{"id":6867,"date":"2019-11-21T10:53:57","date_gmt":"2019-11-21T00:53:57","guid":{"rendered":"https:\/\/lungfoundation.com.au\/?page_id=6867"},"modified":"2019-12-08T19:16:39","modified_gmt":"2019-12-08T09:16:39","slug":"hospital-to-home","status":"publish","type":"page","link":"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/hospital-to-home\/","title":{"rendered":"Hospital to Home"},"content":{"rendered":"","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":6725,"parent":1669,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-6867","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Hospital to Home - Lung Foundation Australia<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/hospital-to-home\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Hospital to Home - 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Many children with chILD will require frequent and at times prolonged hospitalisation, however every child\u2019s experience will be different.","link":null},{"acf_fc_layout":"column_content","columns":[{"column_type":"image","heading_text":"","paragraph_text":"<p>For some children and young people, being in hospital means missing out on school. Education services provide continuity with the student\u2019s learning and keeps students connected to their regular school or kindergarten by bridging the gap between hospital, home and their enrolled setting.<\/p>\n","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"#f9f9f9","column_image":{"ID":6978,"id":6978,"title":"Little girl and mother playing with educational toy.","filename":"Hospital-play.jpg","filesize":398850,"url":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-play.jpg","link":"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/hospital-to-home\/little-girl-and-mother-playing-with-educational-toy\/","alt":"","author":"1","description":"","caption":"little girl and mother playing with educational toy - labyrinth. kindergarten concept, lifestyle. Early education and development. child and adult playing together.","name":"little-girl-and-mother-playing-with-educational-toy","status":"inherit","uploaded_to":6867,"date":"2019-11-29 00:25:33","modified":"2019-11-29 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services<\/h4>\n<p>Ask the hospital social worker if your hospital has these services for you and your child:<\/p>\n<ul>\n<li><strong>Hospital facilities and discounts<\/strong><br \/>\nFood discounts, snacks for parents and families, meals for breastfeeding mothers, showers, laundry facilities, parent accommodation, parking discounts, parent\/carer room, computers and WiFi for parents and families, rooms for pumping breast milk.<\/li>\n<li><strong>Support for parents<\/strong>Someone to call about any concerns, counselling services (e.g. a psychologist specialising in chronic health conditions in children), pastoral or spiritual care, volunteer\/grandparent service, where you can access trained people to look after your child for a short period so you can shower or sleep.<\/li>\n<li><strong>Support for children<\/strong><br \/>\nArt therapy, music therapy, recreational space\/playroom and toys, your hospital may have a book, toy or video game loan system, opportunities to meet other children with similar conditions, activities for siblings and sibling support programs, services to help children cope with trauma, anxiety and distress caused by illness or hospitalisation.<\/li>\n<li><strong>Other services<\/strong>Educational services and learning programs (e.g. Hospital Schools), Hospital in the Home service \u2013 a service that offers people the opportunity to continue their hospital treatment in their home, nearby supermarket and chemist.<\/li>\n<\/ul>\n","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"transparent","column_image":{"ID":6913,"id":6913,"title":"Girl coloring picture book in hospital","filename":"Hospital_learning.jpg","filesize":408523,"url":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","link":"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/hospital-to-home\/girl-coloring-picture-book-in-hospital\/","alt":"","author":"1","description":"","caption":"Little sick girl coloring picture book while sitting on hospital bed","name":"girl-coloring-picture-book-in-hospital","status":"inherit","uploaded_to":6867,"date":"2019-11-21 05:55:02","modified":"2019-11-21 