In Ethan’s case, this question is currently answered with “Nutrini Energy MF”…every day. Nothing like high calorie liquid formula down your tube!
One of the most common questions we are asked when we are out and about with Ethan, and we refuse food or drink for him, is “why can’t he eat or drink”? So Shannon suggested I write a post about how it all works.
One of the risks of the surgery to resect the tumour was damage to the nerves that control swallowing. Evidently swallowing is a very delicate process and the tumour was interfering with those nerves. We knew this pre-surgery so it was no surprise when Ethan came out of surgery and the doctors told us that he had, at least temporarily, lost the ability to swallow and he would need to have all his nutrition through a nasogastric tube.
What was surprising to us was the extent to which he was affected – he couldn’t even swallow his own saliva so it would drain onto the hospital bed or pool in his mouth. But the doctors were confident the nerves would recover and slowly they did. He started to be able to manage his own saliva better and better. During this time all his fluids, food, medications etc were given via the NG tube and he was treated as “Nil orally” – a sign was placed on his cot in the hospital because obviously this is important for everyone to know!
Once Ethan could be placed upright in a specially modified pram provided by PMH, he was able to try some food to see how he swallowed (under the supervision of PMH speech pathologists). At this stage he was still in the neuro ward with the drain in his brain and recovering from the surgery, so he couldn’t move to oncology and start chemo. Initially it was hard to convince him to put anything in his mouth (technically you are supposed to start with a lollipop or something firm in a fresh food feeder so it’s just a taste and they can’t choke). Of course, Ethan wanted none of that, he wanted real food…and I made the mistake of handing him a potato stix thinking he might give it a little suck…and he snatched it and gobbled it right up and took a few years off the life of me, the speech pathologist and the nurse supervising him! Once we recovered we did laugh about it…
For about a week or two, Ethan was going reasonably well and was having fruit purées and mashed banana, but then we moved down to oncology and he started chemo and the nausea made him vomit. All of which meant he ended up aspirating and the end result…no more food orally for Ethan.
“Aspiration events”, as we called them, became our next headache. Because Ethan’s swallow doesn’t work properly, he struggles to stop foreign objects (his vomit etc) from entering his lungs. And when he “aspirates” something into his lungs, it causes him to struggle to breathe and he needs a lot of care – oxygen, a sats monitor to check his oxygen levels, steroids to help his lungs recover, chest physio, antibiotics to protect his lungs…it’s a drama. And it means time in hospital. And if it gets really really bad, a trip to PICU (have avoided that so far!).
To try and prevent aspiration events caused by vomiting, the oncology doctors changed Ethan’s NG tube to an NJ tube (a nasojejunal tube). This tube is still in place currently. It is a tube that goes down his nose but instead of going just to his stomach, it continues on until it reaches his intestines. It means that his food goes straight to his intestines and it is much harder for him to vomit it up (he just vomits his stomach juices instead). It has been an absolute saviour.
The last aspiration event Ethan had was at Easter, right before he finished chemo. He aspirated on his own saliva and stomach juices in the car on the way to PMH (pretty unlucky and hasn’t happened since). By the time we got to PMH he wasn’t well, but we didn’t realise how bad he was until one of his doctors who knows him well checked his sats and he was down to less than 80% oxygen (normal is 100% or close). He spent nearly a week in PMH recovering, but since then, so far so good. And luckily, the Easter bunny does come to the hospital.
Once Ethan finishes his radiation therapy, he can start to try eating again. We decided, in consultation with Ethan’s speech pathologist and oncology doctors, not to try food while he was undergoing the radiation therapy because we didn’t want to risk another aspiration event that would interfere with the therapy. So, while it’s been a long wait, we are excited to start him eating again. I’ll just go easy with the potato stix!!