Pediatric Cardiology - Parents
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• Preparing Your Child
• Blood Transfusion Options
• For Your Information
• Remember, label everything!
• Intensive Care Units
• Surgery
We would like to say that we know what a hard time this is for parents and we know all the anxieties you are feeling. Every child is different, especially depending on what type of surgery they're having and their age. We can only give you some insight on our experience and hope that it might ease some of your fears and help you through your child's surgery.
The day of Sam's surgery was very hard. Waiting to hear it was over seemed to take forever. When we got the call ITom Dr. Permut that it was over and went well and she would be down soon we were relieved but still scared of what we would see when she came off the elevator.
When she came off the elevator she was asking for water which surprised us. We thought she would be sleepy. They took her into ClCU while we talked to Dr. Permut. When we went in to her room we could still smell the anesthesia coming out of her and there were chest tubes connected to containers at the bottom of the bed that are pretty noisy. There are a lot of people in and out for the first couple of hours and a lot going on you don't understand The most important thing you can do is just smile and be there for your child. The nurses do an unbelievable job taking care of your child even if that means getting them sitting up and out of bed" which for some kids is the last thing they want to do.
Samantha had a rough couple of days in the hospital. She was very nauseous and didn "t really want to eat which made it worse. She had her surgery on a Wednesday morning and we came home that Sunday. After a couple days of being home she snapped out of it and was back to her old self By her 2 week check up it seemed as though she never even had open-heart surgery. Sam is in first grade. She was back in school a month after surgery and in May she ran the mile in gym class in 11 minutes.
As hard as it seems think ahead while all this is going on because before you know it a few months have gone by and everything is back to normal.
Pre-admission Tests
Most children are admitted to the hospital the morning of surgery at about 6 am Occasionally there may be a medical reason for your child to be admitted the night before If this is the case, we will discuss this with you and make arrangements with your Insurance company.
For children being admitted the morning of surgery, a pre-admission test appointment will be scheduled for approximately five to seven days before the surgery date This appointment will last about three hours. It will Include a pediatric check up by our nurse practitioner, a chest X-ray, a consultation with an anesthesiologist and a blood test You may also see your child's pediatric cardiothoracic surgeon at that time to answer questions and sign the surgical consent form This visit IS also a good opportunity to have a tour of the hospital with our Child Life staff.
Preparing Your Child
It is very important to prepare your child for his or her upcoming hospitalization and surgery Children of all ages cope better when they know what to expect Your child's age will help in determining how far in advance they need to be prepared Children three and under should be told one or two days in advance. Children four to eight years old can be prepared five days to one week in advance. Older children and adolescents should be told at least two weeks ahead of time.
Preparation tours of the Children's Hospital Pediatric Units and the Pediatric Intensive Care Unit (PICU) are available and recommended The tour consists of a walk through the units where your child will stay, and a chance for him or her to touch and play with some of the medical equipment that he or she will see. Children get an age-appropriate explanation of what they see. A multi-sensory approach IS used in preparing parents and children, emphasizing what children are likely to experience (see, feel, hear and smell), and how they can participate in and cope with their surgery and hospitalization. Siblings may be included in this as well. These tours can be scheduled when you are here for pre-admission tests or at another time.
There are many children's books that deal with a hospital experience These books can be found in your library or purchased at most bookstores. Good ones include
- Curious George Goes to the Hospital, by Margaret Rey. Houghton Mifflin. Ages 4-8
- A Visit to the Sesame Street Hospital by Deborah Hautzig, Dan Elliott and Joseph Mattieu Random House Video available.
Also available in Spanish. Ages 4-8. - Franklin Goes to the Hospital by Sharon Jennings and Brenda Clark. Scholastic Trade. Ages 3-8
- A Trip to the Hospital (Little Bill) by Kim Watson and Mark Salisbury. Simon Spotlight
If you have any questions or would like to discuss preparation In more detail, call Tricia Hiller, the Children's Hospital Child Life Director, at (914) 493-1687.
Blood Transfusion Options
Although every effort IS made to avoid it sometimes it may be necessary for your child to have a blood transfusion during surgery listed are some options available:
- Homologous Blood (Blood Bank) Compatible, thoroughly tested blood from the hospital blood bank will be available and prepared specifically for your child prior to surgery This blood will be on hand should a transfusion be necessary before or after surgery Most children require no transfusions.
- Directed Donor Blood. If you choose, you can have "directed" donor blood prepared for your child prior to surgery. This option allows you to select your own blood donors i.e. family members and close friends. In order to prepare for directed donor blood, please follow the steps listed:
- Find out your child's blood type. We may have this information already. Please call Nancy Schiff at (914) 594-3281 to find out. If you do not have that Information, you should check with your pediatrician about obtaining this Information.
- After you receive a surgical date, call Hudson Valley Blood Services at 1 (800) 439- 6876 to set up appointments for your donors The Blood Bank must receive the donations five (5) business days before the operation and not more than one (1) month in advance. You will need one to three donors.
- The surgery office (Pediatric Cardiothoracic Surgery) will send a referral to Hudson Valley Blood Services. If they haven't received the referral, call the surgery office at 914-493-7676.
- When donating blood, your donors will need proof of their blood type.
- After directed donations are made, the blood will be tested and sent to Westchester Medical Center in the event your child needs a transfusion.
- Directed donor blood can be saved for 28 days
- Check with your insurance company as not all reimburse for directed donation. If your company does not cover the cost of this service, the cost to you is approximately $100 for each donation.