05:55:02","menu_order":0,"mime_type":"image\/jpeg","type":"image","subtype":"jpeg","icon":"https:\/\/lungfoundation.com.au\/wp-includes\/images\/media\/default.png","width":1200,"height":800,"sizes":{"thumbnail":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-150x150.jpg","thumbnail-width":150,"thumbnail-height":150,"medium":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-300x200.jpg","medium-width":300,"medium-height":200,"medium_large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-768x512.jpg","medium_large-width":768,"medium_large-height":512,"large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-1024x683.jpg","large-width":1024,"large-height":683,"1536x1536":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","1536x1536-width":1200,"1536x1536-height":800,"2048x2048":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","2048x2048-width":1200,"2048x2048-height":800,"xxlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","xxlarge-width":1200,"xxlarge-height":800,"xlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","xlarge-width":1200,"xlarge-height":800,"header-navigation":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-480x800.jpg","header-navigation-width":480,"header-navigation-height":800,"link-category":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-380x256.jpg","link-category-width":380,"link-category-height":256,"card":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-450x450.jpg","card-width":450,"card-height":450,"gform-image-choice-sm":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","gform-image-choice-sm-width":300,"gform-image-choice-sm-height":200,"gform-image-choice-md":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","gform-image-choice-md-width":400,"gform-image-choice-md-height":267,"gform-image-choice-lg":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","gform-image-choice-lg-width":600,"gform-image-choice-lg-height":400}},"youtube_video_url":""}]},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>Treatment options<\/h3>\n<p>A number of treatment options may be used to treat chILD. Furthermore, treating other medical conditions that can contribute to symptoms such as sleep apnoea, gastro-oesophageal reflux, aspiration or heart conditions can reduce the severity of symptoms, particularly breathlessness when active.<\/p>\n<p>Current treatment options include oxygen therapy, exercise, nutrition and medication. Lung transplantation may be a last resort for some.<\/p>\n","link":null},{"acf_fc_layout":"column_content","columns":[{"column_type":"text","heading_text":"Hospital school","paragraph_text":"<p>For some children and young people, being in hospital means missing out on school. Education services provide continuity with the student\u2019s learning and keeps students connected to their regular school or kindergarten by bridging the gap between hospital, home and their enrolled setting.<\/p>\n","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"#f9f9f9","column_image":false,"youtube_video_url":""},{"column_type":"image","heading_text":"","paragraph_text":"","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"transparent","column_image":{"ID":6913,"id":6913,"title":"Girl coloring picture book in hospital","filename":"Hospital_learning.jpg","filesize":408523,"url":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","link":"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/hospital-to-home\/girl-coloring-picture-book-in-hospital\/","alt":"","author":"1","description":"","caption":"Little sick girl coloring picture book while sitting on hospital bed","name":"girl-coloring-picture-book-in-hospital","status":"inherit","uploaded_to":6867,"date":"2019-11-21 05:55:02","modified":"2019-11-21 05:55:02","menu_order":0,"mime_type":"image\/jpeg","type":"image","subtype":"jpeg","icon":"https:\/\/lungfoundation.com.au\/wp-includes\/images\/media\/default.png","width":1200,"height":800,"sizes":{"thumbnail":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-150x150.jpg","thumbnail-width":150,"thumbnail-height":150,"medium":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-300x200.jpg","medium-width":300,"medium-height":200,"medium_large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-768x512.jpg","medium_large-width":768,"medium_large-height":512,"large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-1024x683.jpg","large-width":1024,"large-height":683,"1536x1536":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","1536x1536-width":1200,"1536x1536-height":800,"2048x2048":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","2048x2048-width":1200,"2048x2048-height":800,"xxlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","xxlarge-width":1200,"xxlarge-height":800,"xlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","xlarge-width":1200,"xlarge-height":800,"header-navigation":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-480x800.jpg","header-navigation-width":480,"header-navigation-height":800,"link-category":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-380x256.jpg","link-category-width":380,"link-category-height":256,"card":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning-450x450.jpg","card-width":450,"card-height":450,"gform-image-choice-sm":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","gform-image-choice-sm-width":300,"gform-image-choice-sm-height":200,"gform-image-choice-md":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","gform-image-choice-md-width":400,"gform-image-choice-md-height":267,"gform-image-choice-lg":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital_learning.jpg","gform-image-choice-lg-width":600,"gform-image-choice-lg-height":400}},"youtube_video_url":""}]},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3 style=\"line-height: 115%\">Advocating for your child<\/h3>\n<p>Remember that you are the best advocate for your child. Don\u2019t be afraid to speak up if you feel something is not right or if you have any questions. You will not offend your child\u2019s healthcare team. You can also ask for a child or patient advocate if you need help.