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Mended Little HeartGuide

About My Child’s Heart Table of Introduction Contents SECTION Things You May Be Feeling in the Hospital You’ll experience many emotions while your child is in the hospital, and those may change many times a day, depending upon how your son or daughter is doing. Here are some of the emotions you may experience: (See the Things You May Be Feeling section of the Mended Little HeartGuide for more information on things you may feel after a CHD diagnosis.) Uncertainty Parents and caregivers have to constantly adjust to news delivered by medical professionals, so your feelings may go from devastation to hope to intense gratitude (or vice versa) in a short amount of time. Your child may recover in a different pattern than expected. They may, for example, do really well for one or two days then worsen on the third day and then start doing well again.. It can seem like taking two steps forward and one step back. Some parents compare the experience of having a child in the hospital to a roller coaster ride — but without the fun. Disconnectedness If you are in the hospital for a few weeks or longer, you may feel very disconnected from events outside of the hospital. You may find it hard to believe that life is going on as usual for many people. This creates feelings of disconnection and sometimes anger. You may feel discouraged, as though you’ll never get to leave the hospital. You will. Confusion For many reasons, you may also feel confused. You may Google unfamiliar medical jargon, only to end up more perplexed by what you find. Consent forms for procedures are long and scary and may make you feel as if you are always signing something that agrees to the risk of death or severe disability in order for your child to get the care that he or she needs. When shifts change, well-meaning nurses may give information in a different way than the previous nurse, which can add to your confusion and make it hard for you to understand what is actually happening with your child. Reports may even seem to conflict with one another. Finding your way around the hospital and locating resources can also be challenging. (See Tips for Managing a Hospital Stay in this Guide.) Surprise Some parents and caregivers put themselves into automatic pilot mode during a hospital stay, not allowing themselves to feel anything during that stressful time. The problem is that these suppressed feelings catch up with them once they have returned home, which can be unexpected and alarming. Fear Bringing a child home from the hospital is a relief, but is also a frightening experience because you are no longer surrounded by doctors and nurses who can support you in caring for your child. You may feel discouraged when you continue to feel sad and angry, or just sad, instead of happy that you made it through the hospital stay. Go To 50


Mended Little HeartGuide
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