I hold the button firmly with one hand then insert the extension by making sure the line on the extension is lined up with the notch in the button.
Next I connect the 60ml syringe to the large port of the extension. The small port we use for his meds.
I start his feed by pouring in the first 60mls (2oz) into the syringe. At this point the extension is still clamped so I can get an exact measurement.
Then hold the syringe up, unclamps the extension and let gravity do it's job. When the formula gets to the bottom of the syringe, I clamp the extension and pour in the last 60mls of Liam's feed.
I let his feed run all the way then just sit there letting him vent. This allows has to escape. I also do this because sometimes Liam will burp or retch and end up vomiting if not. This way it all goes through the tube and not his mouth and possibly lungs. Liam usually only needs to be vented for 2-3min or so. The while feed process takes us about 5 minutes. Liam has been fighting it lately. He wants to eat by mouth but doesn't want anything. Luckily yesterday and today things started going better. He didn't fight the feeds today and he ate.
Good news is he's getting high cal stuff. All his favorites. Bad news is it's all empty calories. Well mostly anyway. He loves apple sauce, Doritos, French fries and random other things. He's been refusing actually meals. For lunch yesterday I did get him to eat some top roman noodles. It wasn't much but it was something. He has his moments. His GI said to give him whatever he wants to eat to get him eating regularly then we can start working on types of foods he needs to eat. OT said the same. Me? I decided nothing will ever be perfect and I need to stop trying to make everything perfect and just work on one thing at a time. Gotta keep his tube feeds going and him tolerating them. And I have to continue to offer him food in hopes he will eat them. Like with all thing partaining to Liam, some days are better than others. <3
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