by while you were here?

I am so glad to know that there will only be one surgery. And that the insurance will work out.

We will continue to keep you guys in our prayers.

And we will so be up to visit when you guys are back up in the PCMC. We haven't been through heart surgery, but we been through enough other surgeries to qualify for holding you tight all through this.

Hey. I would love to email you and get your phone number and give you a call. Would that be okay?