Next on my list to buy the PICU are more kids single cotton sheets and of the ‘non pink’ variety. Sounds like a daft thing to be considering at this point of intensive care but even if I can’t get them in time for Gwendolyn it’d be nice for the other kids.
PICU parents feel helpless. As parents we’re used to chasing around after our child, feeding them up, wiping the snot from their noses, entertaining them with activities and tasks. In PICU we’re limited to reading out loud to them, holding hands and helping the nurses giving them a wash down while they hold all the breathing tubes and you have to avoid the lines tapped into every leg, arm and over the body.
Yesterday Gwendolyn’s sedations were weaned as they needed her to cough herself. Whilst lovely to see her eyes open at times it led to the most heart-breaking moment. Crying noiselessly is just heart-breaking as you see tears rolling down their face. Trying to hold her hand and stroke her hair to soothe her when i know that all she wants is to be held and I can’t because of all the tubes and wires helping her to breathe. I am so happy that she’s improved enough to be weaned off the sedation for a few hours but the soundless crying is definitely one of the hardest things I’ve had to watch whilst here. Buying new sheets seems daft – but its something to do, to feel as if I can make her more comfortable, especially if I find some non pink ones!
All day – scrap that – all week I’ve been receiving emails about Black Friday coming and all the money saving deals available. Today during my fresh air break into town, shoppers were everywhere and even darting out in front of ambulances in-case their shopping was delayed a fraction of a minute. It made me think – are we really that insensitive to life itself now and so possession focussed that we have almost come to the point of putting a price on life?
This morning I walked onto the ward to see a tank of nitric oxide next to Gwendolyn. This is not good. For fellow preemie/PICU parents they’ll know that sense of dread when they see it. For everyone else it basically means 100% of oxygen down a tube isn’t enough to keep her going now. She’s that poorly. It means things are bad. A quick google online tells me that it roughly costs around £26 per hour to use this on her. The 10ml specialist drug they used on her lungs this morning to try and clear them costs around £20. Did the doctors or nurse quibble over using it on her? Did they count their budgets first? No. They fix lives and they’re desperately trying to fix and save my baby girls life.
The black Friday emails – they make me sad because the only thing I see that is black about tomorrow, ( if last year is anything to go by) is that people will trample on each other to save £25 on a TV (also the running cost of my room in the hospital so I can be a short run away from her). It was named black because of the violence of shoppers, yet up and down the country tomorrow it will be black for a different reason for little families sat in NICU’s & PICU’s up and down the country. Black because they would give every penny and possession they had to help their doctor and nurse make their child better.
I’ll be hoping that it’s not so black for all our parents tomorrow. Fingers and toes crossed.
Today was the first day I actually cried and it was because she opened her eyes. Day 10 in hospital and they’ve reduced her sedation so that she can try & cough a bit to help loosen the secretions in her chest in a way physio just can’t. I know she’s sedated and on medications that most drug addicts would love to get their hands on but when she looked at me she was soundlessly crying and trying to move. Not easy to do when you’re on a ventilator.
I know we’ve been here before, ventilator keeping her breathing but this time it’s harder. This time she’s not a little baby that doesn’t know any better and simply accepts a breathing tube. This time she’s a little person who doesn’t understand why she’s all foggy, or why a machine is helping her to breathe and most of all – she doesn’t understand why when she reaches out her mummy can’t cwtch her.
Last Monday, almost 2 years to the day since Gwendolyn was discharged from the Neonatal unit – she was being rushed to A&E with difficulties with her breathing. Rapidly admitted to one of the wards and placed on oxygen, we thought that they’d caught the chest infection in time preventing the pneumonia. Then not long after, the two words dreaded by preemie parents – RSV positive. Another 48 hours would see us in the PICU as her oxygen need increased & increased. Yesterday I allowed myself to hope we’d started to turn a corner as she seemed more stable and her secondary chest infection had cleared but now a partially collapsed lung is causing problems with her oxygenation as well and as I write this they’re trying something else to help the lung.
I never thought I’d say it but thankfully they’re sedating her more so that she stays asleep for this – as I can’t face her looking at me like that again with her eyes so hazy but sad. In the meantime.. back to sitting by her bed. I’ve even tried to learn to knit this time to pass the time!