If you have any questions, please call the surgeon's office at (914) 493-7676.
Make sure you review your insurance company procedures regarding surgery well in advance, particularly any prior approval requirements from health maintenance organizations. It is best to take care of this as soon as possible.
Parking at the Westchester Medical Center Visitor's Lot is $5 a day. There is a long-term parking pass, which costs $32 per month. If you are here more than six days, it IS worthwhile to purchase this pass. You can make arrangements for long-term parking with the parking manager at (914) 493-7932.
For Your Child:
- Bring your child's favorite stuffed animal and/or security blanket
- Bring comfortable pajamas, slippers and a familiar pillowcase
- Bring a tape recorder and tapes (audio and video), books and quiet games (without too many pieces.)
- Telephone numbers you may need . Money (not a lot; bring change)
- Telephone credit card
- Books and magazines
- Notebook and pen
- Walkman and tapes or CDs
- Toiletries
- Cell phone use is not allowed Inside the hospital
- Familiarize yourself with the layout of the Children's Hospital. Find out where the bathroom and shower and playroom are
- If you are nursing, ask for the location of a breast pump. One of our nurses can assist you and help you find a private spot to pump.
- Remember, the Children's Hospital at Westchester Medical Center, the university affiliate of New York Medical College, is a teaching hospital where the most advanced care is available. This also means that there will be many people wanting to meet you and your child, ask questions, and examine your child These people are house staff (pediatric interns and residents), medical students, nurses and student nurses It helps to make sure each of these people introduces themselves to you and your child and explains who they are and what they are doing. All of these people are under the supervision of your attending surgeon or cardiologist None act without permission from the attending, senior physician.
There are three pediatric intensive care units (PICU) in the hospital. One is a large intensive care unit (ICU) located at the end of the hall on 3 North. One IS a "step-down" unit for intermediate care. The third IS the Pediatric Cardiac ICU, which is room 359 on 3 North. Most of our surgical patients are In the cardiac ICU This ICU also serves as a step-down unit for our surgical patients and most children are discharged to home from this unit All of our ICUs are designed and equipped to give your child the type of specialized care they will need after surgery.
As many of you are aware, we are building a new Children's Hospital. Our current ICUs do not have room for you to sleep next to your child but the new hospital will have this capability You may stay over night in the parent's lounge or go home and come back in the morning. The visitation hours in our ICUs are 24 hours per day, 7 days a week. You will be asked to step out of the room tWice a day when the nurses are giving report Parents and grandparents are permitted to visit two at a time.
Surgery
When your child goes to the operating room, he or she will receive special sleep medication from an anesthesiologist who is very experienced in pediatric heart surgery You may stay with your child until he or she is asleep. You will then wait In the pediatric intensive care unit waiting room on the 3rd floor.
After your child is asleep, the monitors, IV lines and technology necessary for surgery will be put Into place. These include a heart monitor, a breathing tube, IV lines and a Foley catheter. When you see your child after the operation, he or she will still need most of these and also will have chest tubes and temporary pacemaker wires.
A pediatric cardiothoracic surgeon and the ICU nurses will explain what these tubes and wires are, what they are for and most importantly, when they will come out!
Heart surgery takes several hours. The surgeon will tell you approximately how long he thinks the operation will take. Remember, this is an approxlmation!
During the operation you will walt in the parents' waiting room When the actual repair part of the surgery is over and your child is off the heart-lung machine (you may hear this referred to as "off the pump"), you will get a call in the waiting room to tell you this. When your child is ready to leave the operating room, he or she will be brought to the pediatric ICU You may see your child as he or she comes off the elevator. He or she then will be taken to ICU.
While your child is getting settled in the ICU, the surgeon will come out and give you the details of the operation and will tell you about your child's condition. The ICU staff needs about one-half hour to get your child settled in the ICU They will tell you when they are ready to have you come in. Your child may be asleep or alert and talkative. Most children have no memory of this day, even if they are awake and alert in the ICU. You may see some swelling around the face, particularly the eyes. This is normal and temporary You will see the tubes and wires that were put in during surgery. Your child may still also have a breathing tube in place.
As parents, you playa crucial role In the healing process. Even while your child IS still asleep you should talk to him or her, touch a hand (or foot) and gently stroke her or him Your child will sense your presence and be comforted When your child wakes up, seeing a smile from you will reassure her or him that everything is OK!
As your child recuperates, one by one, the lines and tubes will be removed and he or she will feel much better QUiet games, books, and TV are great for the first days after surgery You will meet a Child Life Specialist who will have suggestion for activities and can supply games, tapes, videos. and even Nintendo!
Most of our patients are discharged directly from the ICU, which also functions as a step-down unit Occasionally, a child will no longer need ICU care, but will need to remain with us a little while longer In that case, he or she IS transferred to a regular room on the pediatric floor.
The following are names of members of the pediatric cardiology staff, pediatric cardiothoracic team, pediatric ICU physicians and Child life staff. During your child's hospital stay, a pediatric cardiologist will be "on service" to evaluate and supervise your child's dally progress. This may be your child's primary cardiologist or one of his or her colleagues. Your primary cardiologist will also visit you and be involved in your child's care. A pediatric cardiothoracic surgeon will supervise every aspect of your child's care during his or her hospitalization There will be many people Involved In your child's care. Everyone will strive to make this a comfortable and positive experience!
Pediatric Cardiothoracic Surgical Program (914) 493-7676