Monday, October 12, 2009

The G Button

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 has come time for us to take that step...and we 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.


Anonymous said...

Thanks for taking the time to update - Still praying for you all - be strong. Hope you feel better.
Donna (from Yahoo Keto Group)

Kristine said...

Thanks for the update! I, too, am scared of a Gtube, but there are SO many other moms that say they wished they got it sooner. I hope it will help to get more consistent calories into her....I worry all the time about Katie's intake.

I hear the first 2 days after getting the Gtube can be a bit rough, but it doesn't last long and then it's pretty smooth sailing.

Debbie said...

I am sure it is a "double edge sword" ....all you have done to avoid this, and at the same time accepting what may be best for your entire family.

I am completely medically challenged. Never in a million years would I believe I would be doing all the things I do today for the well being of my medically fragile child...that includes G-tube feeds... I have even had to replace it once! After 2 years, I don't think about it much.
I think the mind processing it is worse than actually doing it, but eventually you will get used to the whole process.

My prayers & thoughts are with you and my mom-heart feels for all you are going through!

Reagan Leigh said...

Hang in have been through so much lately! I hear a lot about initial hesitation with g-tubes but for those who choose that route it always seems to work out for the better and take a lot of stress off the mommy (who is usually the feeder). Thinking of you and keeping Kendall in my prayers!

Heather said...

I know you have fear and uncertainty.I really,really understand that.Trust me.Try to look at it as an insurance policy.Something in place when and if you need it.Remember,as difficult as it is to see it now,it is temporary.In fact,if it were to fall out and not be replaced within 45 min,it will close.It is as simple and as complicated as that.I am not trying to make light of it.I really am not.I just want to reassure you that it will all work out.Promise.You will,at some point find it as a welcome back up.Especially with meds.Zoey WOULD NOT have done as well through chemo without it.It saved her life on many occasions.Please feel free to email me if you have any question.

Feel better and I will pray for peace and strength for you as you settle into a 'new norm".

Bronx Cataldo's said...

I know the thoughts that are going through your head, the biggest one I have failed. The answer is NO , YOU HAVE NOT. I had often sat and forced fed Finny with a syringe and the frustration and fear over not eating, not getting enough fluids in to him. At not 1 but 4 doctors suggestion I finally gave in and he got his second belly button. You know it was the biggest blessing and probably the best thing I ever did for him and everyone involved with him. His aspiration and asthma is now a thing of the past. Getting his meds in to him is a breeze and I know he got the full dose. I think my biggest fear was the feeding pump can you believe that? I was more afraid of the pump I laugh now when I think about it.
Wishing Kendall speedy recovery and that she will be home soon.

Cjengo said...

Mike uttered the words "defeat" too when we discussed a g tube. He felt like his only job of taking care of Jude, was not being done correctly. I explained to him that is not the case, and you cannot blame yourself for medical issues created by something out of your control. Hang in there, and I am so sorry.
Oh and I knew you didn't get the bumper sticker, but I remembered you talking about it :).
I hope you feel better soon. Try some Emergen-C, Walgreens carries it.

Anonymous said...

The g-tube is not necessarily forever.

Praying for Kendall and you.