Wow. I forgot how well I compartmentalize things in my head.
I received an email tonight from a Mom whose baby daughter is undergoing heart surgery in a few months. She asked me for some tips- going to file these away for next time as it seems like a distant memory now (yet like it was only yesterday at the same time). Those frightening times are never far from my heart.
—– Forwarded Message —–
From: “Garrett R”
Sent: Tuesday, April 20, 2010 7:11:35 PM GMT -05:00 US/Canada Eastern
Subject: Re: I Received Your Name From E (Re: Heart Surgery)
Our daughter Kenley had (and still has) a VSD and ASDs and a defective ductu. She was born healthy, however at 3 months she stopped gaining weight, had meningitis, failure to thrive and subsequent heart failure. It was then that her defects were fully diagnosed. Her surgrey was done by Mark Bleiweis at Shands UF. He is fantastic.
You may want to ask about donating your blood prior to surgery- as Sophia may need a blood transfusion with the heart-lung bypass machine. Kenley needed one and this has to be done at least a week in advance if I remember correctly.
I asked the doctor and PA to walk me through the surgery step by step. We also got a tour of the PCICU where we would be post-surgery. This really helped me to mentally prepare- as we were in the hospital for almost two weeks and knew what was around.
You may want to ask about getting a private room- although this didn’t pertain to us because she never was moved to the ped floor rather stayed in the PICU.
We had her incision done across her chest, instead of vertical- this may be an option for Sophia. Kenley (was 17 months at the time) can wear bathing suits and leotards, and her scar looks great. I sometimes think that unless you look for it, one may miss it altogether.
One great tip… use the car seat after surgery when she has a broken sternum. We Carried Kenley from the car to the family room in her Britax car seat. Her chest was extremly sore (broken sternum and stitches) and this allowed her to sit still, while in a seated position.
Be sure to take pillows for when you are discharged (we were discharged directly from the PCICU) for the car ride home. We positioned them between her carseat belt and her chest to avoid additional pain should you slam on brakes.
I’m not sure how far you will be from the hospital, but take the doctor’s cards home with you. There was a critical care physician at the PCICU, head nurse, pediatric cardiothoracic surgeon, cardiologist, etc..
This way when I got home and had questions, I was able to contact the physician directly who knew my cjhild and it helped to put my mind at ease.
On the plus side- the surgery changed her life. She no longer slept all the time, moans in her sleep, requires RSV shots and is off all her cardiac medications (and there were several she took throughout the day).
She is a healthy, active beautiful 4 year old now. I no longer have to assess each and every symptom to determine if it is related to her heart- because her doctors assure me that although the hole did not close altogether, it is very small and should have no impact on her quality of life.
It was like her surgery gave me my little girl back.
Please let me know if you have any other questions.
There is a support group, which may be helpful. Likely you will find others with the same diagnosis as Sophia. Its the Broken Hearts of the Big Bend. Karen Chavez and Kim rooks run it- you can find their contact info through google I’m sure.
—– Original Message —–
Sent: Tuesday, April 20, 2010 3:40:06 PM GMT -05:00 US/Canada Eastern
Subject: I Received Your Name From E (Re: Heart Surgery)
My name is Sara and I received your name and contact information from E. My daughter Sophia will be having heart surgery later this year. I know your daughter had surgery as well and was hoping you might be able to help me with what we can expect.
Sophia is 15 months old and has been monitored by a cardiologist since birth (ASD). At 2 1/2 months she was hospitalized and diagnosed with pulmonary hypertension. In October, her cardiologist diagnosed her with Partial Anomalous Pulmonary Vein Return (PAPVR), confirmed it in December with a heart cath and determined surgery was necessary to repair the vein.
I know it will be at least 3 months before the surgery, but we are already scheduled to meet with the surgeon next month. Do you have any advice on questions I should be asking him or any other advice you could share?