9/21/18 - A J?

Today went up and down like an emotional rollercoaster for us all; Me, Mom and my care team. It started out rough, with me puking and sick. Then, it got stressful when trying to make the best decisions for my care. It got emotional, when those decisions weren’t favorable, but were the best for me long term. Finally, the day wore us out and then, in a place of contentment. So, here is what is going on…

The care team changed and new plans were made. I had a “J” tube placed inside my “G” tube today. The feeds and medicines that go thru this tube will only go into my intestines and skip my tummy. The G portion is not working while the J tube is inside it. So no G feeds or anything anymore; for now. This happened unexpectedly today…the care team went to place an NJ (the J tube that goes in my nose) and it wasn’t successfully placed in my room, so they sent me to IR to have a fancy monitor help the team place it. While in IR, the team got into discussion… Why place an NJ when there is already access thru the G tube port and this would avoid me having a tube in my nose making me gaggy? So, after talking to the G Tube surgeon and discussing if this was the right move with my small size, they decided to go ahead with it. Hopefully there won’t be issues, but there could be. So, I’m at 30ml/hr into my gut and doing well. No pukes. Hopefully I will be able to grow and gain weight now. I need to get stronger and wean off medicines, so when I try G feeds again, they are successful.

I feel better now and had a nice evening. All smiles again. This does mean that I will unfortunately be in the hospital a while longer though, until I am big enough to get a GJ tube put in (a tube that does both G and J feeds). So, I wait and grow… Please continue to pray. This was a tough pill to swallow for us. Good Night. -Heath

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