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Vol. 3 Number 2 May 1999
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Newsletter HOME • NEWSLETTER • CONTACT US
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Vol. 3 Number 2 May 1999 |
Hershey Hearts is committed to supporting, helping, and educating families of children with congenital heart disease. This is achieved through meetings, newsletters, and a visitation pro-gram. Our aim is to strengthen families during their long journey from despair to hope.
March Meeting Review
Approximately 35 parents and 23 children attended the Hershey Hearts group meeting on March 20th. The first guest speaker was Sue Espenshade, the coordinator for the parent resource room at the Hershey Medical Center. Sue spoke to the group about all the parent groups and Internet sites available and provided a packet of information to help guide parents in finding health information on the web. A copy of the information packet can be found in the Hershey Hearts folder located on the 7th floor of the medical center in the parent resource room. This information packet also contains Internet links and suggested reading for parents and children.Bryan Keller, the second guest speaker, is 18 years old and a junior at Eastern Lebanon County High School in Myerstown. For his senior project, Bryan would like to do community service with cardiac patients since he himself was born with a congenital heart defect. Bryan chose to start by speaking with parents and children of Hershey Hearts. Attending the meeting with Bryan was his parents, Wendy and Mike. This was an unique opportunity for the Hershey Hearts group to talk to a teenager that has gone through what our children have yet to face, and for the group to talk to Bryan’s parents about what they experienced. Bryan did such a great job talking to the group that we asked him to write the Pediatric Corner article for this issue. One comment that Bryan’s parents stated more than once was that we are lucky to have such a nice support group. When they went through it 18 years ago they really had no other support except that of the hospital staff. Hershey Hearts invited the Keller family to join the group and come to the July picnic. We hope they take us up on our offer. Thanks again Wendy, Mike, and especially Bryan!!!!! (Look for Bryan’s article in the Pediatric Corner section located on page 3 of this newsletter.)
Next Meeting – Picnic
By Bob Garvin – Picnic Chair
The 3rd annual Hershey Hearts Picnic will be held on Saturday, July 10th from 11:00 a.m. until 3:00 p.m. The picnic will be at Shank Park, There will be Hershey Hearts signs posted from the medical center to help you find your way. At Shank Park we have been instructed to park in the center parking lot, with overflow in the upper parking lot.
Please bring chairs, a covered dish and/or a dessert. The Pediatric Cardiology Department will provide hamburgers, hot dogs, silverware, plates, napkins, cups, and drinks. We have the picnic shelter from 11:00 a.m. until 3:00 p.m., and will eat at 12:00 noon.
A fun day is being planned by the picnic committee, which will include clowns, face painters, a magic show, and a petting zoo. We will also conclude the Heart Beat Auction. Hershey Hearts will also be getting visitors from the Bike Riders Enjoying Weekends Club (BREW). The BREW club is holding a Poker Run Fundraiser on June 5, 1999 and would like to stop by the picnic to present Hershey Hearts with a check from the Poker Run. We look forward to meeting the BREW members.
Please call 1-800-864-2349, mailbox #3388, by Friday July 2nd to let us know how many children and adults will be attending the picnic. You should also call this number on the morning of July 10th to find out the picnic status. There will be a message on the 800 number if the picnic is cancelled due to inclement weather. There will be no rain date for the picnic.
Let’s make the 3rd picnic the best ever. Please come and join in on the fun and fellowship! WE HOPE TO SEE YOU THERE !!!
Heart Beat Auction
The Heart Beat auction will take place the week of July 5-9, 1999 and conclude the annual Hershey Hearts Picnic on July 10, 1999. The fundraising committeee4 is still asking businesses and individuals to donate products and services (gift certificates) for the auction. Heart Beat Auction will be held in room H-1260 at the Hershey Medical Center, which is in the main corridor from the entrance to the cafeteria. The prizes will also be displayed at the picnic. You will be able to buy tickets at the hospital throughout thew week of July 5-9 and the day of the picnic to place in the bags of the corresponding prize or prizes that you are interested in winning. One ticket for each prize will be drawn at thew picnic to determine its winner. If the picnic is cancelled due to inclement weather, prizes will still be displayed at the Hershey Medical Center Saturday, July 10th from 11:00 – 1:00 with the drawing held at 1:00. Prizewinners not present at the drawing time will be notified by telephone to make arrangements to pick up the prize.If you are interested in donating a prize or helping out at the Heart Beat Auction,
please contact Kelly Andre at
kandre@prolog.net. You may include a business card
or advertisement to be displayed with your donation.
