Hospital to Home

Treatment options

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.

Current treatment options include oxygen therapy, exercise, nutrition and medication. Lung transplantation may be a last resort for some.

Advocating for your child

Remember that you are the best advocate for your child. Don’t be afraid to speak up if you feel something is not right or if you have any questions. You will not offend your child’s healthcare team. You can also ask for a child or patient advocate if you need help.

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’s healthcare team so that together you can address it.

You can request family meetings to get updates or discuss your child’s 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’s 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.

Hospitals have systems in place to help patients, their families and carers escalate their concerns with staff about worrying changes in a patient’s condition (eg. Ryan’s Rule Clinical Review). These systems vary across states and territories, but they are there to encourage patients, their families and carers to ‘put their hand in the air’ to signal they need help.

Tips for managing a hospital stay

Some tips from parents for managing a hospital stay:

• Ask questions
  Do 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’t understand something, or ask the healthcare team for some extra time to process information and collect your thoughts.
• Ask about a hospital tour
  Understanding 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.
• Talk to the hospital’s social worker or clinical psychologist about your feelings
  They may have information and resources that can help you manage the emotions that come with being in the hospital.
• Get sleep
  Being 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.
• It’s okay to cry
  Sometimes parents and carers feel embarrassed about crying in front of medical professionals or others. It’s okay to cry and release some emotions. It’s 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.
• Stay warm
  It’s 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.
• Remember: You are strong and not alone
  It will not seem like it at times, but you will make it through this. Don’t be afraid to ask for counselling or help. Hospital life is very challenging, but you won’t be there forever.

Transitioning from Hospital to Home

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’s 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:

• Educate yourself on your child’s condition
  Before being discharged from the hospital, ask as many questions as necessary to get a solid understanding of your child’s condition, medications and treatment plan, including any surgeries or procedures your child has had. Research the condition using only reliable resources.
• Know emergency techniques
  Plan 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’s doctor.
• Have a written care plan in place
  Ask 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.
• Understand your equipment
  You 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.
• Learn about medications
  If 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.
• Know who your contact person is
  There 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.
• Understand your monitoring responsibilities
  You 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.
• Trust your instincts
  If you feel like there is something wrong with your child, don’t 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’t 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.
• Write it down
  Keeping 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’d like to ask your doctors and information that you learn at your appointments.
• Get organised
  Keep all of the information you’ve received about your child’s 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 My Health Record to keep track of your child’s health information online; request that your child’s treating healthcare team upload all information.
• Prepare for your child’s appointments
  If you didn’t do it while your child was in the hospital, make any necessary appointments with your child’s 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 My Health Record, 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’s care. Write down any questions that you have before your appointments and don’t be afraid to ask for clarification.

Looking after your child at home

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’s treatment. You have a key role in keeping your child well and recognising worsening symptoms.