eRallyBoard

Andrew's Doing Great - 7 Surgeries in 21 Years

Hi! I recently came accross the Xmas letter you left with us when you saw us at Boston Children's Hospital. I was the one with the really big guy in the hospital. I want to thank you for your visit and gift. We enjoyed the distraction of a trip to the gift shop and it gave us an excuse to walk around. I also want to tell you about Andrew's recovery. His new valve was put in Dec 1st and we went home to No.Va. on Dec 9th. It was one of the smoothest recoveries he has had. The 2nd day we were home Andrew went out to eat. The 2nd week he was home he went bowling!!! He started back to community college classes Jan 15th and later picked up a part time job as well. His cardiologist in D.C. is thrilled with his improved health. We were in Boston because the Docs in D.C. and at Johns Hopkins declined to try the surgery as they said it was too risky. I guess they were wrong.

Anyway, I just wanted you to know how well Andrew is doing and to thank you for your Xmas visit. Please let me know how Annie is doing.

Martha Pauly

Spreading the Word

Thanks to Maria Wilcox for ordering 15 books!  She writes...

"I think your book is great. I am a believer that the more information people have the better. I belong to this woman's group with very diverse backgrounds. I would like to give each person one - it should go in many directions."

Julianna's Story

I heard about the book through a friend in Alaska.  Her and I both have daughters that were born with Tricuspid Atresia so we became email buddy's through finding each other on the CHIN web site.  Somebody she knows told her about the book.  She loved it and now I have purchased it so that I can read about your journey.  Both our daughters have had the BT Shunt surgery and the Glenn.  We are waiting for them to get older and bigger to get the Fontan.  I will be more interested in that part of your book so I know what is in store for us.  My daughter, Julianna, is now 16 months and is doing very well. I hope your daughter is doing well too and I thank you for writing something that all of us with children with heart defects can relate to.  I too journalized every step of Julianna's days from birth so it will be nice to mirror that with your book.  Thank you and lots of health to you and your family.

Sincerely,

Lisa Marasuilo

Maggie's Story

Hello Ed,

I received your book today, and I also read it today!

Thankyou for making the effort to write this book. I have an 18mos. old daughter, Maggie, and she was born with Tricuspid Atresia. She has also had the BT shunt & the Glenn. We are awaiting the Fontan. Maggie had a pretty rough recovery after the BT shunt, as it was put in under emergent circumstances when she was only

9 weeks old. She was on ECMO and had MANY complications, spending a month in the hospital. I wish I had read your book before that time. I am also an operating room nurse, so I knew more than what was good for me, and it was VERY hard to find positive things to focus on. Your book sounded all to familiar. I know your efforts will help countless people.

I heard about your website and book through another friend who also has a child with CHD.  Her child is also 9 years old and had pulmonary atresia, and has had the same 3 surgeries as Annie.

I definitely want to share our story on your website.

You can check out Maggie's story on the

www.tchin.org

website. I am sure you are familiar with this website, but if not, check it out as it also provides a lot of support and information for families going through what we have been through.

Maggie is a happy & healthy toddler now, and we look forward to a successful Fontan in the future.

Thanks again,

Lori Higgins

Mechanic and the Cardiologist

A mechanic was removing a cylinder-head from the motor of a Harley motorcycle when he spotted a well-known cardiologist in his shop.  The cardiologist was there waiting for the service manager to come take a look at his bike when the mechanic shouted across the garage, "Hey Doc, want to take a look at this?"  The cardiologist, a bit surprised, walked over to where the mechanic was working on the motorcycle.  The mechanic straightened up, wiped his hands on a rag and asked, "So Doc, look at this engine.  I open its heart, take the valves out, repair any damage, and then put them back in.  When I finish, it works just like new.  So how come cardiologists get all the respect and we mechanics get none when you and I are basically doing the same work?"  The cardiologist paused, smiled, leaned over, and then whispered to the mechanic . . . ''Try doing it with the engine running."  [Author unknown.]

Thanks for the Visit

We are the parents of a little Simon, now 8 months old, who was born with a coarctation of the aorta (repaired at day 5) and small left side structures (heart surgery scheduled for May). Unfortunately, we discovered that he has an unexplained cortical visual impairment.  He was hospitalized in December for a cardiac catheterization.  During his stay he received a gift certificate from your family.  He has recently been re-hospitalized in the CICU for cardaic ischemia.  We used the gift certificate to buy him a bright red, stuffed Elmo that he really likes.  He seems to be atrracted to this color and to track Elmo with his eyes.  He also likes the softness of this toy.  We are really happy with this improvment in his vision.

Thank you a thousand times for this gift.  We will always remember all the attention received during these difficult moments.

We wish you all a very happy life.

Presentation by Dr. Audrey Marshall

Last night in Boston, Dr. Audrey Marshall gave a very inspiring presentation on the advances in fetal heart surgery.  The advances made since the first procedure in 2000 are amazing.  Seven children who were destined to be born with Hypoplastic Left Heart Syndrome (HLHS), a potentially life-threatening heart defect, are living normal lives with normal heart function!  No post-birth surgical interventions were required.

The procedures are done through a catheter inserted in the mother's womb and into the fetal heart.  Doctors watch ultrasound images to guide their efforts.

The child to whom the book, "The Rally Board", is dedicated was a victim of HLHS.

With progress comes new challenges.  For example, no one has ever had to think about resuscitating a fetus before.  Also, improvements in surgical instruments and imaging techniques are required to improve success rates.  But this team of pioneering doctors is uncovering and facing these new challenges head on.  We certainly wish them the best of luck!

Getting Teeth Pulled

Annie recently had to have two teeth pulled.  Given her cardiac situation, we were obviously nervous about having this done at the local dentist office.  But after checking with her pediatrist and cardiologist and meeting with the dentist, we were convinced that it was safe to proceed and possibly more risky to delay for second opinions. 

The procedure was preceeded with the usual dose of Amoxicillin to ward off potential infection from the particularly heart-unfriendly bacteria that reside in the mouth.   But, other than that, everything went as it would for any heart-healthy child.  Thankfully, no incidents to report other than some questions about how to chew with two teeth missing.

Kids with VSD Leading Normal Lives

I'm always amazed by how many children that I have known for years have a Ventricular Septal Defect (a hole between the chambers of the heart) without me or many other people that know them realizing their condition.  So many of them, thankfully, lead normal lives.

Until our daughter's condition became known, we hadn't realized that the teenaged girl that lived across the street from us for years had a VSD. 

Recently, after having purchased "The Rally Board" book, a friend from college surprised me with a note about her daugther.  She wrote, "Our older daughter has a VSD.  Luckily it has been closing as she grows.  The cardiologist thinks it may be completely closed this year (keep your fingers crossed for her).  The hole hasn't affected her growth or life at all.  The only thing she needs to do is take antibiotics before going to the dentist."

Topical Numbing Drug

DB from Philly comments on Emla...

My eight-year-old son has withstood three brain surgeries over three years (he has a tumor). A needle of any type is the only thing he fears (thank God). One of his nurses told us about Emla, but we've found that they rarely use it -- it apparently needs to be applied about one half-hour (but not much more than that) before the needle stick, and the person applying it needs to know that that spot will yield a good vein. You might convince a sympathetic nurse to give you a tube of the stuff to use before the next time, but the limitations are difficult to overcome.

Good luck and God bless you!