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Living with an Ill Child
Connecting With Other Families There's one family that we were referred to when I was pregnant with my son. We have become best friends. Other families have been referred to us who have had sick children. That's been good and bad. It's been wonderful, but it's also really hard. The babies of several of the families, that we were connected before my son's surgery, died. One was very, very critical for a long time, even after Jake came home. I think timing is everything and that it was a hard time to be linked with other families when we were trying to prepare for Jake's surgery that everyone kept calling "the big one." It was like this huge surgery. Surgery with a two year old is I think harder in a lot of ways. It's never easy, but when a child has been with you for two years, and is such a part of your life, the thought of losing them at that point is so much worse than as an infant. My twin boys Travis and Tyler Tripp were born on July 6, 1997, 11 minutes apart. My husband and I were so happy being first time parents and only 22 years of age, also having twins. At birth they were both healthy little 5 pound 4 ounce babies. We were all sent home four days later, and did well at home for two weeks. In the third week, my son Travis got sick with flu-like symptoms, which then worsened. While this was going on, I was taking him to doctors and they were trying to pinpoint the problem. Finally, after a bunch of tests, they found he had piloric stenosis, a minor stomach problem. My husband and I took him to a bigger hospital to get it fixed. After we got there, the doctors examined Travis and found he had some heart problems. He needed to go to a bigger hospital to get better care with cardiac doctors. There they examined him and found more serious airway and heart problems, and almost lost him in the operating room. Then the doctors there felt that he needed to be here at Children's Hospital. My husband and I are an emotional wreck going to this big hospital not knowing one day to the next, worrying so very much about Travis and his health, trying still to take care of Tyler, who is well. When we arrived here, the nurses were great, and the doctors too. Then we met Sarah Lualdi, the social worker, and Carmen. They helped us cope with what Travis was going through; they were always there to listen when my husband and I were having a hard time. We also attended the parent groups. We listened to other parents in our situation and even shared our story with other parents. All the nurses, doctors, Sarah and Carmen,and the parent groups help us cope and get through this rough time. Also, just having my husband and family was great. Travis has been here for four months now and doing great. It's almost time to go home, thanks to all the very nice and caring people here at Children's Hospital. Heart Transplant: Then and Now When my son had his first heart transplant we had no place to go for help. We worked very hard with the staff and we all learned. Nobody was sure of anything and it was hit or miss in the beginning. There just seems to be so much information coming at you so fast and you think you can't cope. You end up doing far better than you imagined. You are surprised you can do so much. The stress I thought was the thing that would be bad and it was. This site wasn't available then. It was just us and the staff. We ended up not doing too bad. Sixteen years two transplants and he's still going strong. A lot changed in the 13 years between transplants, there are far more resources available to the families. Things move quickly now. It was a month in the hospital in 86. In 98 we got to leave in 6 days. Big difference. Good luck. Ryan was six months old when I adopted him. He had already had three surgeries to correct various birth defects. His primary defect was with his heart. He was born with tetralogy of Fallot. He would face many surgeries in the years to come. When I first came to the hospital with Ryan, I was amazed to realize that everyone on the cardiology unit knew Ryan. He was like family, not just a patient to them. I have many other children so I wasn't able to stay with him at night and many times during the day I would have to leave him to care for my other children. I used to think only a parent could understand how difficult it is to leave your sick child alone in the hospital. I was wrong. The nurses and doctors were always supportive of our family and made things easier for Ryan to see me leave. Often times I cried half of the way home because I was torn between my need to be with Ryan and the need to take care of my other children. Sometimes I would get a call on my cell phone before I even got home to let me know that he was fine. Ryan would visit the nurses' station, go to the playroom or visit with a volunteer to pass the time while I was gone. As he got older, in the middle of the night he would call me to talk about pain management (an arrangement he and I made often). A nurse would be there with him and we would decide what to do next. He never asked me to come back to the hospital before morning unless he needed me. Tests were scheduled for times when I could be there. Whenever possible, even for blood draws, he