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Questions After Transplant
Questions After Lung Transplant After transplant, families ask us, “How often do I need to come back to the hospital?” “How often do I need to get blood drawn?” and “When can I get my G-tube finally taken out, now that the transplant’s over with?” Because for so long they have a G-tube to help increase their nutritional intake, and now they’re gaining weight from the steroids that we put them on and they want it taken out. And they ask, “Do I always have to get a chest x-ray, pulmonary function tests and blood work, every time I come?” And of course the answer is always yes. They also ask, “When can I drive?” That’s a big one after transplant, particularly for teenagers. And people also ask us, “When can I go back to work?” And I’m conservative, so I’m one to say, “You can’t drive until two months after transplant,” or, “You can’t get the G-tube out until we really see that you’re gaining weight.” And we tell them, “Let’s wait a little while; let’s see how you do.” I don’t like to give false hope to families by saying something like, “Oh, in two months you can get the G-tube out, definitely!” Because who knows what’s going to happen? How they’re doing is so tenuous right after transplant that anything can happen, and we don’t like to put out false hope to families. Emily Trombly, Lung Transplant Coordinator
How Long Will a Child Be in the Hospital After Transplant? When people ask how long they will be in the hospital after a transplant, I usually say that it depends on the kid, because recovery is an individual process. Some kids sail right through, and we’ve discharged people ten days post-surgery. But if small or large complications occur it prolongs their hospital stay, so it’s hard to tell how long they will be here. Their recovery could be as quick as a week, or it could be three weeks. But anticipate the worst, and then if a kid is discharged earlier, it’s a bonus. Maura Harlen, Cardiology Staff Nurse I
We explain to the kids that after transplant, they have to take reverse precautions. Normally if someone on the hospital staff walked into the room of a patient with something contagious, the staff member would be wearing a mask, gown, and gloves. But for the transplant kids, it is reversed- they wear the mask so that they don’t catch anything from us that we may not even know we have. Maura Harlen, Cardiology Staff Nurse I
Questions After a Heart Transplant After transplant, even though we do a lot of teaching about it, the biggest question is, “How often do I have to come back to the hospital?” Beyond that, I think the biggest thing that people are concerned about is when they can go back to school. Adolescents sometimes ask, “Will I ever be able kiss a boy?” or “Will I ever be able to kiss a girl?” The parents ask, “Will they be able to go to college?”, “What infections do we have to worry about? And what do we do when there is an infection?” I think that we answer all of those questions on a case-by-case basis. However, the general rule of thumb is that yes, they can go to school, they can go to college when they are old enough, and they can date. I think that’s reassuring to people. John Fantegrossi, Heart Transplant Coordinator
What Happens Right After the Transplant Operation? When parents ask us about what happens right after the transplant operation, we tell them that when the child comes out of the operating room they’ll be on a ventilator, so they won’t be able to speak, but we try to get the ventilator off as soon as possible. They often also have a tube in their nose that goes into their stomach to empty any acid or food out, so that they don’t throw up. They have a big abdominal incision, which will be covered with a dressing. They usually have at least four different types of IV’s, between two and four drains coming out of their incision site, and a catheter in their bladder to drain their urine. They will also have different boards and other things to keep their arms straight for the IVs. All of these things will be gradually removed over the next 14 days or so. Most children go home with just one tube in their belly, which has a small dressing and doesn’t drain. It’s called a biliary catheter, and we usually take it out in clinic about six weeks after surgery. Parents also want to know when their children can start to eat and drink after the transplant. It varies, but they can’t eat while they’re on the ventilator. Within two to five days after transplant they are generally able to eat. Some kids do very well when we first try foods and others don’t like it, in which case they get IV hydration until they’re a bit better. We start with a clear liquid diet, including breast milk, sugar water or juices. Then we go to formula or soups, and then to table food, or whatever is appropriate for their age. Laura Krawczuk, Liver Transplant Coordinator
Waking Up from Transplant Surgery When children first come into the cardiac ICU after a transplant, they are going to be asleep for at least a day, just like any kid who has had open-heart surgery. The child will be very comfortable, and will not be aware of anything that is going on. Because they will be on a ventilator with a lot of tubes and a lot of drains and a lot of medications, children usually are allowed to sleep for a while. We could wake them up, but they would wake up in pain. A lot of parents ask us, “Is my child going to wake up yet?” We tell parents that we could let them wake up any time we wanted to, but we want them to sleep so that they can rest and recover. Thomas Miller, Cardiac ICU Staff Nurse
Parents often ask us “How long?” How long will their child be in the hospital, or in the ICU, or on a ventilator? And I think the best advice I ever heard a physician give a parent was that when these kids are recovering, it’s not a gentle incline of recovery; it’s like rolling up and down hills. They are going to have good days where everything goes right and then they are going to have bad days where they have little setbacks. So it’s hard to say how long they will be here. It’s really up to the kids to make their own progress. We have had kids who have had heart transplants and been in the ICU for two months, and we have had kids who have had heart transplants who have been out of the ICU in two days. Thomas Miller, Cardiac ICU Staff Nurse
One of the things that I try to assure families is that the whole reason we do a transplant is to create a normal life for the child. And I say that for the first six months they are probably going to say, “Why did I do this?” I try to paint a really honest perspective that there could be a lot of ups and downs and uncertainties, and that they shouldn’t be surprised if they say, “I wish I were back on dialysis, because it was more predictable. I felt well.” But I tell them that our goal was to make them as well as possible. We want them to participate in all the activities that their friends are involved in; that’s what our hope is. Usually we’re pretty successful in doing that, so I want them to know that they have a part in this as well, in terms of managing their medications and doing the follow-up that they need to do. I also try really hard to have the kids meet other kids their age who have had similar experiences. That has always been successful. Patricia Glidden, Kidney Transplant Coordinator |
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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. July 26, 2005 |
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