Yesterday Kylee could not keep anything down. If it wasn't coming out one end it was coming out the other. They ended up having to stop feeding her and put her back on the IV. They decided today to take her down and place a NJ tube (a tube that goes down her nose into her intestine and skips the stomach into the jejunum). They had been thinking about placing a GJ tube because she already has a G tube but by doing the NJ first it is like doing a test run to see if it will work before going to the GJ tube. The difference with the GJ vs the G is that she can not get a feeding every couple of hours. She has to get one straight feed. They say they usually run between 16 and 20 hours a day. I have been trying to stay away from the GJ tube so I am happy they are going to try it out with the NJ first. I would be so upset if they would do the GJ and it didn't work. They are also going to weigh her today. I think she probably has lost a good couple of pounds (I'm totally guessing here...she is nothing but skin and bones) so it is very important to get some calories into her. With all this being said we will not be going home anytime soon.
Thank you once again to everyone for you support. Please continue to keep Kylee in your prayers.
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An Amazing Summer!
3 years ago
3 comments:
Hi Karen,
Tell Kylee that Aunt Kristi and Uncle Ken miss her and hope to see her home soon. We are here for you when ever you need us. Love ya!
I will. Get ready to snuggle in for the snow storm :)
My girlfriend's 11 year old daughter with CP, Kailey, just had an NJ tube placed this week. We are trying to boost her strength in preperation for a G tube. My prayers are Kylee and her family.
Thank you for sharing your story.
Scott
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