The deadline for the prizes has been changed to June 1st. This new date will allow the fundraising committee time to finalize the displays and to make available a list of prizes. It was suggested at the March meeting that this prize list be mailed to the Hershey Hearts members before the auction so that they could solicit family, friends, and neighbors who can not make it to the Medical Center for the auction. Look for additional mailing at the beginning of June!
Baseball Tournament
By Holly Ragan
Hershey Hearts has been chosen as the beneficiary of the Harrisburg Over Thirty (HOT) Baseball Tournament to be held the weekend of October 2, 1999. The HOT Tournament is the 3rd largest regional tournament of it’s kind held on the East Coast. The tournament draws about thirty-five baseball teams and their families from all over Pennsylvania, Maryland, New Jersey, and New York.
Hershey Hearts has been asked to solicit field sponsors for the tournament in the amount of $500 dollars per field. This money is a direct donation for Hershey Hearts. In return for the donation, the HOT Baseball Tournament will print the name of the business on approximately 500 t-shirts that are distributed to the teams participating. HOT will also post the businesses’ banner at the field of sponsorship. Hershey Hearts will also acknowledge the business in its November newsletter. There are also two other types of sponsorships available… a $5,000 Corporate Sponsorship and a $250 Umpire Scholarship.
If you would like more details about the baseball tournament, or know of an establishment which would like to take advantage of this unique opportunity to donate to Hershey Hearts, please contact Holly Ragan at hragan@worldnet.att.net.
A Letter from the President
By Rich Reisenburrow By Rich ReisenburrowSince the February 1999 newsletter a lot of things have been going on. We applied for our tax-exempt status with the Internal Revenue Service on March 8, 1999. On April 19, 1999 I personally spoke to an IRS representative concerning our application and I am happy to say that as of that day we have been granted our exemption. The application is still open for review, however it has been recommended for approval. I had mentioned in the last newsletter that Hershey Heart’s goals would be discussed at the March 20, 1999 meeting, but that discussion did not take place. So I have included the list of goals that were gathered for your review and consideration. We would like to hear you’re input about the goals and motion for a vote at the picnic.
Goals:
One other change that has taken place since the last newsletter is the position of treasurer. Regretfully Dawn Snyder had to resign her position. In order to fill this important position we turned to Tom Teeter who expressed an interestTo reach families of newly diagnosed children with congenital heart disease and provide encouragement and a support network to strengthen them.
To make available books, materials and Internet access necessary to educate families of children with congenital heart disease. To increase attendance at the meetings and the annual picnic. To increase the number of volunteers at Hershey Hearts. To raise funds to provide programs assistance, and contributions to enhance the quality of life for families of children with congenital heart disease. To conduct activities within the Hospital and Ronald McDonald House for families. To purchase items that would improve the current medical facilities at the Medical Center To purchase a vehicle that would allow the cardiologists to provide the same quality care at the thirteen clinic sites. To sponsor or aid in sending a cardiac team on a mission trip to another country. To solicit or purchase items to give to patients and/or families (tickets, gift certificates, financial support).
- To secure space within the Hospital for families to keep their belongings or to rest while their child is in ICU.
Treasurer’s Report
By Tom Teeter
As announced in our February newsletter, we have opened our bank account and I am happy to report that we have received our first donations, totaling $225.
We have also acquired a post office box that will become our new official address and will be used to receive all mail, including donations. The new address is: Hershey Hearts P.O. Box 163 Hershey, Pa 17033-0163. If you know of anyone who is interested in making a donation, please have them use this new address.
Pediatric Corner
By Bryan Keller
At age 18, I feel as if I have a normal life. My congenital heart defects have not stopped me from doing anything I’ve set my mind to. Whenever someone said, "are you sure you should do that?" I just went ahead and tried it anyway.
I am not treated any different than anyone else. My friends know about my surgery, but I don’t believe that too many other people in our area know about it.
At football practices and games, I am hit just as hard as my teammates and I hit them hard also! The coaches don’t give me any special treatment, nor do my opponents.