<\/p>\n<p>Parents and caregivers should trust their instincts when they feel like something is wrong and should not be afraid to speak up. Most of the time, things are under control and will go as planned, even if it may not feel that way. Each child is different and will react differently to medications and procedures. If you see something that concerns you, talk about it with a member of your child\u2019s healthcare team so that together you can address it.<\/p>\n<p>You can request family meetings to get updates or discuss your child\u2019s treatment plan. You can also ask for a Multidisciplinary Team (MDT) meeting (also known as a case conference) if you feel confused about your child\u2019s status or believe you are getting conflicting opinions and reports from the various clinical teams. An MDT meeting of the medical professionals who are treating your child means you can get information from all of them at once. This will help you get a unified opinion about how your child is doing and what the plan is for them. It might help to set a clear goal for the meeting and identify the questions that you hope can be answered.<\/p>\n<p>Hospitals have systems in place to help patients, their families and carers escalate their concerns with staff about worrying changes in a patient\u2019s condition (eg. Ryan\u2019s Rule Clinical Review). These systems vary across states and territories, but they are there to encourage patients, their families and carers to \u2018put their hand in the air\u2019 to signal they need help.<\/p>\n<h3>Tips for managing a hospital stay<\/h3>\n<p>Some tips from parents for managing a hospital stay:<\/p>\n<ul>\n<li><strong>Ask questions<\/strong><br \/>\nDo not be afraid to ask questions to make sure your child is getting the best care possible for their condition. Keep asking until you truly understand the answer. There can be a lot of time spent waiting in hospitals; use the opportunity to consider your thoughts, form questions and practice what you want to say. Keep a notebook nearby to write down questions as they come to mind. Ask for clarification if you don\u2019t understand something, or ask the healthcare team for some extra time to process information and collect your thoughts.<\/li>\n<li><strong>Ask about a hospital tour<\/strong><br \/>\nUnderstanding where everything is in the hospital can help you feel less lost and confused. There may be facilities for you to do laundry, get a snack, use the computer and even just relax.<\/li>\n<li><strong>Talk to the hospital\u2019s social worker or clinical psychologist about your feelings<\/strong><br \/>\nThey may have information and resources that can help you manage the emotions that come with being in the hospital.<\/li>\n<li><strong>Get sleep<\/strong><br \/>\nBeing in the hospital is exhausting. Find a place where you can get some sleep. Hospitals sometimes have parent sleeping rooms where you can rest. You may have to sign up for the room, so be sure to find out. Earplugs, eye masks, your favourite PJs and your own pillow can help make your stay in a bustling ward that little bit cosier.<\/li>\n<li><strong>It\u2019s okay to cry<\/strong><br \/>\nSometimes parents and carers feel embarrassed about crying in front of medical professionals or others. It\u2019s okay to cry and release some emotions. It\u2019s normal to be sad and scared, and crying is a normal response to these feelings. In fact, medical staff expect parents to feel and respond in this way. Keep tissues with you.<\/li>\n<li><strong>Stay warm<\/strong><br \/>\nIt\u2019s often cold and dry in the hospital, so bring a sweater and slippers to keep warm. You may want to bring hand lotion and lip balm as well to prevent dry skin.<\/li>\n<li><strong>Remember: You are strong and not alone<\/strong><br \/>\nIt will not seem like it at times, but you will make it through this. Don\u2019t be afraid to ask for counselling or help. Hospital life is very challenging, but you won\u2019t be there forever.