SAFE AT HOME FUNDRAISER

When Jenifer and I first interviewed the thoracic surgeon at Children's Medical Center before having Kaleb, he told us about their "Safe at Home" program. At the time, Jenifer and I were impressed that they had a plan and a program set in place between the two critical surgeries.  Most other hospitals and surgeons we interviewed just sent you home to recover and await the next surgery.

The program is designed to allow children with complicated heart defects to go home instead of experiencing extended hospital stays.  Actually it is much much more.  There is a system of checks and balances designed to catch the minute changes that can cause problems.   You see your cardiologist and nurse practitioner weekly if not more, ultimately creating a team that knows every little nuance about your child.  You are at home letting your child use his/her own toys to develop, learn to crawl, walk, sleep uninterrupted, etc.   Finally, being at home with limited visitors and limited (none actually) outings is the ultimate protection from illness.  During such a critical stage in the cardiac repair process, you’re creating the best environment for your child.

Both Jenifer and I agree that being in this program was not easy.  Most children are in it for a 2-3  months on average, and we were a part of it for 12 months.  Kaleb did not eat at his first restaurant,  visit his first grocery store, or meet some of his relatives until he was over a year old.  However, he survived, and when he was at his most critical was during the cold and flu season.  Staying home and consistently assessing him during this time did save his life!

With all this said, we want to have a fund raiser to help this program thrive, encourage the program to grow, and expand to offer care for different levels of cardiac defects.  Please watch the 5 minute video of our story and how this program benefited us as a family. http://www.youtube.com/watch?v=oZtSz0oJwcM

Please give any amount you can and know that your contribution is giving a cardiac child the opportunity to live a long and healthy life! 

We have set up the donation through Children’s Medical Center’s website so that you can get a tax receipt.  You can go to www.childrens.com and click on “give now” at the top of the page or click on the following link https://netcommunity.childrens.com/netcommunity/sslpage.aspx?pid=987

Under the donation information click on the down arrow on the designation and type in the following:  Cardiology; Safe at Home.

You may also contact Ann Davidson with Children's directly.
ann.davidson@childrens.com or 214.456.5339
 
 
Below are some key points to the program:

FACTS:

-1/100 infants born each year are affected by CHD (cardiovascular heart defect) and is the leading cause of death in children <1 year old

-CHD is the most common birth defect in America

-However even though 1 child born every 15 minutes with CHD research remains grossly underfunded. The government spends only a fraction of a penny directed towards CHD research

CHILDREN'S SAFE AT HOME PROGRAM:

-It was started 2 years ago

-Currently there are 41 children who have graduated, 18 enrolled (outpatient as we speak), and 4 additional babies in the CICU who need to be enrolled.

-Patients who are enrolled: BT shunt (all), Sano, and PDA stents

-Mortality prior to starting program 17-22 and now 0.98

PROGRAMS INTENT:

-The program was designed to decrease inter stage mortality/ morbidity of the highest risk patients in cardiology

-Children’s is part of the NPC QIC (national pediatric cardiology quality improvement collaborative) But started there own safe at home program prior to joining the collaborative.

-Children’s has added and improved our program based on meetings and what other centers are doing to improve our program

COST OF PROGRAM:

-Cost of equipment was previously donated by Hearts of Fire.

-Scale, pulse ox and case is roughly $1,000 per child

-On call (24/7) Nurses do not get paid to run this program.

BENEFITS OF THE PROGRAM:

-Early detection of illness to prevent big problems

-24/7 PNP (pediatric nurse practitioner) on call for questions

-Outpatient and inpatient protocol to help detect problems with ECHO EKG and declining saturations or weight

-Allow children to be home and not in the hospital where growth and development is better

FUTURE DEVELOPMENTS OF THE PROGRAM:

-Family/ parental advisory board (Jenifer and I would want to be a part of this!)

-Telemedicine/ skype/ facetime to help better answer questions or parental concerns

-On-line documentation of binder and myspace

-Safe in house: patients who cannot get out of the hospital d/t lack of social support or medical necessity; how do we keep kids safe in the hospital

-Safe at home lite: patients who do not meet specific anatomical requirements but need very close monitoring secondary to complex medical conditions in additional to CHD

WHAT YOUR DONATION WILL BE USED FOR:

-Equipment (Scale, pulse ox, and case)

-Parental involvement in program (family/parental advisory board)

-Travel to NPC QIC conferences

-Facetime or skype; a safe at home iPad and blackberry for PNP

-Develop a safe at home app (currently there is a lot of money and effort spent producing a binder that families must keep all of the data in.)

-Growing program so more children can be a part of it.