As for my scar – I don’t hide it and no one stares at it. When I was younger, I was afraid to show it, but now it’s just a part of who I am. Some people ask what it is from , I tell them and that’s it.
My heart condition is not something I dwell on, nor do I use it to "slide by" on anything. I was born with it, but it does not define who I am. I feel I have accomplished much more than anyone would have imagined I was capable of and I am very proud of that fact.
I am looking forward to continuing my education after high school and continuing with football (if my knee holds out!). I’ve come this far, there’s no telling what more I can do!
"What? When? Why?"
By Mary Lou Box
Your child has had their heart repaired. Soon after they reach the Intensive Care Unit, someone begins talking about going home. "But It’s too soon" you say. No longer do we have the luxury of weeklong stays in the hospital to recuperate. Most children with uncomplicated recovery from heart surgery are home within 4 to 5 days. The hospital is not providing the child with anything more than what their family can do in their own home-food, rest, undivided attention and loving care. As well, by lengthy hospital stays, children are more prone to get hospital-acquired infections from other children, staff, tubes, IV’s and machinery. Because discharge is very early, little time is available to provide extensive teaching. Attention to information you may need to care for your child at home becomes a priority. Following are some common questions asked by families as they prepare for transition from hospital to home.
Will there be stitches that need to be removed? Most incisions are closed with invisible sutures (stitches) that dissolve as the wound heals. Some of these sutures may "poke" through the skin and look little pieces of spaghetti. The sutures will dry out and fall off. Sometimes the area around the suture looks a little red with a yellow center- this is just the suture trying to get through the skin- not usually an infection. If you notice that clothing irritates the suture, a Band-Aid can cover the area during the day and be removed at night to allow for air drying and healing. The top and/or bottom of the incision may look a little redder than the center of the incision. These are the areas where knots are placed and may take longer to heal. The wound should be cleansed daily with soap and water. Report any of the following changes at the incision area to the surgeon- increased redness skin around the incision is hot to touch, drainage (pus or pockets of fluid) fever over 101. What can my child do at home? Moderate activity and exercise are needed for complete recovery. Allow your child to gradually increase activity as he/she can. For 1 to 2 weeks, do expect your child may need more frequent rest periods or naps. "Couch-Potatoes" are not allowed. The child should be up and active. This will help healing and improve strength and energy. Most children can have visitors. Child visitors and family members with colds and illnesses should refrain from "hugs and kisses". Until your child is well healed, he/she may be more susceptible to getting other illnesses. It is recommended that you don’t take your child into crowded areas, such as church nurseries and malls, for about 4-6 weeks. All of the following activities should be avoided for about 6-8 weeks: activities that stretch the arms (swinging, hanging from or climbing trees; using parallel bars or gym sets; therapy exercises that require pulling of arms or trunk; lifting under the arms, roller skating, skate boarding, ice skating, sledding, swimming, lifting weights, small children and pets). Contact and competitive sports are restricted for approximately 3 months. When can my child return to school? What should I tell the school? Most children can return to school within 2-3 weeks of discharge from the hospital. Some may to return half days at first to increase stamina and energy. Getting back to familiar activity and friends is healing too. Your child can go out for recess activity but will not be allowed gym classes for approximately 3 months until the breastbone is well healed.If your child will need to take medicines during school hours (we try to avoid this!), the school nurse must receive the medicine and instruction for each medicine. Excuses for absence from school, special medicine and activity instructions can be given to you at discharge or at a follow-up clinic appointment.
What can I give my child for pain, fever, colds? Care must be taken to avoid over-the-counter medicines for children with heart conditions. It is best to check with your family doctor or cardiologist before giving anything other than what has been prescribed. The following are medicines, available in drug stores, which can be used for colds, fevers, and pain without reacting with heart medicines:Pain and fever
Tylenol Infant Drops, Elixr, Tablets, Motrin, Advil, Naprosyn – dose determined by the doctor. Avoid aspirin products unless specifically prescribed.
Colds
Benadryl, Dimetapp plain, and Robitussin Plain (without DM): many cold preparations have stimulants in them that can increase heart rate and may aggravate some heart problems.