<\/li>\n<\/ul>\n","link":{"title":"Contact us","url":"https:\/\/lungfoundation.com.au\/contact\/","target":""}},{"acf_fc_layout":"column_content","columns":[{"column_type":"text","heading_text":"Take a break","paragraph_text":"<p>You need to get out of the hospital room, even for five or ten minutes at a time to give yourself a little time away. Go outside if you can and just breathe. If someone comes into the room and asks what they can do, have them stay with your child so you can get out for a little while. Don\u2019t spend your break time getting things done or working \u2014 really take a break. Get a snack and just sit and enjoy it.<\/p>\n<p>If you are going to be the best possible caregiver for your child during a hospital stay, you will need to take care of yourself. Your child needs you to be able to make the best decisions about their care and it may be more difficult to do that if you are neglecting your own health and wellbeing. When you feel overwhelmed, sad or angry, find ways to take care of yourself and get a break if you need one.<\/p>\n<p>Find additional information on <a href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/support\/\"><u>taking care of yourself<\/u><\/a>.<\/p>\n","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"#158c40","column_image":false,"youtube_video_url":""},{"column_type":"image","heading_text":"","paragraph_text":"","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"transparent","column_image":{"ID":6979,"id":6979,"title":"Woman is reading a book and drinking coffee in the garden.","filename":"Hospital-tea.jpg","filesize":168419,"url":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","link":"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/hospital-to-home\/woman-is-reading-a-book-and-drinking-coffee-in-the-garden\/","alt":"rare","author":"1","description":"","caption":"Woman is reading a book and drinking coffee in the garden.","name":"woman-is-reading-a-book-and-drinking-coffee-in-the-garden","status":"inherit","uploaded_to":6867,"date":"2019-11-29 00:25:37","modified":"2021-02-11 06:12:40","menu_order":0,"mime_type":"image\/jpeg","type":"image","subtype":"jpeg","icon":"https:\/\/lungfoundation.com.au\/wp-includes\/images\/media\/default.png","width":750,"height":500,"sizes":{"thumbnail":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea-150x150.jpg","thumbnail-width":150,"thumbnail-height":150,"medium":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea-300x200.jpg","medium-width":300,"medium-height":200,"medium_large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","medium_large-width":750,"medium_large-height":500,"large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","large-width":750,"large-height":500,"1536x1536":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","1536x1536-width":750,"1536x1536-height":500,"2048x2048":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","2048x2048-width":750,"2048x2048-height":500,"xxlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","xxlarge-width":750,"xxlarge-height":500,"xlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","xlarge-width":750,"xlarge-height":500,"header-navigation":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea-480x500.jpg","header-navigation-width":480,"header-navigation-height":500,"link-category":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea-380x256.jpg","link-category-width":380,"link-category-height":256,"card":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea-450x450.jpg","card-width":450,"card-height":450,"gform-image-choice-sm":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","gform-image-choice-sm-width":300,"gform-image-choice-sm-height":200,"gform-image-choice-md":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","gform-image-choice-md-width":400,"gform-image-choice-md-height":267,"gform-image-choice-lg":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/Hospital-tea.jpg","gform-image-choice-lg-width":600,"gform-image-choice-lg-height":400}},"youtube_video_url":""}]},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>Transitioning from Hospital to Home<\/h3>\n<p>While your child is in the hospital, doctors and nurses are responsible for their care. Once you return home, you will be faced with taking over care, which can be very scary. The hospital will provide you with detailed education and training about your child\u2019s treatment to enable you to care for your child at home (e.g. administer medications). Here are some things that will help you feel comfortable in managing this transition:<\/p>\n<ul>\n<li><strong>Educate yourself on your child\u2019s condition<\/strong><br \/>\nBefore being discharged from the hospital, ask as many questions as necessary to get a solid understanding of your child\u2019s condition, medications and treatment plan, including any surgeries or procedures your child has had. Research the condition using only reliable resources.