This chapter has not ended . . .

Genevieve was released from the hospital just 5 days post surgery.  She sleeps in her own bed, wears her own clothes, is not connected to any machines and is working on her recovery so she can continue to get back to school and her normal routine.  Two weeks ago today, we sat in the surgical waiting area receiving reports on the surgeon’s progress.

So, why am I still up at 3 am?  While the hardest part of this time may be over, the actual surgery, this chapter in Genevieve’s story has not yet ended.  Her heart will never be fixed – at some point she will transition from being a pediatric heart patient to an adult heart patient.  Studies indicate that there are more adults living with CHD at this point in time than there are children so there is a lot of hope for more advances to support them as hearts repaired at a young age have unique challenges not met by doctors who are focused on acquired heart disease.  So while her story will last her lifetime, I am waiting for this specific chapter in her journey to end.

Friday is her follow up at Boston Children’s Hospital.  She will go through all the testing – EKG, echocardiogram and chest x-ray.   She will have her vital signs checked and we will meet with her cardiologist to discuss just how things are going.  I am hoping that I will find my peace and perhaps a full night’s sleep after that appointment.

My friends and family tell me just how great Genevieve looks.  Her sparkle is back – as she dances around the house always smiling.  Her incision is healing well with no signs of infection.  It all seems to be going perfect.  She is having an amazing recovery.  It is all that I cannot see that keeps me awake at night.

I can’t see if the repair is truly holding, I cannot see if her heart is functioning well or if her partially collapsed lung has recovered.  Ask anyone that knows my girl, she had boundless energy frequently outpacing her brother and other children without any health concerns.  From outward appearances, I handed over a perfectly healthy child and allowed a surgeon to open her chest, stop her heart and rebuild her aortic valve.

If you are the praying type, we could use some positive thoughts for Friday’s appointments.  We are all ready for this chapter to come to a happy end and to get back to life.  Less about the heart surgery survivor and more about a 7 year old who loves to sing, dance and play.

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