would ask them to wait for me. When they could wait, they did. Ryan has spent a good deal of his young life in the hospital. He has experienced more in his 11 years of life than most of us could imagine in a lifetime. He will likely face much more. Both Ryan and I always feel fortunate that he has his family at the hospital. Ryan has always been my HERO. I admire his courage. I envy his ability to cope. I am proud of his ability to live his life to it's fullest. I am thankful he has shared his life with me. The doctors, nurses and support staff at the hospital have made it possible for us to continue to enjoy life with this wonderful little person. - Ryan's Mom My heart was broken on the day may daughter was found to have a heart problem. I thought if I closed my eyes the problem would go away. This closing of my eyes shut out the world but did not solve the problem. Only the children's hospital in Boston could fulfill this great job. On June 15, 1996, our son was diagnosed with Hypoplastic Left Heart Syndrome. Jeffrey was born June 6th, and we were both home June 7th. Everything went well. In fact, I went back to work June 10th (at our Deli). Jeffrey was a very sleepy baby. I had to wake him up in order to feed him. Many times I had to get him down to just his diapers in order to wake him. When he did nurse, it was only for a couple of minutes. Another thing different with him was that his breathing was fast. He was seen by his pediatrician twice— June 11 and 14, but she wasn't concerned. We were told that was normal infant breathing and that we had a sleepy baby. Well, that Friday evening (the 14th), Jeffrey woke for his evening feeding but he didn't nurse. He just laid there. The next day we went to the Deli as usual. By 11:00 his breathing was very labored, nostrils flared, and his belly was sunken in. I phoned my pediatrician and she wanted to see him right away. After seeing Jeffrey, the pediatrician took him to the area hospital. After doing some tests, they realized it was critical, and Jeffrey and his Dad were taken by Air Ambulance to the ICU of the Children's Medical Center. After doing some tests, we were then told by the pediatric cardiologist, "What he has is not what I thought it was. It's worse. And there are three options and they're all not very good." When I heard that, I thought my baby was going to die and I just cried. We were then told of the three options. At first my husband and I were divided. I wanted to do anything, but my husband was afraid of losing him twice. We talked with the doctors again. After being told that the quality of life was unknown, he could be in and out of hospitals for the rest of his life, the chances of him surviving three open heart surgeries were small, and that the majority of parents choose the comfort care option, we took him home. We didn't think there was any hope and only one choice. At home, I could see that he was hungry. Just because he was dying didn't mean he had to starve to death as well. So I expressed milk and fed him breast milk with a medicine dropper. I did this every time he'd open his eyes for six days. As the days went on and Jeffrey was still with us, I started to make phone calls. My husband was very angry with me and did not want to discuss it. It was very painful for him to talk about. SOMEONE had to fight for Jeffrey, so I very patiently persuaded my husband to at least talk with the doctors from Boston. I phoned Children's Hospital of Boston. After speaking with two doctors there, Tim was finally convinced and phoned me from the Deli and said, "We're taking him in. Call Hartford." When he came home, he walked up to me, gave me a hug, and said, "I'm sorry it took me so long." So, on June 24th, Jeffrey had Stage I of the Norwood Procedure and was discharged on July 8. He had Stage II on January 23, 1997, and was discharged on the 28th. Today, he is seventeen months old and is doing very well. He's into everything, now that he's walking. Jeffrey is our "Miracle Child", not just because he is here after two open heart surgeries for a serious heart defect, but because he made it through all the obstacles. Shouldn't it have been easier? We hope we can make a difference. We hope the Jeffreys of Connecticut can give hope to these pediatric cardiologists, and maybe some day it will be easier for the next parent. Anybody wishing to help, or anyone who would like information can contact: http://www.littlehearts.net/. As I prepare to enter college next fall, I look forward to this new challenge with enthusiasm. I find myself feeling confident of my ability to succeed and to experience happiness in everything I do. Remarkably, the enthusiasm and confidence I describe are gifts to me from my kid brother, my smiling soldier. Colin was born with a cardiac hear defect: his tiny heart was missing its right ventricle. Immediately, the hospital admitted him, and just as quickly, my carefree life flipped upside down. For three years my mother stayed at the hospital night after night, while my older brother Adam and I stayed home with our father. When my mother and Colin finally came home, I hoped that life would be "normal" again. Soon I realized, however, our lives were forever changed. Although Colin came home, he would always have his heart condition