How Preparing To Tube Feed Saved O’s Life In A Unexpected Way

It was one of those mornings when you pop onto Facebook and on their “On This Day” feature an old post from 3 years ago popped up.

I read it and realised how much had chamged since then. I remembered that a few weeks after this post the news was completely different to how I thought it was.

Below is the original post from 20th March 2015

After a long day I am finally sitting down to update on Owens videofluoroscopy. Too be honest it wasn’t the best result. Eating yogurt type foods Owen coped well, although he sounded wet after and didn’t cough to clear the xray showed he swallowed it safely. His thickened milk however was a cause for concern as the xray showed a small amount went down the wrong way towards his lungs. The reasons behind this need further investigation and they will look closely at the video in slow motion to fully understand why. Will then recieve a detailed report. Until then the plan is to further thicken Owen’s milk and only let him have small sips at a time, all that have seen Owen eat will understand this is no easy task as he loves his bottle and hates stop gaps (he gets very upset and sometimes holds his breath) but we are very committed to gently work on this. We understand that this is not the worse result we could of had. Thanks for reading and hope you have a lovely weekend.

Today I wrote an update on Facebook about what exactly happened afterwards till now. I thought I would share it here also.

***** Felt compelled to write this post after the old post popped up on my timeline*****

On closer look the results were infact much worse than originally thought.

The hard decision we made was to go ahead with Owen having a Gastrostomy (feeding tube in his stomach) I felt like I was failing him.

The waiting list for Surgery was long. During this time we had many a scary episode. This proved the need, but didn’t make me feel less like a failure. Owen was rapidly losing weight also.

***** THE FACT IS THAT THIS SAVED HIS LIFE… in more ways than one….
During the pre admission process it was found that Owen had a potentially life threatening condition. He had Malrotation of the bowel. In the most simplest of terms it means intestines, bowels are not fixed in the right place. It is a condition he was born with. The life threatening part is if it becomes volvous (twisted bowel) if this is not treated as a surgical emergency it is life threatening. We were in shock, we felt it was a ticking time bomb and felt extremely lucky to have found it in time.
Obviuosly surgery to correct this (called a Ladds Procedure) completely overshadowed Owens Gastrostomy which was still going ahead to be done at the same time.

Surgery went well. When asked the Surgeon said the bowel had some kinks in it, it had probably twisted at some point to a slight degree, but had untwisted it self. It was a miracle.
Recovery went well, despite a few set backs due to his gastronomy at the time.

Three months after surgery Owens temporary Malcot tube was changed to a Mic-key button ( a different type of feeding tube)

Coming up to 3 years on, we have never looked back. It was the best decision we ever made. (Even without the fact it highlighted his life threatening condition)
Almost immediately we saw rapid improvements not only in weight gain, but in progress and happiness.
We find it really easy to manage all aspects of the mic-key button.

At the moment Owen is totally tube fed for all his needs. Due to reoccuring Chest Infections he can not have anything oral at all, he just can’t cope. We are finally ok with this. Owen still loves the social aspect of dinner time and joins us as a family at the table while having his feed. He gets to play toys at the table and join in with all the family madness.
Some people feel cruel eating in front of him. But he doesn’t even seem to realise he is missing out on anything, so I guess it is just that person’s problem of coping woth their own guilt more than an actual problem.

Tube feeding is now just part and parcel of our family life. Things do have to be planned around his feeds. We do have to cope with stares of strangers from time to time…. especially if my bag spills over and loads of syringes roll around me. Or if they catch me attaching his extenstion tube to his Mic-key button…but their look of horror amuses me now. I am just feeding my child.

It is funny how an old post can remind you of how things were before. Show you how far Owen has come and how far you have come as a parent.

Owen thriving today

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