My daughter, my full time job

Note: This post was written in mid-September, but I forgot to post it. We are home from the hospital and Miss Z has been discharged from Hospital in the Home, so all is well (touch wood). Although it is a bit out of date, I thought it was worthwhile to publish it since it gives a good update on a few of the challenges we’ve been facing medically.

After the week of beautifully aware and happy Miss Z, things went downhill again. She started to get sleepy. She started to have diarrhea. She started to be miserable.

And her breathing became erratic. Her neurologist became concerned during a routine appointment and we ended up in the Emergency Department. Luckily the x-rays didn’t show signs of pneumonia and the chest physio managed to shift a lot of goo off her lungs, so we were able to go home. But she still wasn’t happy and a few days later we were back – and this time they admitted us to the hospital.

It turned out that Miss Z had parainfluenza B. This strain of flu hasn’t been very common in Queensland for a few years now, so it wasn’t included in the flu vaccine this year (which Miss Z received) – and then there was an outbreak of it in Brisbane.

The flu caused breathing problems and Miss Z was on oxygen for a few days. The fact that Miss Z didn’t rip the nasal prongs out immediately was a sign of just how poorly she was feeling.

Our paediatrician was ambitious and decided that since Miss Z was already an in-patient, she would try to organise for her to have a PICC line inserted and get a 2-week course of antibiotics that Paeds and Respiratory had been discussing since her previous hospital admission. The idea is to blast Miss Z’s chest with some hard-core antibiotics in order to kill off as many of the nasties in her chest as possible. It isn’t a cure, but they hope it will get her good for awhile and stop these constant hospital admissions.

A PICC (peripherally inserted central catheter) is a type of central line that goes in through the upper arm and into a major blood vessel next to the heart. It was decided that Miss Z needed a PICC because the veins in her arms, hands and feet are too small and fragile to maintain an IV cannula for two weeks.

There were a few questions around whether she would be approved for general anaesthetic (GA) needed to insert the PICC. She helped the decision-making process by coming off oxygen the day before the procedure and maintaining good oxygen saturation on her own.  In the end, they decided to “twilight” her (a light GA) and everything went very smoothly.

The best part of the antibiotic plan is that they have organised for us to be under the care of the Hospital in the Home. So, every day we have a nurse visit to check Miss Z’s line and administer the antibiotics and a physio visit twice a day to do chest physiotherapy to try to shift some of the secretions off her lungs.

Hospital in the Home is a fantastic programme and one that is perfect for us. To say that Miss Z hates being in the hospital is an understatement. She detests it. She is miserable there. And with her dodgy chest, she is always at risk of picking up another virus or infection.

Being in the hospital doesn’t provide me with any type of break either. Either QB or I need to be with Miss Z at all times when she’s in hospital. Someone needs to be watching out for seizures and aspiration. The nurses provide medical care, but they don’t have the time and don’t know Miss Z well enough to provide for all her everyday needs. So, when Miss Z is in hospital, so am I – which means I’m unable to work (our local park has free public WiFi but the brand new state of the art hospital does not), look after Vegemite, or sleep in my own bed.

So, having medical care at home is fantastic. But it is also intense. We have three medical professionals visiting each day, in addition to all of the care that I provide for Miss Z (feeds, meds, dressing changes, etc). So, we’re essentially house-bound, apart from school drop off and pick-up. Still, I’d rather be house-bound than hospital-bound!

Happy to be home

Happy to be home


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