As told by Josh’s mum, Natalie.
It’s 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.
My son Josh has a Primary Immune Deficiency (PID) – X-Linked Agammaglobulinemia (XLA) and as a result of the late diagnosis of XLA he suffered severe lung damage from multiple infections, resulting in his chILD diagnosis of Obliterative Bronchiolitis (OB).
Josh’s hospital experience started with a trip to the emergency department when he was fifteen months old. The journey has been varied, exhausting, evolving, complex and educational. Now four years on, our journey continues to evolve and is an enduring learning experience.
I will break down our experience into three phases.
Phase one: Acute
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’s 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’s health improve and he was getting progressively worse.
After being admitted it took two days for him to be taken to the Intensive Care Unit(ICU), where he stayed for about a week. This time was a blur, but I learnt a lot about the different ways oxygen can be administered, nasogastric (NG) tubes for feeding, pulse oximeters to measure oxygen saturation in the blood, central venous catheters, IV antibiotics and the real meaning of sleep deprivation. After his ICU stay we were sent back to the ward. Within a few days his oxygen levels stabilised and once his oxygen levels remained above 92 for two hours we were allowed to be discharged. Needless to say I was elated, thinking this horrible journey was over and we could get on with our lives.
Our next admission was about five days later for a very similar set of circumstances, he was admitted, given IV antibiotics, steroids and oxygen until his levels stabilised. About a week later once his oxygen levels remained over 92 for two hours we were discharged with a mountain of antibiotics and asthma medication.
Less than two days later we were admitted again. It was during this admission Josh was diagnosed with XLA and started on Intravenous Immunoglobulin (IVIg). I was told about the possibility of organ damage because of everything his body had been through but again when Josh’s oxygen levels were at 92 for over two hours we were discharged (this was about a week later).
Two weeks after his last admission we had returned to hospital for a check-up with his Immunology and Respiratory teams and it was decided that Josh would be readmitted because his oxygen levels were too low. During this time a CT scan was performed and Josh was given a Peripherally Inserted Central Catheter (PICC) to administer long term IV antibiotics.
A few weeks later I received a call from Josh’s respiratory specialist confirming the diagnosis of OB.
Phase two: Caretaker phase
After his initial diagnosis and time in hospital, life started to settle down. Josh was managing days at childcare and I was getting back to full time work. Josh continues to be an outpatient at his hospital and we are seen on a three monthly basis by Respiratory and Immunology. This is generally the regular pattern and his treatment has allowed him to remain relatively stable and out of hospital (for the most part). Josh’s medication and physiotherapy requirements are constantly evolving. A treatment protocol for someone like Josh does not exist and as his specialists learn more and discover new and better ways of treating his OB, it will continue to change.
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.
Phase three: Readmissions and relapse
Josh has had two admissions to hospital since his diagnosis. Both resulting from a follow up as an outpatient. Once in 2017 and again over the Christmas and New Year period 2018/2019. It was decided that the oral/inhaled antibiotics Josh was taking were not enough to shift his lung infection so Josh required a PICC for some longer term IV antibiotics. This is generally known around the hospital as a ‘Top Up’. To receive a PICC you have to have a general anaesthetic and so Josh was admitted both times.
We are lucky enough to have a Hospital in the Home (HITH) program with our hospital. This way Josh was able to spend most of his time with the PICC at home, nurses would visit once or twice a day (depending on antibiotic requirements) and administer his IV antibiotics. Although during his latest admission the IV antibiotics he was on were not working. As a result, his HITH was cancelled and Josh was readmitted to hospital on stronger antibiotics as medical professionals needed to monitor the levels in his blood and his liver health. I was also given some extra training in physio for him during this time.
Every hospital stay is different, don’t be afraid to ask questions, clarify and re-clarify, advocate if necessary. Find out about your hospitals ‘Calling for Help’ system and policies on seeking second opinions and asking for your own specialist. The staff are incredible and there to help.
Coping with hospital stays
The following are some things that have helped me during hospital stays:
- Look at the hospital’s website, there will be links for patients and carers, a guide to the hospital, information about parent accommodation and so much more.
- Seek out and speak to the social worker.
- Find the kids recreational space in your hospital – there are hours of fun to be had and incredible volunteers to help.
- Find out about parking discounts if you are an inpatient or a regular outpatient (it is very handy having your car on standby).
- Accommodation for parents (if available) for kids in ICU.
- Locate the nearest supermarket and chemist within walking distance to the hospital. They always come in handy for forgotten shampoo, toothpaste and Panadol etc.
- Locate the parent/carer room (if your hospital provides one) on the ward, they may have a refrigerator and microwave – 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.
- Locate water, tea and coffee making facilities on the ward.
- Locate the clothes washing facilities. You will be able to wash and dry yours and your child’s clothes.
- The nurses will show you where to get fresh linen and blankets on the ward.
- Ask about private patient incentives such as food vouchers.
- Inquire about Hospital Schools if your child is of school age so they don’t fall behind.
- Your hospital may have a book, toy, video game loan system which can be great for kids.
- Email scripts ahead to the pharmacy so you can pick them up during an outpatient appointment and you won’t have to wait. (It seems as though everything is cheaper at the hospital pharmacy, unlike the canteen).
- Organise to collect equipment or consumables on a day you are attending an outpatient appointment to avoid unnecessary trips to hospital.
- 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.