"Procedures not being followed"

Our child had been in hospital for just under three months. They spent just over three weeks at another hospital and the rest of the time at Perth Children’s Hospital.

I was slightly dismayed when I heard we were being transferred to Perth Children’s Hospital as my child's gastrointestinal problems were too complex for the first hospital.

We had quite a few problems in our time but the ones below are the ones that I felt utterly disappointed at. 

1. I believe my child also had a change in their breathing whilst admitted. They were suddenly making a high pitched wheeze on inhalation which is totally out of character for them since having their supraglottoplasty, we’ve had no breathing concerns.

I believe a nurse noted the change and called their treating team who said to monitor when it was happening and for how long. I felt the nurse wasn’t satisfied with that response, so they called the STARS RMO, who came and assessed my child and advised the nurse to keep the stats probe on them and to monitor.

This continued to happen for 2 days with, I believe, no further investigation or discussion from their treating team despite me bringing up my concerns. 

We were visiting a friend on level 2b, their baby has a tracheostomy so they had an experienced tracheostomy nurse in the room. I believe the nurse heard my child doing their new high pitched wheezing and said straight away, that they weren’t happy with the breathing and was worried they were obstructing.

They said they were calling the shift supervisor on our ward and I should head back up. I did this only to sit in our room and nothing to be done again.

The shift supervisor didn’t come and see us. I believe they spoke to our nurse who came in and said there was nothing they could do as my child was now breathing fine and claimed they couldn’t call the doctors and say my child was struggling to breathe, but now they are okay.

I was forced to call an outside private ENT clinic and drive my child who is an inpatient at a children’s hospital to a separate premise just to get some help with their new wheezing and problems they are having. 

2. My child was put under a general anaesthetic to have a PICC line put in. The PICC line was used to administer TPN feeding. This was fantastic and I had a different child who was able to be fed and nourished without causing distressing pain to their body. 

Only for them to remove it and put my child back on milk feeds with, I believe, no changes being made to help their pain levels. This caused my child so much pain and agony they were sedated multiple times just to get them through the pain. 

My child's PICC line dressing was to be changed every 7 days as per policy. It took until day 10 to have this done despite me asking multiple times. I was worried about the state of the site as there had been a change to the skin around (redness where the line goes in) and a brown gooey discharge. 

When I asked for this to be done as it had been 7 days I was told the following:

- they didn’t have the correct trained staff to do this so it wouldn’t be done that day

- there are sicker kids than my child in the hospital so they will have to wait 

By the time they changed it, I felt it was in such a state we had to have the central line nurses come and assess it as they believed it was infected.

3. We had to see a different speech therapist whilst our usual was away. I felt they didn’t listen to any of my concerns and also believed they went behind my back to push oral feeds into our baby.

These feeds are extremely distressing for my child. They have esophageal dysmotility, causing their esophagus to fill easily and the milk to spill into their airway. This makes them feel like they are choking and my child will then scream hysterically for hours.

My child will then vomit blood hours later.

I explained this in length to the speech therapist. Showed them videos of it happening. I felt our stand-in speech therapist didn’t give any concern and wasn’t interested in a thing I had to say or show them.

They then went straight out the room and called their treating team saying that they believe my child is totally fine to be bottle-fed. This is totally invalidating to a parent who has been struggling with their unwell baby for months. A baby in agony and petrified every time they had to bottle feed.

4. Breaks from Total parenteral nutrition (TPN). After a while of being on TPN feeding it was decided that my baby could have short breaks. Apparently it is policy to check blood sugar levels (BSL) half an hour after coming off the TPN. The first two days I asked multiple times for this to happen as my child was sweating a lot and very distressed. The case with the testing machine made it to the room but that’s it. Despite me pressing the bell multiple times and asking nurses I was just told our nurse is too busy. On the third day, we had a different nurse and after a half an hour break, our baby was showing the same symptoms. The nurse checked my child's BSL and discovered they were very low and they needed to be plugged back into their TPN feed straight away. I hate to think what their levels were the other days they didn’t get tested and what this could have done to their little body.

We had some fantastic nurses and doctors but unfortunately, I feel these occurrences really put a dampener on the experience as a whole. In my opinion, when you are in hospital, you shouldn’t have to fight until you are totally exhausted to get help for your child let alone having to drive them off the premises to get help.