How did we get here?

January 8, 2009 Kyron 5 Comments

Katherine’s pancreatitis continues to have long reaching complications. Not only has her way of life had to change, not only has her look changed from the drastic weight loss she has encountered, but her look is about to take yet another turn. Her GI who I love is telling us that Katherine needs a G-Tube (which is frequently known as a feeding tube. This is happening tomorrow. While we are still waiting for some details, her dad’s flying down tonight and this thing is happening tomorrow…which is of course where the problem comes in. How come my usual solid footing is so freaking weak this time.

I guess overall I’m certain we are doing the right thing. It is just that some people I trust spoke out against it and I guess it shook my confidence.  I guess that it is to be expected. Not everyone is going to be on board with an invasive procedure – no matter what it is. I think that most parents have that problem to some degree. You want to be so certain you are doing the right thing you rehash the whole thing in your mind over and over until you eat your gut in the process. Sometimes it’s particularly hard because you are weighing (like I am) the variety of issues that your child has going on and how this one issue (in my case, Katherine losing so much weight) is impacting all these various issues.

Where I have come down is that no matter how much I value and trust the voices of dissent on this, the people who I trust most – me, her GI and cardiologist and my family -  Joan, dad, his wife Mary and my husband have all supported me in this decision. I have a further network of friends and family who have also encouraged me to just think it out logically – actually making a list of reasons why I think I should do this and why not – and it’s really helped. Sounds like something I might have done to make a decision about who to go to prom with in High School (although that wasn’t ever an issue! LOL)

Hopefully this is as temporary as we plan it to be and that it gives Katherine an additional tool to gain weight, to increase her appetite and allow her to gain her strength back and then maintain it on her own so that this will be a brief blip in Katherine’s history.

Do any of you second guess yourself on all the decisions that have to be made for your kids? How do you go about making these decisions? Do any of you have kids with a G-Tube? Any advice you’d give me on care, feeding, anything I should know? Please feel free to share! icon smile How did we get here?

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Categories : Medical, Strategies

Currently there are "5 comments" on this Article:

  1. Deana says:

    I’m sorry to hear that Katherine is still having trouble. We are still pretty new to the game of g-tube’s ourselves, having just had Max’s placed in August. It was one of the most difficult decisions to make, yet one of those ones where I have sat back and kicked myself wondering what took so long!?

    It’s never easy to have our kids go in for a procedure/surgery. I’ll be thinking of you tomorrow.

  2. Stacey says:

    I think that you as Katherine’s mother know her best–

    The kids and families I know who have had G-tubes–were small — but I will email a link of this to them.–

    connection seems to help?

    I send prayers your way!

  3. Kyron says:

    Thanks so much to you both. We are leaving in a few to go up to the hospital. Your well wishes mean so much!! Good thoughts and prayers are very much appreciated :)

  4. Randy R says:

    Kyron,

    This my first visit to this website and I read your post about your daughter’s G-tube. I have twin boys, 3 years old, that both have G-tubes since leaving the NICU. Dylan just got his out a few months ago and Ryan still has his in. After three years we have gotten use to them and have a sense of security knowing we can get water and food in them when absolutley necessary. Even now, with Dylan’s out, we are constantly worried if he is getting enough water and calories, while we know Ryan is.

    My advise is; Get a spare G-tube from Insurance and a tube of KY gel and keep in your diaper bag or purse incase her’s comes out or breaks. We clean the site every night with baby shampoo and q-tips.

    I wish I could think of more but I have to go…

    Best of luck,

    Randy

  5. Kyron says:

    Randy,

    Thanks so much – that was actually great advise since I’ve been looking for a better way of cleaning than alcohol swabs that were supplied because they sting her and she hates HATES the smell. The baby shampoo is brilliance and I just wish I had thought of it! :) I really appreciate your visit and taking the time to post that!

    ~Kyron

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