and a complicated hearing loss, as well as having to endure the mental anguish of knowing he would never be cured. Despite Colin' challenging prognosis, I could sense immediately that there was something special about him. He was the happiest baby I had ever seen, having a smile chiseled on his face all day long. Sometimes, I would just gaze at his big, blue eyes, revealing a satisfied sense of happiness so mystifying to me. What made him so content? To me, he was the unluckiest boy on earth, yet he continued to smile. Throughout the past fourteen years of his life, I have watched Colin grow into a beautiful person who has taught me more than I have ever learned in a classroom. Colin has taught me about life. His condition has kept him from participating in athletics and other activities that kids his age enjoy. However, he keeps smiling, finds things he can do, and never dwells on what he cannot. He wears bright green hearing aids, letting the whole world know doesn't care what they think of him. He takes his shirt off to go swimming, exposing massive scars that would embarrass most people, but not him. They are just a reminder that Colin has won a battle that no child should have to fight. It is his gift that has prepared me to take on the world and all it has to offer. I am outlining a new chapter in my life. Soon I will leave behind the familiarity of high school and move on to college, a change that is both exciting and scary. I know, however, that no matter what happens, I will be ready. Colin has given me strength, optimism, and inspiration; he has helped me realize that I must never take life for granted. I can proudly say that I possess the confidence to get through anything. I thought Colin turned my world upside down: I was wrong. He merely clarified what's important in life, teaching it with a simple smile, a gift for which I will always be grateful. - Graduating High School Senior's College Essay Our trip to Boston has been one that has taught us the appreciation of what health Jared does have and the health that others don't. Even though at home he is a one of a kind guy, here he is one of the fortunate one of a kind guys. My worries started when he was only 18 months old and we had never met any other pediatric patients that had the same or even nearly similar problems as Jared. Now that our life travels and experience has brought us to Boston Children's Hospital, we understand that others are some what less lucky. With two spinal fusions and one open heart surgery, Jared has only been touched by an angel when I see and talk to the other mothers and fathers whose children have had many more surgical experiences. Although I do not wish my child anymore ill-will than he has already been dealt, I sure do thank God above for all that we have been saved from. Instead of the "Why my son?" questions, I have been doing a lot of exploring with the "Thank you God" side of all this. Jared is one of the fast healing and highly motivated kids and I thank God for that too. We will be going home to New York soon and we will have a different perspective on what health is. I wish all those who are here and all those to come this way the same strength as I have seen in my son. A New Lease in Life at Five Years Old It all started July 23, 1993 my daughter was born in Jocobi Hospital in New York. I told the doctor that the baby looked blue and all he said was that she had junk in her mouth and he would clean it. They took me to my room and said they will bring me my daughter for feeds, I said thank you. For the first couple of days I said to my husband that she was breathing funny. He asked the doctor to check on the baby and she said that all big babies breath like her, by the way she was 8 lbs. 2 oz. and 19 inches. At 5 days old they noticed an irregular heart beat, and that they were going to send her to another hospital for more information. I went with her to the other hospital and there I meet a wonderful cardiologist named Dr. Carl Steeg. He saw her when she got there and said that she was a miracle. He explained to me and her father that her problems were big but that he is going to take it one day at a time with her. To make a very long story short, she under went 1 minor and 2 major surgeries, and her cardiologist decided not to do any more, because he felt why fix what's already broken. So I asked what should we do and he sent us here (CHILDRENS HOSPITAL BOSTON) and here they did test after test and came to the conclusion that she needs a new heart (TRANSPLANT). So on NEW YEARS EVE Dec.31,1998 at exactly 12:00a.m. my daughter's new heart was working A.OK... with the blessing of the LORD! That saying you don't know what you have till you lose it, well from one mother to another, treasure what you have because if you lose it hurts. I Thank God every day for giving my little angel a new lease on life, for we will share every breath and every step together and with our family... So for that person who is about to go through something like this, have a lot of faith and GOD WILL NEVER FAIL YOU! by the mother of Diana
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© 2007, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated February 1, 2007 |
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