A hospital visit - a Covid19 story

On Thursday night we had an overnight stay at the Royal Children's Hospital in Melbourne. I always think this will be my opportunity to write a post but I barely have time to stop during an overnight stay. I don't tend to advertise our quick visits and usually we can get through with only family knowing we were there. Not because we don't want to share, more because we have come to learn which visits are going to turn bad and which are not. Fortunately this one was less than 24 hours.

This part of Harry's condition is so clinical for me. The only way I get through is to detach from it, if I let myself feel this part I wouldn't be able to do it. He is poked and prodded and as he gets older its so much worse as he's so much more aware. So removing myself and functioning on logic rather than heart is the easiest way to survive. So I apologise if this post feels more unconcerned. I assure you the unfeeling comes from a place of love.

Let me explain how the hospital process works in Australia.

When Harry gets ill it can escalate very quickly.

Overall unless you are paying attention, it is really hard to tell sometimes before it is too late when a PA child is sick. There are some really strong signs such as vomiting (most common), unexplained lethargy, rapid hard breathing. But sometimes these are not so obvious, and each child presents differently. We can also do a urine ketone test to confirm suspicions, but this is not always a tell on its own. Another challenge is that PA is often described as the vomit condition as they are prone to this, especially as babies. Not every vomit is a hospital visit.

For Harry, we have learned to pay attention, I'm going to quote Harry Potter here: the key is nothing but "Constant Vigilance". We watch for the obvious signs, but also for the more subtle; loss of strength & tone in his body; crankiness (more than usual); lack of appetite. If we suspect we often do a ketone test which can sometimes confirm a problem. Or if a negative result on a ketone test it lets us know we are over-reacting. For Harry a negative is good, a positive is bad. The bigger the positive the worse it is. The frustrating part of all these sick signs is that in a lot ways he is just a regular child, he gets cranky because he hasn't been outside or he had a bad sleep. He doesn't want to eat because he's distracted. Its exhausting reading into his every mood and movement.

On Thursday Harry seemed to have a shortness of breath I didn't like, and because I wasn't happy I did a ketone test which came back positive. So I made the call to ring his metabolic team at the hospital, who after a discussion agreed with us that we should come in, alerted the emergency department to our pending arrival.

On arrival, we were triaged and then sent to resus for blood tests.

As mentioned in other posts ammonia is the dangerous substance that circulates in the blood when a PA child is unwell. For reference, a healthy child or adult will have ammonia levels under 50. A newborn is considered normal if under 100. During Harry's initial diagnoses his levels got to over 1000. This is the level we look at in particular when we suspect Harry is sick. It is a very fickle test and can only be done at certain hospitals in the main centres, a normal pathlab is not equipped to do it. (The dream is to have something similar to a glucose device for diabetes to be able to check this at home).

There one was one visit, when he was a few months old, that from the first sign of sickness, by the time we got the test back Harry's ammonia had risen to over 300 in the space of about two hours. So waiting for 5 hours in an emergency waiting room to see a doctor is not really an option. For this reason children with severe conditions such as PA get triaged in ED and then get prioritised.

So we arrived in hospital and within an hour we had a blood test done through Harry's portacath. When we suspect Harry is sick we start on a continuous feed of his protein free formula, called Energivit. This enables the body to use the calories from this to fight the metabolic crisis or illness. Ammonia blood tests take 30-45 minutes. They can do another immediate test which is called a blood-gas, it returns some immediate levels of other things. Often this tells us straight away if something is likely to be wrong. It has taught us to trust our instincts because there are things that turn up on the blood-gas that some doctors and nurses disregard, but to us they tell a different story. On Thursday, I could tell that Harry's ammonia would be fine, maybe slightly elevated but that he was fine overall from his blood-gas results. I was proven right when his ammonia came back at 69.

Harry's team said we'd probably caught something early, so no drastic measures were needed just some IV carnitine and his continuous feed overnight. As well as overnight monitoring just in case his body decided to resist. His blood count showed that whatever he was battling didn't seem to be a flu or bug.

By the morning his ammonia had dropped to 53, and all his bloods were normal. Mum instincts for the win.

The thing that stood out for this hospital visit was the Covid-19 impact. Since March, only one parent is allowed in Emergency. All nurses had full PPE on, and we were required to wear masks ("Harry, don't lick it please"). The part I hadn't really banked on, but probably should have foreseen, was the consequences of Harry's symptoms. As he had shortness of breath, and this isn't uncommon when going into metabolic crisis, this is also a symptom of Covid. As such, he had to be tested for it. All his doctors and nurses said that the likelihood of having it was so slim as his chest sounded clear, he didn't have a fever. But nonetheless protocol had to be followed. He was tested (such a trooper he got over it so quickly) and we were put in a room where no-one except full kitted out medical staff were allowed in and out. Meaning Rick couldn't visit. He was allowed to drop off supplies to the nurses station. So the hardest part was Harry against the window, seeing Daddy out there but not understanding why he couldn't have a cuddle. They fed me and Harry and were very quick to offer anything we needed. Although, I've never had a hospital stay where I couldn't get my morning coffee from the cafe. Actually, that was the hardest part of the whole stay ;).

We were discharged the next day when the metabolic doctor witnessed Harry try and launch off my knee twice and get caught in his IV line at least three times. He was declared back to his normal chaotic self. We went home to self isolate until we were given Harry's negative result on Sunday.

We are so very lucky to have the Royal Children's Hospital in Melbourne. The staff and facilitates are world class. And we were lucky that this visit was a quick and easy one.

Sometimes Harry has these episodes that seem to be unexplained. Maybe he needed more calories that day from too much mischief, or maybe he had a bad teething day, I honestly don't know and usually I can guess. This stay was a mystery.

In Harry's first year of life (Nov-18 till Nov-19) he had a total of 50 nights in hospital over 12 stays. Since Nov-19 we've more than halved the stay lengths, 11 nights over 6 stays. What this doesn't include is a handful of emergency visits where they've sent us home because of false alarms. We are definitely locals at RCH now which is not an achievement I ever wanted to add to my CV.