You will likely have many questions about the Berlin Heart surgery. Your care team will do their best to answer all of them before you decide to have VAD surgery.
Preparing for Surgery
What should you expect before VAD surgery? Watch the video below to understand what to expect on your Berlin Heart EXCOR® surgery day.
Throughout your journey, your care team is there to support and guide you, as well as answer any questions or concerns you have. Everyone’s journey will look a little different. Download the Berlin Heart Patient Journey map to get a feel for what lies ahead. This map will also help you understand when you should be reading and learning about different phases of the journey.
Before your surgery, doctors called anesthesiologists will also visit you. They are responsible for keeping you asleep during surgery. You will not feel any pain while you are asleep. All you will remember is traveling down to the operating room.
Download PDF
After Surgery
What should you expect after VAD surgery? Watch the video below to understand what to expect on your Berlin Heart EXCOR® surgery day.
When you wake up from surgery, you will be in the Intensive Care Unit (ICU).
Surgery will make you feel weak and sleepy. For these reasons, you will have a plastic tube in your mouth that will help you breathe. You will also have many special IVs, cables, and drains, which are needed to monitor your VAD and heart function.
Your care team will explain everything to you and your family. It’s completely normal for you to be hungry, thirsty, and uncomfortable at times. You will receive pain medicines to help you through this phase of recovery.
Recovery
Once the ICU team thinks you’re strong enough to be more awake and breathe on your own, your medications keeping you sleepy will be turned off. Your breathing tube will be removed, and you will be given oxygen using a nasal cannula or mask.
As time goes on, you’ll be able to drink clear fluids like water and apple juice. When your medications supporting your heart have been decreased, you’ll be able to eat regular food again. The ICU team may decide to give you a boost of nutrition, feeding you through a special tube in your nose called a nasogastric tube.
When your breathing tube is out and you’re fully awake, this is when rehabilitation begins. Specially trained physical and occupational therapists will assist you in getting out of bed for the first time after surgery. Your nurse and care team will support your Berlin Heart pump. This is going to be very tough at first, and you may feel discomfort. Your care team will manage your discomfort with pain and anxiety medications.
Rehabilitation is a slow and steady process, and we will never make you do more than you’re ready to. But, it’s very important that you participate in therapy because your lungs and body are at risk for getting weak if you don’t begin movement immediately. Over the course of days, you will gain strength. The IV lines and drains will be removed from your body, and you will start taking some of your medicines by mouth.
When the timing is right, you will no longer require ICU-level care. This is considered a great achievement! You may transition to a general care floor where you will continue to rehabilitate, get stronger and prepare for the next steps in your journey.
Having heart problems and needing a VAD is a life-changing experience. It is very normal to feel sad at times. A team of doctors and therapists that specialize in helping children cope with life on a VAD will visit you frequently. Even though you may not feel like sharing your feelings, we encourage you to open up.
Preparing for Surgery
What should you expect before VAD surgery? Watch the video below to understand what to expect on your Berlin Heart EXCOR® surgery day.
Throughout your journey, your care team is there to support and guide you, as well as answer any questions or concerns you have. Everyone’s journey will look a little different. Download the Berlin Heart Patient Journey map to get a feel for what lies ahead. This map will also help you understand when you should be reading and learning about different phases of the journey.
Before your surgery, doctors called anesthesiologists will also visit you. They are responsible for keeping you asleep during surgery. You will not feel any pain while you are asleep. All you will remember is traveling down to the operating room.
Download PDF
After Surgery
What should you expect after VAD surgery? Watch the video below to understand what to expect on your Berlin Heart EXCOR® surgery day.
When you wake up from surgery, you will be in the Intensive Care Unit (ICU).
Surgery will make you feel weak and sleepy. For these reasons, you will have a plastic tube in your mouth that will help you breathe. You will also have many special IVs, cables, and drains, which are needed to monitor your VAD and heart function.
Your care team will explain everything to you and your family. It’s completely normal for you to be hungry, thirsty, and uncomfortable at times. You will receive pain medicines to help you through this phase of recovery.
Recovery
Once the ICU team thinks you’re strong enough to be more awake and breathe on your own, your medications keeping you sleepy will be turned off. Your breathing tube will be removed, and you will be given oxygen using a nasal cannula or mask.
As time goes on, you’ll be able to drink clear fluids like water and apple juice. When your medications supporting your heart have been decreased, you’ll be able to eat regular food again. The ICU team may decide to give you a boost of nutrition, feeding you through a special tube in your nose called a nasogastric tube.
When your breathing tube is out and you’re fully awake, this is when rehabilitation begins. Specially trained physical and occupational therapists will assist you in getting out of bed for the first time after surgery. Your nurse and care team will support your Berlin Heart pump. This is going to be very tough at first, and you may feel discomfort. Your care team will manage your discomfort with pain and anxiety medications.
Rehabilitation is a slow and steady process, and we will never make you do more than you’re ready to. But, it’s very important that you participate in therapy because your lungs and body are at risk for getting weak if you don’t begin movement immediately. Over the course of days, you will gain strength. The IV lines and drains will be removed from your body, and you will start taking some of your medicines by mouth.
When the timing is right, you will no longer require ICU-level care. This is considered a great achievement! You may transition to a general care floor where you will continue to rehabilitate, get stronger and prepare for the next steps in your journey.
Having heart problems and needing a VAD is a life-changing experience. It is very normal to feel sad at times. A team of doctors and therapists that specialize in helping children cope with life on a VAD will visit you frequently. Even though you may not feel like sharing your feelings, we encourage you to open up.