<\/li>\n<li><strong>Know emergency techniques<\/strong><br \/>\nPlan for the worst but expect the best. Upskill yourself in basic medical training and have a plan in place for exacerbations or emergencies. Start with Cardiopulmonary Resuscitation (CPR) training. If you have not been taught before discharge, ask. Also, learn when you should call Triple Zero (000) or your child\u2019s doctor.<\/li>\n<li><strong>Have a written care plan in place<\/strong><br \/>\nAsk your doctor to develop a written care plan with you for when your child becomes unwell. The plan should outline signs and symptoms of the condition worsening, what actions to take, and when to go in to hospital. This will vary across children.<\/li>\n<li><strong>Understand your equipment<\/strong><br \/>\nYou may be discharged and sent home with equipment such as an oxygen tank, mask and pulse oximetry, or you may need to access the equipment from other suppliers. Make sure you know what equipment is required, and how to access and use it. Learning to use equipment outside of the hospital setting can feel overwhelming initially. Ask for additional practice and training if you are unsure about how to use the equipment.<\/li>\n<li><strong>Learn about medications<\/strong><br \/>\nIf your child is on medication, find out what it does, how it works, what side effects may occur, the dosage and when it should be given. Plan ahead and ask for prescriptions to be arranged and possibly filled before your child is discharged. A ring bound file for storing this information can be helpful.<\/li>\n<li><strong>Know who your contact person is<\/strong><br \/>\nThere is often a contact person, such as a nurse, for the hospital unit where your child is being treated. This person can help you to coordinate anything from appointments to medication repeats. Be sure to find out who the contact person is before you leave the hospital. It is also helpful to know how to escalate your concerns or ask for additional input within a ward and across the hospital.<\/li>\n<li><strong>Understand your monitoring responsibilities<\/strong><br \/>\nYou may be asked to do monitoring at home (e.g. oxygen saturation monitoring for children who require night-time or continuous oxygen and have a pulse oximeter at home). Be sure you understand your responsibilities; know what you need to monitor and how.<\/li>\n<li><strong>Trust your instincts<\/strong><br \/>\nIf you feel like there is something wrong with your child, don\u2019t doubt yourself. It is far better to have them checked and find out that there is nothing wrong, than to have something wrong with your child that isn\u2019t addressed. As a parent, you know your child best, so trust your instincts. Never feel bad about being persistent. No one advocates for a child as well as their parent or carer.<\/li>\n<li><strong>Write it down<\/strong><br \/>\nKeeping a journal is a great way to work through the stress and emotional ups and down of having a child with chILD. It is also a great place for making notes about what questions you\u2019d like to ask your doctors and information that you learn at your appointments.<\/li>\n<li><strong>Get organised<\/strong><br \/>\nKeep all of the information you\u2019ve received about your child\u2019s diagnosis and medical care in one place. You may wish to get a binder to store and organise papers given to you by the hospital or scan and save them on your computer. You can also use <em>My Health Record<\/em> to keep track of your child\u2019s health information online; request that your child\u2019s treating healthcare team upload all information.<\/li>\n<li><strong>Prepare for your child\u2019s appointments<\/strong><br \/>\nIf you didn\u2019t do it while your child was in the hospital, make any necessary appointments with your child\u2019s treating healthcare team when you get home from hospital. Even though your child has a rare lung disease they will also need routine care and will experience normal developmental changes and challenges. Appointments with a paediatrician and a GP may be needed over time. If your child has a <em>My Health Record, <\/em>their health information will be filed online and available to other doctors. Alternatively, you may need to request that their medical records be shared with other doctors participating in your child\u2019s care. Write down any questions that you have before your appointments and don\u2019t be afraid to ask for clarification.<\/li>\n<\/ul>\n<h3>Looking after your child at home<\/h3>\n<p>The treatment of chILD is complex and usually involves a variety of approaches. Looking after your child at home is a critical part of your child\u2019s treatment. You have a key role in keeping your child well and recognising worsening <a href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/symptoms\/\"><u>symptoms<\/u><\/a>.