[et_pb_section bb_built=”1″ admin_label=”section”][et_pb_row background_position=”top_left” background_repeat=”repeat” background_size=”initial”][et_pb_column type=”4_4″][et_pb_text admin_label=”Text – A Patient’s Perspective” background_layout=”light” text_orientation=”left” use_border_color=”off” border_color=”#ffffff” border_style=”solid” background_position=”top_left” background_repeat=”repeat” background_size=”initial”]<\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row background_position=”top_left” background_repeat=”repeat” background_size=”initial”][et_pb_column type=”4_4″][et_pb_image admin_label=”Image – Carter Family” src=”https:\/\/utahchd.org\/wp-content\/uploads\/2018\/01\/DSC_8831-Gourley-Family-shot_resized2.jpg” show_in_lightbox=”off” url_new_window=”off” use_overlay=”off” animation=”left” sticky=”off” align=”left” force_fullwidth=”off” always_center_on_mobile=”on” use_border_color=”off” border_color=”#ffffff” border_style=”solid” animation_style=”slide” animation_duration=”500ms” animation_intensity_slide=”10%” animation_direction=”left” show_bottom_space=”on” \/][et_pb_testimonial admin_label=”View of his Parents” url_new_window=”off” quote_icon=”on” use_background_color=”on” background_layout=”light” use_border_color=”off” background_position=”top_left” background_repeat=”repeat” background_size=”initial” _builder_version=”3.0.105″ quote_icon_background_color=”#f5f5f5″]<\/p>\n
So, he\u2019s OK now then?\u00a0 This is a question I received whenever I tell the story of my son\u2019s journey thus far as a \u2018heart kiddo\u2019 (child with congenital heart disease).\u00a0 This is such a relative question.\u00a0 OK meaning is he going to live?\u00a0 OK meaning is he going to be held to a normal kid\u2019s status?\u00a0 OK meaning is his tender half heart going to allow him to do the things in life that any child deserves to experience?\u00a0 Although I often cringe at the ignorance in these words, I am lying if I say I haven\u2019t wondered this myself.\u00a0 Our son is 10 now.\u00a0 His whole life we have been told that he has an unforeseen future.\u00a0 So I do ask, is<\/em> he OK\u2026 for now?<\/p>\n Most kids with heart disease will encounter a series of surgeries and lengthy hospital stays as a baby or a young child.\u00a0 Yet this doesn\u2019t mean they are exempt from any future surgeries and hospital stays.\u00a0 In fact, for most this is just the beginning of their experience of a life of medical care.<\/p>\n As brand new parents, in addition to being parents of a baby diagnosed in utero as having a serious complex heart disease, the medical jargon was very foreign to us and there were so many questions we didn\u2019t even know how to ask.\u00a0 Even though we learned quickly how to communicate with doctors and what we needed that was necessary to care for our child, we still cannot even begin to pretend that we are qualified to care for him without great help from a doctor\u2019s care.\u00a0 And not any doctor, but a qualified pediatric cardiologist.\u00a0 One that knows about our son\u2019s diagnoses and one that we feel comfortable with asking any question to.\u00a0 The dear doctors we have worked with have endless patience and will listen to even the dumbest question- because all questions are important when you are caring for a child.<\/p>\n I deeply feel we could not have done even half as an adequate job caring for our son without the great help from his pediatric cardiologist and the great team behind him.\u00a0 He has had such an unknown future from the beginning and although his condition is not new, there are always new findings through studies and new medical technology.\u00a0 All of this amazing work allows for better care and a better future for our son as well as all of the children dealing with cardiac illnesses.<\/p>\n After our son had gone through many surgeries and many, many hospitalizations, for family circumstances I needed to go back to work.\u00a0 We had received such great care from the hospital staff and I felt so much love for us at the hospital, I knew that working there with heart kids was the only place that I wanted be when I had to spend my time away from my own heart kiddo.\u00a0 I have a great love and respect for the hospital and doctors- and having had worked with them for 5 years, I realized they truly are as amazing as I had thought.\u00a0 There is SO much time, SO much devotion, SO much love for these children with special hearts.\u00a0 I have seen on a first-hand basis those parents that are willing to follow the doctor\u2019s advice and keep follow up appointments compared to those families that do not.\u00a0 Parents and cardiologists are a team.\u00a0 It is important as a parent to be trained and feel comfortable enough to be able to care for a heart child at home.\u00a0 Parents know their child and are their 24\/7 with their child.\u00a0 With the parent\u2019s experience and the doctor\u2019s knowledge and tools we can work together to give our heart children success.<\/p>\n Now that our son is 10, he is considered a survivor. \u00a0His still has an unforeseen future but it is looking brighter.\u00a0 We are so hopeful for his future and know that it is so crucial to his success in life to be able to be involved with great cardiologists that know him and know how to best help him.\u00a0 As he gets older, we will eventually need to transition to adult cardiologists.\u00a0 We know that it will come faster than we expect it to.\u00a0 Especially looking back at our son\u2019s past 10 years, amazed that we are where we are and he is doing so well.\u00a0\u00a0 It seems scary to think we will need to leave his pediatric care behind when we are so comfortable with the way they do things.\u00a0 However, we know that he will not be able to get the best care unless we can keep moving with great cardiologists fit for him at each unique time in his life.<\/p>\n As a parent, our number one goal is to protect our children.\u00a0 Looking back 10 years ago I see a very innocent and naive set of parents leaning heavily on their doctors to not only protect their child but to save his life.\u00a0 We have continued to lean on them as our knowledge has increased and our son has grown.\u00a0 I can honestly say that the doctors involved in our son\u2019s care not only saved his life but gave us hope.<\/p>\n [\/et_pb_testimonial][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" A Patient’s Perspective Carter’s Story – from the view of his parents So, he\u2019s OK now then?\u00a0 This is a question I received whenever I tell the story of my son\u2019s journey thus far as a \u2018heart kiddo\u2019 (child with congenital heart disease).\u00a0 This is such a relative question.\u00a0 OK meaning is he going to 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