I’m not advocating ignoring medical advice. We have accepted 99.9% of what we have been told. In fact we have only really stood our ground and refused something once (and we turned out to be right so it was all good anyway).
However, I am not built to blindly accept everything I’m told and disagreeing with the doctors was often the best way to get them to explain their decisions fully. Explain the why. It also meant that by making them teach me what they were doing and why they were doing it – I actually fundamentally understand more of what is wrong with Dominic. (And subsequently can ask even more questions!)
By presenting the doctors with our (very basic) logic and, more often than not, simply repeating back to them what they said earlier and pointing out the contradictions – we formed a very good working relationship them.
Here are some of our more dramatic disagreement stories:
“We are not going to feed your baby for 24 hours”
Oh hell no. Not on your life.
Clearly, they didn’t just decide this one morning – what actually happened was Dominic pulled out his TAT line. This is a nasogastric feeding tube (NG tube) that went past his stomach into his intestine after the OA / TOF surgery.
Nurses can put in NG tubes because babies pull them out all the time. But because the point of a TAT line is to go past the area that was sewn together in the surgery to let it heal – only surgeons should replace them before a ‘contrast study’ is done to see if the hole has healed.
So… it’s easy to guess what happened. There were no available surgeons and the contrast study couldn’t be done for over 24 hours. They didn’t want to bottle feed him because if there was a hole it might leak, and the doctors were nervous about putting in an NG tube in case they damaged the repair.
In general, the repair takes 10 days to heal. Because of Dominic’s ventilation issues he’d had it in for 21…
After 10 hours, Dominic was distressed. After 14 hours I was in tears telling the doctors that if I didn’t feed my baby for 24 hours it would be classed as child abuse and neglect.
Finally the night shift doctor came on and (like us) didn’t understand what all the drama was about and fitted a new tube – and Dominic was fed.
I have to be honest, since then, the idea of Dominic being hungry like that ever again makes me want to cry. It was awful. He was in such a state.
Us: ‘we’ve taken him off that formula because it’s causing him huge gastric discomfort. He is constantly screaming in pain’
Doctor: ‘put him back on it, we don’t have enough evidence to say that is the cause’
2 days later… open access admission to hospital…
Us: ‘we’ve taken him off it again, look at the state of him. We’re not putting him through that much pain.’
Doctor: ‘hmm… I think we need to consult the dietician’
This was a false start on a new formula supplement especially made for kidney patients. It is awesome for them, as long as you’re not allergic to cows milk.
Unfortunately for Dominic, turns out he has a likely allergy to cows milk. He was screaming in pain from gastric wind and explosive poo. To us as parents – it was obviously the change in formula. He was fine, we changed the supplement, he was screaming in pain constantly… However, we did give the bossy doctor the benefit of the doubt and put him back on it to test-the-theory. It took only 24 hours for us to turn up to the hospital with an inconsolable Dominic in need of pain relief.
At that point, they did concede to let us just put him back on expressed breast milk to settle him down before we attempted any further supplements. The dietician did try to ring us to get us to put him back on it – but I said no. Not unless they were willing to admit us to hospital.
A couple of weeks later at GOSH we found out about the potential milk allergy.
Sometimes you do just have to trust your instincts as parents. That formula was wrong.
Trying to give a baby 6 different syringes of medicine, 4 times a day
One syringe of calpol every so often is bad enough, but trying to get 6-12 week old baby who struggles to co-ordinate swallowing anyway (because of the TOF surgeries) to take medicine like this is horrendous. It either ends up:
a) with him choking on it, because he breathed it in instead of swallowing – resulting in being patted on the back while he coughs, splutters and gasps to catch his breath and scream
b) Spat out or dribbled down his face. (Dominic actually got so fly with this he was cheeking it then spitting it out 30 seconds later)
c) vomited back up
We discovered that putting them all in a bottle in 30mls of sterile water or diorlyte meant none of this happened and he just drank it all up like milk. REVOLUTION!!
The doctors however, do not agree with this. They would prefer we traumatise Dominic with the syringes but haven’t come up with a good explanation for why we should. Also, this way Dominic takes all the medicine and has been getting better faster as a result…
We are going to continue with this until it doesn’t work or we get an explanation as to why it’s a no.