<\/p>\n","link":null},{"acf_fc_layout":"accordion","heading":"Keeping your child well","display_settings":"none","accordion":[{"letter":"","title":"Ensuring vaccinations are up-to-date","text":"<p>Vaccination prevents infectious diseases which can have serious health consequences for children with chILD. Infections are the main complication for children with chILD. It is important to discuss a vaccination schedule for your child with your paediatric respiratory specialist, including both routine and specific vaccines. Parents can ensure vaccinations are up-to-date by implementing all recommended standard vaccinations. Annual flu (influenza) vaccination (in children over six months) is a preventative measure that can be taken by all children with chILD, along with vaccinating against pertussis (whooping cough) and medicines which help protect against Respiratory Syncytial Virus (RSV) infections up until two years.<\/p>\n"},{"letter":"","title":"Avoiding exposure to smoke","text":"<p>Exposure to second-hand tobacco smoke is harmful to all children in general but can be particularly harmful to a child with lung disease, and should be avoided. Therefore, there should be no smoking in the presence of children with chILD (it is particularly dangerous near children using oxygen due to the combustible nature of oxygen). Furthermore, there should never be smoking in places where your child spends significant amounts of time, even when the child is not there. The safest home environment for a child with a lung condition is one where no one smokes. If you smoke, try to give up.<strong>\u00a0<\/strong><a href=\"https:\/\/lungfoundation.com.au\/patients-carers\/lung-health\/quitting-smoking\/\">Find links to help quit smoking here<\/a>.<\/p>\n"},{"letter":"","title":"Avoiding infections","text":"<p>Although it is almost impossible to prevent all lung infections, it is a good idea to avoid people who are suffering from colds and flus to reduce this risk. Close family members are not expected to avoid each other, but good handwashing and general hand hygiene to reduce infection transmission, is advised.<\/p>\n"},{"letter":"","title":"Reducing exposure to triggers","text":"<p>In consultation with your healthcare team, environmental or other triggers may be identified that can be avoided.<\/p>\n"}]},{"acf_fc_layout":"featured_posts_static","heading":"","view_more_link":null,"posts":[{"ID":1845,"post_author":"3","post_date":"2018-09-20 09:59:18","post_date_gmt":"2018-09-19 23:59:18","post_content":"<!-- wp:paragraph -->\n<p>This resource introduces Childhood Interstitial Lung Disease (chILD) and discusses the following topics:<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:list -->\n<ul><li>Disease subtypes<\/li><li>Symptoms<\/li><li>Causes<\/li><li>Diagnosis<\/li><li>Experience<\/li><li>Treatment<\/li><li>Management strategies<br>For further information on chILD you can visit our <a href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/overview\/\">website<\/a> or contact our Information and Support Centre on<a href=\"Tel:1800654301\"> 1800 654 301.<\/a><\/li><\/ul>\n<!-- \/wp:list -->\n\n<!-- wp:paragraph -->\n<p><\/p>\n<!-- \/wp:paragraph -->","post_title":"Childhood Interstitial Lung Disease","post_excerpt":"The Childhood Interstitial Lung Disease (chILD) fact sheet provides an overview of the disease, symptoms, causes, diagnosis, treatment, and management.","post_status":"publish","comment_status":"open","ping_status":"closed","post_password":"","post_name":"childrens-interstitial-lung-disease-child-fact-sheet","to_ping":"","pinged":"","post_modified":"2021-03-17 10:53:58","post_modified_gmt":"2021-03-17 00:53:58","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=resource&#038;p=1845","menu_order":0,"post_type":"resource","post_mime_type":"","comment_count":"0","filter":"raw"},{"ID":6856,"post_author":"1","post_date":"2019-11-21 10:33:52","post_date_gmt":"2019-11-21 00:33:52","post_content":"<!-- wp:paragraph -->\n<p>As told by Josh\u2019s mum, Natalie.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:heading {\"level\":4} -->\n<h4>It\u2019s important to understand that every child, parent and carer will have a different experience with hospital and that every child with Childhood Interstitial Lung Disease (chILD) will have a different journey.<\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>My son Josh has a\nPrimary Immune Deficiency (PID) - X-Linked Agammaglobulinemia&nbsp;(XLA) and as a result of the late\ndiagnosis of XLA he suffered severe lung damage from multiple infections, resulting\nin his chILD diagnosis of Obliterative Bronchiolitis (OB). &nbsp;<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Josh\u2019s hospital experience\nstarted with a trip to the emergency department when he was fifteen months old.\nThe journey has been varied, exhausting, evolving, complex and educational. Now\nfour years on, our journey continues to evolve and is an enduring learning\nexperience. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>I will break down our experience into three phases.