Immunizations-(Baby Shots)
All children should be kept up-to-date with immunizations (baby shots) to avoid the risk of serious illness complicating their heart disease. Schedules for baby shots can be adjusted for illness and surgery. Common childhood illnesses such as measles, mumps and chickenpox
Can usually be treated as with any other child. If your child has had a heart transplant, measles, Mumps and chicken pox can be life threatening. Contact your cardiologist if your child has been exposed or has the disease so the treatment can be started.
Antibiotics:
Most children with heart defects will need to take preventive antibiotics before dental work, certain operations and procedures. Amoxicillin is the most common antibiotic used if your child has no allergy to penicillin. Other antibiotics are available for children with penicillin allergies. It is always good practice to mention to health care personnel that your child has or has had a heart defect, so they may give appropriate treatment before procedures. Usually a single dose of the antibiotic one-hour before dental work or procedure is recommended.
Will my child need to take medicines at home? Most children will need to make medicine for some time after surgery. It takes awhile for most children to eliminate the fluid they received during surgery. For this reason diuretics or "water medicines", are given to help them "pee" some of the fluid away. Using these diuretics will make diapers wetter and may cause "accidents" in children who have been potty trained; or make older children frequent the bathroom more often (teachers should be told this!!).Other medicines that are commonly used after surgery are Digoxin, which helps the heart pump stronger and Captopril or Vasotec, which lowers the blood pressure so the heart can pump and empty more effectively. All of these medicines should be given until your cardiologist or surgeon tells you to stop. The child’s heart problem and recovery determine how long your child will take these medicines.
When does my child see the doctor again? Usually the surgeon will see your child once a week after discharge to check the wound and the cardiologist will see your child about two weeks after the surgical visit to resume regular care and visits. It is recommended that you see the child’s family doctor or pediatrician within one week of discharge so he/she can see how your child is doing. What should I watch for, who do I call with questions, or in an emergency? Contact your family doctor or the cardiologist if any of the following occur:A cardiologist is on call, 24 hours a day. In an emergency, call the main hospital number (717-531-8521) and ask for the cardiologist on call. For routine questions or concerns, the Clinical Nurse Specialist (Mary Lou), Nurse Practitioner (Penny) or Social Worker (Warren) can be reached weekdays 9AM-4PM at 717-531-8674.
Knowing how to care for your child, what to expect, what to do, and who to call, will, hopefully, make the transition to home more comfortable, less frightening and an eagerly awaited time for the whole family. Our goal is to return your child to you as soon as it is safe. Always! Always! Always! Remember! No question is too silly to ask. If it concerns you, it concerns us!! Happy Homecoming!!!!!!
Family Portrait
By Lisa Hoffman
PortraitBy Lisa Hoffman
| Laurie and Don Ensmiger of Dover, Pennsylvania, had their fourth child, Conner, at York hospital on December 27, 1999. Before being discharged his doctor heard a heart murmur, and ordered an echo cardiogram done be done. It showed that Conner had a small VSD. The Doctors, not being overly concerned, sent Conner home with a follow up scheduled at Hershey. Once home Laurie felt strongly that something wasn’t right, and saw Dr. Zachary during a York clinic visit. Dr.Zachary then sent Conner to Hershey to be admitted. During a six-day stay tests confirmed a large VSD and also a w-outlet right Ventricular. Conner was sent home on medications. Once home he started refluxing and feeded poorly. Conner was back at Hershey a few days later with surgery scheduled on March 8th. Conner went through the surgery fine, and was home after a few days recovery. |  |
Laurie said that the hardest part was the helplessness of knowing that something was wrong and being unable to do anything. Although both she and Don were able to take comfort in the excellence of care given by the nurses and doctors.
Conner is now doing great and his three older sisters (Melanie 9, Courtney, and Hayley 5) enjoying "mothering him".
Visitation Program
By April Weaver
The visitation program continues to be a rewarding endeavor for our volunteers and the families we visit. Many thanks to all of you who volunteer your time for sharing and caring. If there are any families who would like to participate in our program please contact Judy Byrne at heyjudeb@aol.com or April Weaver at nontradmom2001@netscape.net for more information.We will be compiling our next visitation schedule for June 1999 through December 1999 in the near future. Current volunteers who do not wish to participate in the next schedule rotation should contact Judy or April as soon as possible.
