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.