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:heading {\"level\":4} -->\n<h4>Phase one: Acute<\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>My son started to get sick when he was about eight months old. I had visited many GPs and was seeing a private paediatrician who diagnosed him with asthma. During the acute phase of my son\u2019s illness, before his diagnosis, he was hospitalised four times. The first time we presented to the emergency department because I was sick of him being sick, nothing seemed to help my son\u2019s health improve and he was getting progressively worse. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>After being admitted\nit took two days for him to be taken to the Intensive Care Unit(ICU), where he\nstayed for about a week. This time was a blur, but I learnt a lot about the\ndifferent ways oxygen can be administered, nasogastric (NG) tubes for feeding, pulse oximeters to measure oxygen saturation in the blood, central\nvenous catheters, IV antibiotics and the real meaning of sleep deprivation.\nAfter his ICU stay we were sent back to the ward. Within a few days his oxygen\nlevels stabilised and once his oxygen levels remained above 92 for two hours we\nwere allowed to be discharged. Needless to say I was elated, thinking this\nhorrible journey was over and we could get on with our lives.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Our next admission was about five\ndays later for a very similar set of circumstances, he was admitted, given IV\nantibiotics, steroids and oxygen until his levels stabilised. About a week\nlater once his oxygen levels remained over 92 for two hours we were discharged\nwith a mountain of antibiotics and asthma medication.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Less than two days later we were\nadmitted again. It was during this admission Josh was diagnosed with XLA and\nstarted on Intravenous Immunoglobulin (IVIg). I was told about the possibility\nof organ damage because of everything his body had been through but again when\nJosh\u2019s oxygen levels were at 92 for over two hours we were discharged (this was\nabout a week later). <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Two weeks after his last admission\nwe had returned to hospital for a check-up with his Immunology and Respiratory\nteams and it was decided that Josh would be readmitted because his oxygen\nlevels were too low. During this time a CT scan was performed and Josh was\ngiven a Peripherally Inserted Central Catheter (PICC) to administer long term\nIV antibiotics. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>A few weeks later I received a call from Josh\u2019s respiratory specialist confirming the diagnosis of OB.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:heading {\"level\":4} -->\n<h4>Phase two: Caretaker phase<\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>After his initial\ndiagnosis and time in hospital, life started to settle down. Josh was managing\ndays at childcare and I was getting back to full time work. Josh continues to\nbe an outpatient at his hospital and we are seen on a three monthly basis by\nRespiratory and Immunology. This is generally the regular pattern and his treatment\nhas allowed him to remain relatively stable and out of hospital (for the most\npart). Josh\u2019s medication and physiotherapy requirements are constantly\nevolving. A treatment protocol for someone like Josh does not exist and as his\nspecialists learn more and discover new and better ways of treating his OB, it\nwill continue to change.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>&nbsp;It generally works out that Josh is seen as an outpatient every six weeks by either Respiratory or Immunology and they work as a team to keep him well. Over time, I have developed a great relationship with the doctors and specialist nurses and often ask them questions. Over the past three months however we have been averaging one visit a fortnight to hospital for different diagnostic tests and appointments. This is because Josh is getting older and we are dealing with different departments within the hospital, such as pulmonary rehabilitation and physiologists to deal with medical trauma and anxiety around medical procedures. Josh has been able to do a lung function test for the first time and his specialists now want to complete an echocardiogram to monitor his heart health and we are just about to complete another sleep study to see if overnight oxygen is required. This journey will be continually changing for both of us.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:heading {\"level\":4} -->\n<h4>Phase three: Readmissions and relapse<\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>Josh has had two\nadmissions to hospital since his diagnosis. Both resulting from a follow up as\nan outpatient. Once in 2017 and again over the Christmas and New Year period 2018\/2019.