Guest Blog: Lil’ Taylor’s Heart-Warming Tale
By Adam Pick on April 16, 2008
Again, I find myself touched by another heart surgery success story. Last week it was eighty-three year old John DeFalco that inspired me after his aortic valve replacement operation. This week, it is all about Taylor, a two-year old with that needed cardiac bypass surgery.
Her mother, Michelle, tells the story best…
My daughter was 18 months old and had ASD repair. There is potential she may need a valve replacement. After surgery, July 5, 2006, she had a small valve leak. As of Fall of 2007 it is a moderate leak, but no heart enlargement.
You are so right about the lack of information. There’s so many questions and concerns. I bugged the mess out of her pediatrician, heart surgeon and his nurse. I always tell people who know someone who is about to have a child go through open heart surgery, that I will be more than happy to talk to them. I felt so alone and helpless. I wanted to take my daughter’s place.
But you know what we’ve experienced is an awesome miracle. I’ve started a scrap book titled “Taylor’s Heart”. I remember my husband and I could not even take her to vet visits because she would freak out when she saw anyone in scrubs or white coats. She understands now when we go to the doctor that they are just listening and taking pictures of her heart. I don’t want to go through another surgery, but if she needs it and it provides her a longer and healthier life, I’m ready to go through the motions again. Honestly, I’ve never dealt with this emotionally.
Its so hard to see your child in PICU with tubes and monitors every where. Really hard to know that her chest was opened, her heart was stopped, she was put on a bypass and someone physically touched and mended her heart. But, I’m more thankful than anything. So thankful and happy she’s here and healthy. She was so strong. I know at times she was in so much pain, especially the moment her drainage tube was removed. She had to be strapped down to boards for X-rays.
It’s the most heart-breaking thing to go through, she would beg for mommy and daddy to help her. She didn’t realize that we were doing all we could across the room, behind the glass. Everyone kept telling me to go home and sleep, she’ll need you more when you go home.
Yeah right, I never left the hospital. There was no way I would not be by her side at all possible moments. I finally got to hold her 32 hours after surgery and she was ready to walk and play. It was amazing. Her doctors, nurses and all of the staff was wonderful. Nothing holds her back now, except for me. 🙂
Thanks for reading my story. Also, congratulations on your blessed life.
Maribel says on April 17th, 2008 at 4:57 pm
MIchelle: How nice to see Taylor good and smiling, I am a mother too and I think you’re sooooo brave (you didn’t had a choice!!!). My husband had a valve replacement 2 months ago and he’s more than fine, driving, working and very healthy. Imagine your little, beautiful Taylor the same, she’s going to be ok. It must be difficult to manage everything: doctors, medicines, hospital and so but you have to pull the strength from wherever you can to be there for her. Keep us informed and we will have Taylor always in our prayers. Congrats!!!!
mercy turan says on April 20th, 2008 at 12:58 pm
Dear Michelle: What a joy to know that you have your little precious Taylor back at home with you and doing well!
Your note to Adam brought tears to my eyes (again!). Your fourth, fifth and sixth paragraphs could have been written by me as well. “It is so hard to see you child in PICU with tubes and monitors everywhere”. Your children are always your babies and it doesn’t matter whether they are 2 years old or 37! I too could not leave the hospital even though our son was a grown man of 37. (Ross Procedure March 5, 2008). And it didn’t matter that I am an ex ICU nurse. It is very different when the patient is also your very own. Funny that John was in PICU also, since his surgeon does many pediatric patients and he had requested that John be in the PICU. We were surrounded by families with babies like you and a couple of older ones, like ours.
It is true that even in this age of patient awareness, encouraged involvement and respect for patient’s rights, there isn’t enough attention being paid to these patient needs. There needs to be a patient advocate or source where patients and family can go at any time of day or night for questions and concerns. It is a well known fact that an informed and aware patient/family will impact positively on the patients progress and recovery. So why isn’t this being done? Ocassionally you will encounter a surgeon with a great bedside manner (like our Dr. Bleiweis, Shands Hosp. Univ. of Florida, his ARNP Kim, and a great ICU nurse (Monica) at PICU) who will do their best to keep your worries and concerns at a minimum BY KEEPING YOU INFORMED! But I guess it could be a legal problem for them to give out “too much” information (?) before surgery, or perhaps it would scare people away. I can’t imagine, since Adam can do it so candidly and well to put ones fears at bay, why can’t doctors do that? I guess I can answer my own question by noting that there is no better point of view than that of the person who has actually been there.
That is why Adam’s book and Blog are important. We must pass the favor along, and be open to help anyone else by being available to answer questions (as they relate to our own experiences). That is the reason we are on this earth, “to (help and) love each other as He loves us”. (my belief. . . scripture from the Bible).
Much love and blessings, Mercy, mother of John
Michelle says on April 22nd, 2008 at 7:45 pm
Thank you for reading my story. You are so right! If I could help anyone who has a love one going through this, I’d love too. I appreciate all the work Adam has put into this. I’m so happy your son’s surgery was a success. I told Adam in other emails that what he and my daughter went through was an incredible miracle. Its so hard, but so awesome at the same time. Feel free to email me. I’ve made contact with Maribel and she is such a sweet and positive lady! This site has been wonderful!
May God continue to Bless you and your love ones!