Tuesday, October 4, 2011

31 for 21, day 3

Today was a Dr. visit day.
I think it's pretty amazing that all of Brenna's cardiologist appointments are lining up with this month of posting 31 for 21.

Our day began by driving to the clinic for the cardiologist to listen to Brenna's heart.
Brenna has a heart condition called Tetrology of Fallot. Don't worry. You are not the first person to look at that and say, "huh?" Here is a link to a fairly simple explanation.
Brenna's first open heart surgery was when she was 9 months old. 

We expect to have her go through another surgery, but we just don't know when. We thought by now she would have had another, or possibly 2. So far, so good.

Can I just say I hate waiting rooms?
Brenna doesn't mind, they usually have a good movie on. Today was "Oliver", as in the animated cartoon about the cat, and Billy Joel is the dog's voice. I like that one. It was better than Pinocchio where we first checked in. I'm pretty much banging my head on the wall with those movies by the time we are called back to the room.

Yeah. I was bugging her.
When she was little, she would either sit and watch the movie or watch the other babies. Babies fascinate Brenna. She adores them.
Over the years we have developed quite the list of doctors. Some kids with Down Syndrome have very little in the way of health problems. Some, well, some of us hit the jack pot. We have spent long hours in offices of her G.I. , endocrinologist, eye, dermatologist, pediatrician, ENT, Orthopaedics, cardiologist....I think that covers everyone. I love each one of these doctors. We have been so fortunate. They are kind, caring physicians who treat Brenna with great respect.

But, like I said, today was Cardiology. It's not my favorite, because it's the scariest for me. The doctor is very thorough and takes his time to explain what they are watching. (When I asked if we could take pictures and explained why he did look at me in great surprise, but shook it off. Brenna was in charge of photos at this point.)
As best as I can explain, if you are looking directly at the drawing here, on the left (bottom of the photo) side is the ventricle where Miss B. has problems. The blood flow leaks significantly into this ventricle and is not carried back up. This enlarges the side of her heart, which is not what we want. The other side also leaks, but not as significantly.

The doctor listens to B's heart and today said there was no significant change from last year, and in 2-3 weeks we will do another echocardiogram. We used to have to sedate her for these. It was a nightmare. She has ultra sensitive skin and the EKG leads would stick to her skin for days and by the time I could get them off with her screaming and crying, they would leave large bruises. Brenna wouldn't wear band-aides the first 10 years of her life. Thank goodness for technology, as the material they use for the leads now comes right off and they don't stick!

The doctor asks all the usual questions:
Does she turn blue?
Does she sweat when not exercising?
Short of Breath?
Chest pain?
Heart racing?

Thank God we answer no to each question, which usually makes the doctor do a double take, considering how her blood flow in her heart sounds like a water fall.

Our favorite game while waiting in the rooms used to be tearing the paper cover into small pieces, wadding them up and then playing basketball. Or, coloring all over the paper. Or playing with the blood pressure cuff and the light they use to look in your ear. Or blowing up gloves. Or answering "are we done yet?" a hundred thousand times. Now we play on the iphone. Have I mentioned I love technology?

While waiting for the nurse I found myself in a familiar position-snuggled into Brenna while she sat on the table, my face buried into her back and neck. I breathe deeply as if to imprint her smell on my brain and run it through my very pores. I close my eyes and pray a big thank you that there was nothing significant heard on the examination today, and try not to think about the upcoming echo. It is very quiet for a few minutes and for a fleeting moment I wonder what life would be like without this amazing gift we have been given.

Then it's time to go and Brenna is more than ready to get back to school and I am thrown into real time and we gather up our belongings, thankful that there isn't time to dwell on the what-ifs and head out the door to meet the day.

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  1. oh the tears.
    Lynn, she is beautiful and that smile melts my heart.
    I only hope the best for her and your family.

  2. Oh man...here come the tears...I almost made it through the entire post until the very end and then they overflowed! :-) I just absolutely love that you are sharing Brenna and your journey with all of us. It makes me feel honored to get this peek at what life is like for all of you and definitely raises such an awareness for what you go through. Your last post was incredible!! I know it is totally different (comparing apples to oranges) but I have gotten some pretty crazy questions about adoption so in some small way I kind of understand wanting to just smack people! LOL! Thank you so much for being real about your life and not just showing the light and fluffy stuff! :-)

  3. It is so hard to watch your child go through medical stuff...you just want to protect them...glad Brenna is doing well now and hope she continues to in the future!

  4. Oh Lynn.
    I was just like Vanessa in that I read this with fascination which turned to tears as I got to the end. Does it make sense to say that I could feel your heart beating in it?

    I also loved yesterday's post. I didn't get to it until just now so I'm responding to it here.

    We grew up with an aunt (Mom's sister) who did not have Down's but was very obviously physically (and mentally) handicapped. I guess that's why it just never phased me as a kid for people to look different. Where we went, she went, because we've always been such a close famiy.

    I was much, much older when I realized that people were staring at her. I remember feeling fiercely defensive.

    I don't pretend to relate to you as a mom, but I do relate to your heart. Mostly, I want to tell you that your posts have made me stop and consider my wonderful grandparents. They made it look so easy to me as a kid. I don't think I ever really understood their hearts until now. I wish it were not too late to tell them so.

  5. I still remember Brenna's heart surgery - vividly - and how she looked the month or two before the surgery. So white. And now seeing her ruddy-cheeked...I offer up thanks that she's made it this far and this well without a second surgery! Whenever I hear from you or Mother that she's having another echocardiogram, I hold my breath until I hear the results.

    So enjoyed listening to her Saturday night...she is a very normal 17 year old!!

    Now I'll have to go wipe my own tears away.

  6. Brenna blogs make me cry a lot! This is so sweet and done so well. She has lived through so much. I am so grateful that she is doing well. Thank you, God! I cannot believe she is 17. Time has gone so quickly.

    We are off to Barcelona and France today. Jud feeling good. Me, so happy that we can have this wonderful trip.

    Big hugs,

  7. (Still sniffing . . .) Another beautiful post, Lynn. Amen to another "healthy" check-up and another "amen" for technology too. Hugs, Terri xoxo