I'm spending a lot of time at the moment beating myself up for things I'm not doing, so here's a nice cheerful list of things I HAVE done today.
1. Made GP appointment for N because of chest rattle.
2. Spoken to Motability car demo person.
3. Emailed Motability car-demo different person.
5. Parcel wrapping.
6. A bit of internet marketing for courses and ducklings.
7. Set four dozen hatching eggs.
8. Thrutched with chicks that are actually hatching.
9. Fed and watered birds.
I've also dressed N one and a half times because there was a nappy leak, fed her seven baked beans and two tea-spoons of minestrone soup, changed two nappies and done two tube feeds.
The tube feeding is an absolute boon, because it means that I can be cheerful about the baked beans and the soup, instead of fretting about how she needs to eat more.
I read on the facebook blended-diet-UK group this morning that on average, a tube-fed child uses £15k worth of formula PER YEAR. I am utterly, completely confounded by this. How can it cost so much? Then I reminded myself that the feed is made by a private company, which is under contract to the NHS to provide tube-feeding services. Our feed is branded by Nutrica. Nutrica also has the contract for routine tube-feeding care. So if you need your button changed (every three months-ish) or you need help changing the end of the PEG*, they are the ones you call. They should also be your first point of contact when you have an issue.
When N had her stoma** infection in September, they were the first people I called.
You can't speak to your nurse directly. You have to go through the switchboard and they are bleeped to ring you. It took two hours for her to ring me back and then another four hours for her to get here, because the area they cover is about three counties; and she was in Gloucester.
When she arrived, the perfectly nice, perfectly competent, perfectly trained nurse turned out to not be allowed to prescribe. And because of that and because she couldn't be sure that the end of the PEG was in the right place inside N, she sent us to the hospital.
My daughter was in severe discomfort, with a stoma site so infected her stomach was inflated like a drum, for nearly eight hours, because I followed procedure and rang the private company responsible for tube-feeding in the community. Oh, and also, she had no liquids in that time because the tube was blocked with infection.
It turns out that the day-to-day care of tube-fed children in the community was outsourced from the Community Nurses by the local health-care trust. They now only get involved if there are issues.
In theory, this works. In practice, the hand-over between the two teams is inefficient. Why aren't those perfectly nice, perfectly competent, perfectly trained Nutrica-nurses being employed by my NHS Trust as part of a coherent team?
In a way, we are lucky. Because N is thought to have a severely life-limiting condition, we are under the care of a special team at the hospital and we also now have open-admission to the children's ward. So, when I have any doubts or questions, I either ring the Compass Team; or I ring up the ward and take her in. Because I am not prepared to let my child be mucked around waiting for Nutrica to get off their bloated, corporate, blood-sucking backsides and get someone here quickly, who is both competent and qualified to get her acute care if she needs it, as soon as she needs it.
I'm now quite good at judging when there's an actual problem with the feeding tube. But what about those times when I've taken her in to the ward and not needed to? When I've rung the team and used up their time that someone else with a more urgent issue could have used***? I am betting that other parents in the area are doing the same thing - bypassing the outsourced team completely, because they are no use in a crisis. And in one way or another, with children like N, our lives are always in crisis. We rock, steadily, from one crisis to the next.
So that means that the local health trust has dropped a load of staff who should be on their payroll; outsourced the 'simple' bit of the care; and because the care *isn't* actually simple, put a metric fuck-ton more pressure on the Community Nurses who are left. Not to mention a metric fuck-ton of pressure on already pressured parents who are making judgement calls about the state of their child's health every day of their lives.
I am becoming The Mother From Hell and I've really stopped beating myself up about it now; because this is our life. This is the world we live in and to get N's needs met - to get any of our needs met - I need to push and push until I've go no more push left and let go of the guilt.
So, in the spirit of not feeling guilty, things I have let B do instead include; doing the school/GP/Opthalmology Appointment run, feed rabbits and quail, get in logs, book rabbits in for slaughter, feed the cat and make various phone calls.
I've also done some staring out of the window at the wind and been grateful that I'm not having to work outside or up to my udders in water. And I've talked to a Lovely Friend (tm) about planting some seeds now we're about to turn the corner to spring.
On the whole, team-work prevails.
* Two different types of tube-feeding kit. You have one or the other.
** The actual hole through her stomach wall.
*** Like the time I used a different feed without realising and it wouldn't go down by gravity because it was a bit too thick. It went in perfectly when I syringed it.