A couple weeks ago was tube feeding awareness week. Obviously I didn't get my post done in time, but I still would like to share how the tube works and the impact it has had on Jaxon's life.
Below is what we call a Mic Key Button. On the face it tell the size. Jaxon's is a 12french .8cm. He will soon be getting a larger one since he has grown. This is the smallest button made. When not in use the stopper on the left goes into the hole. Just like a beach ball.
Next is a picture of the balloon. In surgery they brought up a part of Jaxon's stomach lining and tacked it to his flesh. This allows it to stay in one place so when i put the tube in it automatically goes into his stomach.
Below is a picture of how it looks when inserted into the stomach. The balloon on the bottom is empty when I insert it and then from the small white tip on the right I insert a syringe and fill the balloon with 4ml of water and this keeps the button in place. Sometimes the balloon can leak or burst. If you have another button handy just put another in, if not you have to tape this one to his stomach so the hole doesn't close up. You can also see a tube in the middle of the button. This tube is where the food goes through and comes out the hole on the bottom into the stomach.
To the right of the button is what we call the extension tube. It goes from the feeding bag into the button. It is about 12inch long. We also give medications through this extension tube with a syringe.
In this picture the extension tube and the button are hooked together. It's a bit hard to see but the lines on the extension tube and the button are lined up. You can see this a little better in the above picture.
Then you just twist it to the right just like the arrows show. Amazing how simple this seems and we had a nurse turn it the wrong way and break the inside of the button. Insurance only pays for 1 a month and you always want a back up. So needless to say I wasn't not a happy camper.
This is the feeding pump. It's fairly simple to operate. You just input the volume you would like to feed in milliliters. Then you input the rate you want the pump to run at. Usually the goal is 30 minutes. So if you need to feed 210 mils you want your rate to be 420. We set it to run over 8 hrs at night. So the rate is much slower. When the correct amount has gone through the pump it sets off an alarm telling you it's done.
What a great way to wake up at 6am......
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| The rubber thing on the right is attached to the feeding bag. It hooks around the black knob and inside the pump are sensors that knows when milk goes by keeping track of the flow in milliliters. It also knows when there is no milk and an alarm sounds saying either feeding done or no flow. |
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| With the rubber tubing hooked up. |
This is an IV pole where we hang the bag from and the pump attaches. We use a new bag everyday to ensure it doesn't grow any bacteria. The extension tube I described above gets changed every week.
This is Jaxon's main source of nutrition. He goes through 5 cases a month with 24 cans in a case. After we went off breast milk and formula this was 100% of his nutrition. He has since began eating some puree accounting for about half of his calories per meal. He requires 210 calories during his 3 meals a day and he eats about half. He also gets 100-150 calories twice a day from snacks and 250 calories at a night feeding.
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| Feeding tube on his tummy. |
Seizure update: Jaxon had another seizure a week ago on Tuesday. So we did labs and if he has another seizure we are going to up his seizure medication. It was the 1st one since surgery. It was milder than the others, no convulsions. He deviates his head to the left and attempted to puke a couple times. He also came out of it on his own for the 1st time. Usually he requires meds and lots of them and a few times an ambulance ride. Afterward he slept if off and was back to his old self. We have an MRI scheduled for April 25th to make sure surgery is working as intended so we will know more then.