\nIt was decided that the oral\/inhaled antibiotics Josh was taking were not\nenough to shift his lung infection so Josh required a PICC for some longer term\nIV antibiotics. This is generally known around the hospital as a \u2018Top Up\u2019. To\nreceive a PICC you have to have a general anaesthetic and so Josh was admitted\nboth times.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>We are lucky enough\nto have a Hospital in the Home (HITH) program with our hospital. This way Josh\nwas able to spend most of his time with the PICC at home, nurses would visit\nonce or twice a day (depending on antibiotic requirements) and administer his\nIV antibiotics. Although during his latest admission the IV antibiotics he was\non were not working. As a result, his HITH was cancelled and Josh was readmitted to hospital on stronger antibiotics as\nmedical professionals needed to monitor the levels in his blood and his liver\nhealth. I was also given some extra training in physio for him during this\ntime. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Every hospital stay is different, don\u2019t be afraid to ask questions, clarify and re-clarify, advocate if necessary. Find out about your hospitals \u2018Calling for Help\u2019 system and policies on seeking second opinions and asking for your own specialist. The staff are incredible and there to help.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:heading {\"level\":4} -->\n<h4>Coping with hospital stays<\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>The following are\nsome things that have helped me during hospital stays:<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:list -->\n<ul><li>Look at the hospital\u2019s website, there will be links for patients and carers, a guide to the hospital, information about parent accommodation and so much more.<\/li><li>Seek out and speak to the social worker.<\/li><li>Find the kids recreational space in your hospital \u2013 there are hours of fun to be had and incredible volunteers to help.<\/li><li>Find out about parking discounts if you are an inpatient or a regular outpatient (it is very handy having your car on standby).<\/li><li>Accommodation for parents (if available) for kids in ICU.<\/li><li>Locate the nearest supermarket and chemist within walking distance to the hospital. They always come in handy for forgotten shampoo, toothpaste and Panadol etc.<\/li><li>Locate the parent\/carer room (if your hospital provides one) on the ward, they may have a refrigerator and microwave \u2013 family and friends can bring you food. Alternatively, head to that supermarket close to the hospital and buy your own. Purchasing food from the hospital can get very expensive.<\/li><li>Locate water, tea and coffee making facilities on the ward. <\/li><li>Locate the clothes washing facilities. You will be able to wash and dry yours and your child\u2019s clothes.<\/li><li>The nurses will show you where to get fresh linen and blankets on the ward.<\/li><li>Ask about private patient incentives such as food vouchers.<\/li><li>Inquire about Hospital Schools if your child is of school age so they don\u2019t fall behind. <\/li><li>Your hospital may have a book, toy, video game loan system which can be great for kids.<\/li><li>Email scripts ahead to the pharmacy so you can pick them up during an outpatient appointment and you won\u2019t have to wait. (It seems as though everything is cheaper at the hospital pharmacy, unlike the canteen).<\/li><li>Organise to collect equipment or consumables on a day you are attending an outpatient appointment to avoid unnecessary trips to hospital.<\/li><li>Get out of the hospital and go for a walk, grab a coffee, sit in the park, take your child with you if possible and soak up the outside air.<\/li><\/ul>\n<!-- \/wp:list -->","post_title":"Managing the hospital stay","post_excerpt":"","post_status":"publish","comment_status":"closed","ping_status":"closed","post_password":"","post_name":"managing-the-hospital-stay","to_ping":"","pinged":"","post_modified":"2020-11-17 22:14:51","post_modified_gmt":"2020-11-17 12:14:51","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=article&#038;p=6856","menu_order":0,"post_type":"article","post_mime_type":"","comment_count":"0","filter":"raw"}]}],"subtitle":"Childhood Interstitial Lung Disease"},"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/6867","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/comments?post=6867"}],"version-history":[{"count":11,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/6867\/revisions"}],"predecessor-version":[{"id":7103,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/6867\/revisions\/7103"}],"up":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/1669"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/media\/6725"}],"wp:attachment":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/media?parent=6867"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}