We are all guilty of it, everything you see on social media is the best bits of our lives. But in reality there is a lot going on behind the scenes when you have a medically complex child.
So let’s start with the NG tube… gone are the days of worrying about having bottles and sterilisers taking up space in the kitchen. Having a baby who is fed through an NG tube takes up ALOT of room and equipment, plus a lot of the stuff is single use. So our first delivery was 28 boxes, 2 weeks later another 36 boxes. Now I’m lucky I have a garage which is now home to all these boxes, I don’t know how people do it if they live in a flat. I went out and got some box units to store in my kitchen which looks so much better than having a wall of cardboard boxes, these can be filled with the contents of about 10 of the boxes so eventually I will get through it.
Now the other thing with the NG tube is that it comes out, ALOT. This requires someone who is medically trained to put it in. Monday to Friday 9-5 is great, a nurse will come out to do it however that’s rarely the case. You see Romeo’s favourite time for his tube to come out is between the hours of 11pm-5am which involves a trip to the hospital. He has had his tube since the 18th of July, finally on the 25th of October I got signed off by the hospital to pass it at home myself. The benefit, no more early trips to the hospital but on the flip side it’s not the most pleasant thing to have to do to your own baby.
On top of what feels like a weekly tube change we have the plasters, these last about 2 days. Babies cry, they get wet, they peel off so you have to restrain your baby to replaster every other day.
And now comes the pump. Romeo has 7 feeds a day which take half an hour at a time. For 3 and a half hours a day he is attached to the pump, you can’t leave him unsupervised whilst the pump is running as if he starts to vomit there is a massive risk of the milk going into his lungs. For atleast an hour after his feed I also have to keep an eye on him to make sure he doesn’t vomit as since having the NG he is a really sicky baby. On a good day we have 1 big vomit, on a regular day we have about 3. Multiple changes of clothes for me and him and also multiple bedding changes. I have to keep on top of my washing all the time as we get through a lot of clothes and bedding.
So that pretty much sums up life with an NG, it’s not an easy task but it is vital. This tube that comes out of his nose physically keeps him alive, Romeo will just refuse to take any milk orally.
Stoma bags; these last for 2 days. Every other day I have to change his stoma. This really isn’t as bad as I had first thought it would be. Luckily Romeo isn’t rolling around everywhere so changing it is easy. I have only had one leak so far which I managed to spot straight away so a quick bag change and he was all good, it even leaked in the nappy so didn’t require a change of clothes. Again having a stoma means more equipment to store and another prescription to keep on top of, thank god for for those storage units I got!
Hospital appointments, doctors appointments, visits from the community nurses, trips to the pharmacy and endless calls to all of the above plus dieticians, SALT, surgical nurses and supplies companies. Anyone who has looked at the calendar on my wall can see how full this is. Every week our nurse comes out to weigh Romeo and a couple of times a month we will have some kind of appointment be it at the hospital or doctors. This is never ending but is part of our normal now and atleast we are getting out of the house which at sometimes can feel like the most difficult task.
If I plan on leaving the house, bam he’s been sick on me and him. Change our clothes, now his next feed is due and he needs to be attached to the pump. It’s a vicious circle and sometimes we just physically can’t get out. Now the anxiety kicks in… what if he’s sick in the car, is there a safe place to pull over? What if I don’t have enough spare clothes on me for when he’s sick? What if his tube comes out? Has his pump got enough battery in it? What if his stoma starts leaking, do I have all the stuff with me? It’s crippling sometimes, I feel like I’m imprisoned in my house but then I pick myself back up again and I just get on with it, I have to. I may come out with a million things in my bag but atleast it’s all there for just in case.
Due to all of the above Romeo is eligible for DLA which is a huge help as just because you’re in hospital, your bills don’t go away, you still have to pay petrol and parking for visits back and forth to a hospital which isn’t even local to you. It can get expensive. But the dark side of DLA is the form, 60 pages of you explaining why your child isn’t “normal”, it’s depressing it really is, but truth is my child needs round the clock care and I need to do it no matter how emotionally draining that form is. I can’t even get a babysitter as I would need to train people on how to feed him, how to change and empty his bag. My life has completely changed, my career will need to be put to the side for now as Romeo needs my undivided attention and atleast this is a bit of financial security for us for the time being.
It’s not easy, every day there is a battle but it is rewarding. Every victory, even the tiniest one can make all the difference. I hope this post has given you an insight into our daily life and to all my friends and family please don’t ever feel like I’m pushing you away if I cancel plans or have gone a bit quiet, chances are I have just encountered a little hurdle whilst just trying my best to look after this beautifully complicated child 🖤