Since we found out Kendall had neurological issues around 4 months, I have been absolutely obsessed with her feeding. Pictures on the very blogs I read every day of kids with tubes freaked me out. I'm squeamish when it comes to blood, the body, anything medical. So for me, getting a feeding tube was my worst case scenario.
On a normal day, I'm sure I could sit here and hash out all my emotions, but quite frankly, I'm too tired.
So, I'll make a long story short...we have decided to get a G button for Kendall. The way I see it, her Diabetes and seizures are the most important thing for us to keep an eye on for Kendall. Both of those things rely very heavily on her diet, medicine, and fluid intake. So the best way to make sure she has what she needs is to get her a feeding tube. So we are.
I've been through my crying fits and anger. But the original feeling I had of "defeat" for how hard I've worked to get her to eat thus far and now having to give in is over. I know this is going to change our lives. Kendall will still eat by mouth. I will still offer her food and fluids like I do now, but when it turns into a fight...I'll tube it. I will give her her morning and evening doses of meds, dietary supplements, etc through the tube.
This will free up so much of our day. Making more time for therapy, playtime, and bonding with Kendall. I will be able to sleep at night knowing she has ALL of what she needs. It will be a good thing. I see that now. Thanks to Holly, our Nurses both at home and the hospital, and our Dietitian through ECI, this no longer seems scary. I can do it. It will improve quality of life for Kendall...and my family. Like Kamden said..."mom, now you will be able to sit down with me and watch TV, play games, or cuddle, instead of trying to always get Kendall to eat."
So with that said...it has come time for us to take that step...and we will....in the next 3 days. Surgery isn't scheduled yet, but our upper GI is scheduled for tomorrow at 8am.
Today we had a test run (I can't remember the acronym) to find out if Kendall has reflux with her urine. She doesn't. She does have a big bladder though. The Urologist says she is extremely constipated (a common side-effect of the diet magnified by the fact she doesn't get enough fluids) Oh, and this is humorous to me too because its the same Urologist Kamden goes to that says his chronic constipation is the reason he urinates so much!?!?!?! Anyway, we don't have an answer yet. Blood is gone. She's going on her own, just not enough.
Last night her blood sugar dropped down to 28. Yes, 28. That resulted in her having her sugars checked ever hour, and then every fifteen minutes after the glucose was put in her IV. It was a very miserable night.
I'm getting sick, so Justin is staying with her tonight. I will be downing some Nyquil and making it back up to the hospital by 7:30 tomorrow for her Upper GI. I think they will have to drop an NG tube since she's not eating. (no, she didn't get one today...she ate a little bit of solid food yesterday.)
We are also going to do another swallow study since we're there. It might be interesting. The thought is there may be a reason other than teething that Kendall stopped taking the bottle. She may be aspirating...but I honestly don't think she is. It is time for another study anyway though, so it will be nice to get it all done at the hospital.
We're looking at probably another week there...please pray she doesn't get sick.
1 week ago