We have new additions to our visitation program – permanent ID badges to replace the stick on badges currently used! The badges and the Badge holders (donated by Rich Reinsburrow) will be in the portfolio that you pick up at the Information Desk. Our badges were created and donated by Kelly and Michael Andre. A great big THANK YOU to Kelly and Mike for a job well done --- they look GREAT!
Hershey Hearts Highlight
This article is one in a series that highlights the Hershey professionals helping our children.
| Jeff Gillette is the Chief Flight Nurse working on the Life Lion Crew for PennState Geisinger Health System. Jeff earned his Bachelors Degree in nursing at PennState University. To be part of Life Lion crew as a flight nurse, candidates need to have pre-hospital experience, paramedic certification, advanced cardiac life support certification, and neonatal training. All flight team members have completed advanced training in the care of the critically ill, trauma, and airborne transportation and resuscitation techniques. The crew of the Life Lion continually attends seminars to keep up and remain on top of their education to ensure they are ready for each and every flight. Their goal is to give the patient the same care they would receive in the PICU or NICU while in flight to the hospital. This education combined with the equipment that is on the aircraft help to achieve this high quality of care. Jeff gave credit to the Children’s Miracle Network for purchasing some of the equipment on the Life Lion. |  |
When a call comes in it is taken by the Communications Center, which is staffed 24 hours a day. The Life Lion Crew is then dispatched to the hospital or trauma site. The crew of Life Lion includes a pilot, a flight paramedic, and a flight nurse. These three positions are always at the helicopter hanger ready to go when a call comes in. Other hospital personnel are on call to join the flight when necessary. There is a helicopter ready to go 24 hours a day, seven days a week. There are 3 helicopter sites: Danville, Bellefonte, and Hershey. Hershey and Danville both have one helicopter on duty 24 hours a day. Hershey and Bellefonte have an additional helicopter during peak hours to ensure a crew is available if needed. These three sites not only service the PennState GeisingerHealth System, but also work with other hospitals in the area such as York, and Lancaster. The Life Lion’s flight range is 150 miles and takes s 7 minutes to fly 20 miles. Jeff said approximately 50% of their work load is inter-hospital transports with the remaining 50% being on site traumas.
As the Chief Flight Nurse, Jeff works closely with Chris Pugnetti and Rick O’Neil. Rick O’Neil is the site administrator who is in charge of running all helicopter sites and Chris Pugnetti is in charge of all the maintenance of all the helicopters. This includes preventive maintenance and Jeff explained every 500-flight hours the aircraft is broken down and checked. Keeping track of the hours and doing the maintenance is very important. Jeff stressed that it takes many people to enable the operation to run smoothly.
When asked what he enjoys most about his job, Jeff responded that it is a challenge. He gets fulfillment out of the patient care, but it is constantly a challenge because every situation is different. There are never two cases that are identical. Even though Jeff has his hands full as chief flight nurse, which entails management duties, he tries to go on as many flights as possible.
The hardest part of his job is the deaths that occur. He has a hard time with the cases that involve pediatric cases, especially when the injuries could have been prevented or lessened with wearing seatbelts or wearing bike helmets. "Prevention is something very important that the public to know", says Jeff. It is so important that Jeff spends a great deal of his time educating the public about prevention!!! "Kids (and Parents) – wear your bike helmets and seat belts!"
When Jeff is not flying around, he enjoys riding his two Quarter Horses and spending time with his family. Jeff has been blessed with two children – a boy (5 years old) and a girl (3years old). Jeff thanks for all that you do!!!!!!!!
Special Thank You
Hershey Hearts would like to thank three businesses for their generous donations: P&J Printing, for the donation and the printing services provided for the letterhead, brochures, and this newsletter. Hershey Hearts would like to personally thank Sharyn, Roy, and John for helping us get started! P&J Printing is located at 549A West Chocolate Avenue in Hershey Pa.Digital Fusion Inc., for donating their services to build and host the Hershey Hearts web site on their server. Digital Fusion Inc. is located at 315 E. 2nd Street in Boyertown PA. Check their web site at www.digifusion.com.
Andre Farms, whose donation funded the production of this issue of the newsletter. Andre Farms is located at Philadelphia Ave. (RT 73) in Oley PA.
If you get the chance to visit these businesses, please give them a personal thank you for all that they have done for Hershey Hearts.
Coming Events and Reminders
Mark your calendars for the following events in 1999: