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Procedures
One of our patients, a ten-year-old girl, just came up today to visit before and after her biopsy. She actually just had her transplant a couple weeks ago, so she’s only had two or three of them so far. She was so afraid of the biopsy initially. But she was much calmer about it today, and didn’t need any IV sedation or anything- she was a very brave girl. She was very proud of that- she came up to the floor just to tell us, “I had my biopsy today, I didn’t have any medicine, and I was awake the whole time. I didn’t have any problems.” But she was really wary initially, and when she had her first biopsy she was almost in tears. We reassured her and told her what it was going to be like. We told her that she would be asleep for it the first couple of times, that it would take about ten minutes, and that she would recover down in the cath lab and then come back up to the floor if she was an inpatient at the time. Usually with the transplant patients, they’ll go in through a vein in the neck, although once a year they’ll go in through the groin, just because they need to use larger catheters. When I explain the procedure to transplant kids, I tell them that they need to go in either through your neck or through your groin, and the catheter is just like a really long straw; it goes right into your heart through the different veins, and they take a little tiny sample, so small you don’t even feel it, of the cells on your heart. Then they take the sample to the lab and look at it under the microscope to see if the cells are normal or not. You wait six to eight hours and then they’ll give you the results. Jamie Smart, Cardiology Staff Nurse II
Procedures Before a Transplant Surgery We got a call telling us that there was a heart available for one of our patients on the waiting list, but initially they weren’t sure whether it was a good heart or not. A few hours later we got a call telling us that it was a good heart. Then the doctors called the family to tell them, and the family came in to the hospital. Before they went down to the operating room, the girl had to have a chest x-ray and an EKG routinely, and she had to have a lot of labs drawn. After those three things were done, they brought them down to the emergency operating room, where they waited for a little while and then met with the surgeons for an update and signed consents for the surgery. After that, the parent stayed in the waiting area while the child went into the operating room for the transplant. She went to the ICU after the surgery, where she had a breathing tube and a variety of intravenous medications. They will have lots of different things connected to them at that point, which can be intimidating for the parents at first. Jamie Smart, Cardiology Staff Nurse II
We try to educate people on a daily basis about what is going on. When we bring a kid into the treatment room to draw labs, for instance, we tell them everything that is happening. We say, “We’re going to put this on your arm, and it’s going to be tight; it makes the vein bigger, so it makes it easier for us.” We explain things to them in simple terms so that they know what to expect. It’s the fear of the unknown that scares kids the most. So we’ll tell them, “Yes, this is going to hurt, but if we do this it won’t hurt quite so much, and if you stay still it won’t hurt quite so much.” If kids know what’s going to happen, then generally they’re okay. But you’ve go to be honest with them. Maura Harlen, Cardiology Staff Nurse I
In a pre-transplant evaluation, we try to get the big picture. We not only evaluate the patient with the mindset, “Is this patient a transplant candidate?” but we also evaluate to see if the patient is a candidate for another type of therapy. They might be a candidate for another medical management therapy that’s come along that other people might not be familiar with, or there might be another surgical option for them such as fixing a valve that might be leaking. Also, during this evaluation process we make sure that the patient is a good candidate for a heart transplant and that the operation will be successful, because there are certain things such as high pulmonary pressures that would be contraindications for a heart transplant. And we do blood work, because if someone is HIV positive or has any kind of hepatitis that would probably prevent them from being a good transplant candidate. We also do stress tests to see how well they can exercise, we do echocardiograms and we do a variety of different kinds of blood work. And we have them meet with a psychiatrist if that is age-appropriate, and the families meet with a social worker. So we try to get a big picture of the person, just not their heart and their disease. John Fantegrossi, Heart Transplant Coordinator
The Cardiac Catheterization Lab I think the cath lab [cardiac catheterization lab] can be a scary place for patients. It’s a busy place, and I think in the beginning a lot of the kids can be pretty anxious about coming here. But since they come here pretty frequently I think they find that they get familiar with the faces, and the nurses who work in the cath lab are really great about trying to make the kids feel comfortable. But I think no matter what you say to kids to try to decrease their anxiety, they need to experience the procedure and go through it a couple of times before they can say, “Well, this really isn’t that bad.” In the interim we do provide them with some medication to relax them and decrease their anxiety and pain, but it always seems to be the nine to ten year old girls who come in like John Wayne and just hop up on the table without any medication and say, “Okay, do my biopsy so I can go eat my bacon!” And then they leave and all the sixteen or seventeen-year-old boys are standing there thinking, “Wow.” It’s a pretty interesting place. John Fantegrossi, Heart Transplant Coordinator
What to Expect from the Pre-Transplant Evaluation and Being Listed I think that for our program the pre-transplant evaluation process involves blood work, an ultrasound and sometimes a CAT scan, all of which are non-invasive- the kids don’t necessarily have to be put to sleep for them. Families also meet with the whole team, which is made up of a surgeon, a hepatologist, a social worker, a nutritionist, and the nurse coordinator. The entire evaluation takes many hours during the day, and it often results in a repeat visit for us to discuss what we found and whether or not the patient is appropriate for transplant. It is a pretty overwhelming day because it takes quite a while. We always recommend that parents bring support people with them, because it’s so stressful that they forget to ask things or they don’t hear things that others might. I always recommend that they bring someone with them who may have a different angle or different ears going into this. Then, once they’re listed, we discuss the entire postoperative course: what happens, how long they’re in the operating room, how long they’ll be in the hospital, how long, if they live far away, we will ask them to stay in the Boston area. Generally speaking all of these times are determined by their age at the time of transplant, because that determines what kind of risk category they’re in. Generally speaking the patients are hospitalized for two to four weeks total, which includes time in the intensive care unit immediately after surgery and then time on the solid organ transplant floor after that. Then we ask people who live out of state to stay somewhere locally for an undetermined amount of time, which can range from two weeks to two months, depending on how complicated their course is. Then they come back for weekly visits and then we transition them to every other week, then every three weeks, every month, and then ultimately they only come in once a year. Most often the patients have frequent re-hospitalizations for the first six months, so we go over that in terms of what to expect. We also like to give a lot of detail as to how many tubes they’ll have, when they’ll be able to eat, and how much pain we anticipate that they’ll be in. We also tell them that some transplants don’t work right away, and we discuss the possible risks and the potential that it won’t work and what that involves. Laura Krawczuk, Liver Transplant Coordinator
Follow-Up Visits to the Hospital The frequency of follow-up visits to the hospital varies based on how long it has been since the person had the transplant, but generally speaking the children come in either every three months, every six months or once a year. Those visits involve all of the members of their transplant team: the nutritionist, the social worker, the hepatologist and the surgeon. They get blood work at each visit, and then it’s a quick physical and we ask how they are doing and make sure they’re gaining weight and going to school. It all takes less than an hour. In addition to these visits, people who had transplants at our center have to get blood work every three months for the rest of their lives, because often the first signs of a problem come in their blood work, even though they feel well. Laura Krawczuk, Liver Transplant Coordinator
I think that one of the difficult things for parents is that kids are mechanically ventilated while they are here in the ICU post-transplant. They have a breathing tube in, so they are not able to talk. Also, we are not going to let them wake up, because it is uncomfortable to wake up and have a tube down your throat forcing air into your lungs when you are not used to anything in your mouth drawing air in. Also, and I think a breathing tube is something that parents associate from TV with being on life support. In reality, it’s not that these kids aren’t breathing because they can’t; they’re not breathing because they are on so much pain medicine at the time that they are not awake enough to breathe. I think this is hard for parents, because they want to see their child awake. But it is important for them to know that it is not that their child is in a coma or anything like that. The child is just sleeping- resting from after the surgery, and it is the pain medicine that is keeping them asleep. Thomas Miller, Cardiac ICU Staff Nurse
In the ICU, there are a lot of alarms, and a lot of numbers on different monitors. I think it is important for parents to know that no one number means anything when you look at an alarm; if you looked at one number it would tell you nothing if you couldn’t see the rest of them. As a result, we try to encourage parents here not to stare at the alarms. If they have a question about an alarm, they should feel free to ask the nurses there, because their child will always have a nurse right by their bedside. And if they feel that their question was not answered, they can always ask someone else. Thomas Miller, Cardiac ICU Staff Nurse
Modeling Conversations with a Child What I try to do when I have a family in clinic is to model some conversations with the child about what they’re doing, depending on their age group. When we’re talking with parents I try to say, “How this is happening?” and may ask them questions like: “What is school like for you? Do you talk with your friends about your illness? How many? Are you comfortable with that?” It’s harder with the younger kids, and for them some of this is worked out through play as opposed to conversation. But I always try to encourage families to be open and honest with their kids and not deceptive. There are some families that are very resistant to being up front with their kids and feel that this is protective, but I haven’t seen that ever being successful. You have to get through to kids’ anxieties, and I try to be up front with them about what’s going on. Patricia Glidden, Kidney Transplant Coordinator
Before a child starts dialysis, we have an initial family meeting. We actually bring in a doll that a woman made for us that has all of the catheters for dialysis, so we can have a visual for the young kids. We describe the different forms of dialysis, either peritoneal dialysis or hemodialysis. We’ll actually show them what one of the catheters looks like, either in their neck or when you have to create a fistula what’s involved in creating a fistula. It’s hard to tailor that to the small kid; there aren’t quite as many options. But the adolescents and young adults are really questioning about having tubes or surgeries or needles, and so we’re usually pretty clear with them about the pros and cons. For each option, we tell them the good parts about it, and we tell them that with one form of dialysis you can go swimming and with the other one you can’t. When we talk about the actual process, we describe that it’s a way of filtering and cleaning the blood when the kidneys aren’t able to filter the blood, and that the kidneys are basically like a master chemist. They don’t just make urine; they actually are involved in doing a lot of chemical processes in the body: helping to make blood cells, helping to make blood pressure normal or not normal and help to keep your salt balanced. Patricia Glidden, Kidney Transplant Coordinator
I do a psychosocial assessment for every family that is being evaluated for a transplant. It usually happens before the transplant, although sometimes if the kid comes in emergently and gets a heart quickly then it doesn’t. I think this assessment is a good addition to the medical assessment because then we can know how capable the family and patient are going to be in following the strict regimens, appointments, and everything that they need to do post transplant. We start with a form that contains very basic stuff: the makeup of the family, in terms of if the parents are together or are divorced, and whether there are other siblings. We find out their income level, so that we know about resources and insurance. Then the evaluation gets a little bit more detailed by finding out about prior history of loss and illness. How familiar they are with the hospital? Some kids will be perfectly healthy until they’re fourteen or fifteen and then become ill suddenly and need a heart transplant, whereas other kids were born with heart problems. The kids who are born with it are, unfortunately, much more knowledgeable about the hospital and medicines and that sort of thing. Then, we talk about what their support systems are, and how they’re going to get through this. We find out whether or not they even want to do the transplant. We also collect their mental health history, any history of social services involvement, domestic history and substance abuse history, if any. All of that is not a really big part of it, but it’s important for us to know about. Then, we talk about anything else that they are either scared about or don’t know about. We make sure that they can learn all of that and that we set them up with the appropriate resources. Ann Rounseville, LICSW, Heart Transplant Social Worker |
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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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