Just two days ago I wrote about our trip to A&E and how we will be trialling Clara’s ability to absorb nutrition via oral feeding before making the decision to stop PN completely.
Well a lot can change in 48 hours.
Clara’s Hickman Line is coming out on Monday!!
That means no more PN, no more intravenous infusions at home, no more line coming out of her chest taped up during the day underneath her vest.
There were two reasons behind the decision to act now:
Clara is consistently growing and putting on weight. She weighed 6.95kg last week, and now weighs 7.22kg. She has only had one night of parental nutrition in this time period – she clearly is no longer dependent on it for growth. She is certainly absorbing nutrition from milk and homemade fruit & veg purée with no adverse effects.
The big changer in making things move forward at a million miles an hour was her blood inflammation markers. We’ve finished a five day course of intravenous antibiotics because of her fever on Monday and after three days the marker had gone up, not down. This marker suggests the body is slowly but surely getting angry with something – and with every other check coming back just fine, the problem has to be the Hickman line. Clara’s body is rejecting it. She clearly knows what’s best for herself! To prevent Clara getting poorly, it’s safest we take it out now. This time however, we won’t be putting one back in.
What does this mean for every day life?
So much!
Clara’s Hickman line prevents her from playing with water. We can’t risk the site where the line enters her chest getting wet as it’s then open to infection. We couldn’t guarantee immediate support from a Community Nurse to redo her dressing if it did accidentally get wet. They say the dressings are splash proof, but it’s better to be safe than sorry. This makes bathing Clara tricky – one of us has to securely hold her upright and use one hand to cover her dressing and keep her line end up and out of the water, whilst the other can wash her. It’s meant no water play and no swimming.
Clara has started to realise her line is there, she thinks it’s something to grab and her instinct is to pull. It’s impossible to watch her hands 24/7.
It also means I’ll probably sleep at night! As the line goes into her chest and her pump stand and fluids is above her head when she’s in bed, the line curls up out the top of her baby grow and past her neck. You wouldn’t leave a baby with a cord near them, let alone their neck, during the day… imagine you had to at night. Dean had worked out a way to hide the line without obstructing it. He’d wrap it in a large muslin and then cover the excess with a large folded breathable blanket above Clara’s head. Not ideal, but the only way.
Trying to entertain a child when they’ve got to stay in one space isn’t easy. There was one morning Clara’s fluids weren’t due to finish until 10.30am but she was awake at 6am. It meant she had to stay in a one metre vicinity of her bed and pump stand, without pulling her line. It also meant I was stuck in that spot too, with no coffee! We got by with a lot of books, toys, and Clara sat upright in her bouncer, the line tucked behind her head cushion. I am very grateful we won’t have this challenge as she gets older and mobile!
There’s so much more to say, but for now – over and out. The line is coming out!!!
Clara and the Gutcracker 