Thursday, September 25, 2008

Totally tubular

About a month ago (wow, a month? It doesn't feel like a month), I mentioned that the feeding tube was firmly on the table again. Since then, her eating habits have gone from Barely Enough to Most Definitely Not Enough. She has been sick almost without a break since school began and it makes her Most Definitely Not Enough status morph into Should We Just Pack Our Hospital Bag Now? status. I've been experiencing varying levels of anxiety about her intake and general health for a couple months now and although there are times when the anxiety almost dissipates, another illness or other obstacle is waiting in the wings and takes center stage before I ever get to experience that great big sigh of relief. During our last pediatrician's visit while we were going over a list of various KayTar-related items, she said, "Do you want the surgeon's number?" I eloquently stuttered something to the effect of "Yeah. Okay. Sure." and called as soon as I got home, lest I lose my nerve. To my surprise, because this NEVER happens, the scheduler said, "He can see you next week." So I once again eloquently said something like, "Yeah. Okay. Sure. That will be fine." and shakily wrote it in my calendar before I lost my nerve.

The appointment was last Thursday and it went well enough. I think I expected some sort of conversation about whether this was really the right thing for her (which I was internally agonizing over), but there wasn't and that in itself kind of made me feel better. Looking at it as something to be done, rather than an agonizing decision to be made was a relief. He was kind and honest, which I find to be admirable qualities in most people, especially people who will be cutting my child open. He was honest about the procedures and risks, which I was already familiar with from my own reading and surgical video watching, and he didn't make it seem like a huge deal, which was also a bit of a relief. Next week she has a tonsillectomy consult with her ENT and then their schedulers will have a chat and get a date on the calendar for both surgeries during her winter break. We're doing a two for one sort of deal, trading in the tonsils for a tube in hopes of cutting down on infections and improving her intake all at once. It is what every three year old wants for Christmas, I'm sure!

Internally, I'm still torturing myself a bit with the decision. Logically, I see it as the best thing for her or else we wouldn't be pursuing it. Josh and I both agree on it and he isn't really a medical intervention kind of guy, so that in itself is reassuring for me. Emotionally, though, I still have doubts that resurface periodically. This evacuation has been really good for her, which just encourages the little doubts to speak up a little more. She's been drinking 2-3 Pediasures per day again. She is finally healthy (KNOCK, KNOCK, KNOCK on wood). She has been snacking more often (on chips and bacon mostly, sigh). Logically, I know this is because we have been effectively under house arrest and there has been nothing to distract her from the work of drinking and eating and she hasn't been exposed to any germs outside of the home either, and we can't live our lives like that indefinitely. We can't keep her home from school or therapy or camp or fun or LIFE just so she has time to drink her bottle or avoid illness. It isn't a worthwhile trade for her. She loves school and therapy and all of the fun stuff her days are typically full of. To achieve this brief period of eating and drinking like she was 6 months ago, we've basically cut everything else out of her days. She shouldn't have to devote her 12 waking hours each day to receiving minimally adequate nutrition. We shouldn't have to pass on trips to the museum or the park or the zoo for fear of what little pathogens she will bring home as souvenirs and what it will do to her intake. But we do. We think about these things now, daily. They factor into the decisions we make for her every single day. And these big surgical decisions we've made recently, although they feel enormous and frightening at times, can change that. These surgeries will help her be healthier, they will help her get adequate nutrition without it being a chore for her. She can live her life fully, and whether or not that includes 3 bottles or not, we can make up the difference for her. When she does get sick and her oral defensiveness kicks into hyperdrive or she feels too poorly to drink, we can make up the difference. The g-button won't change her bizarre relationship with food and drink, but it will give us the ability to carry her through it when she can't or won't do it herself. I believe--we believe--that ultimately it is the right decision for her, but sometimes I really have to work to remind myself of that. In roughly three months, my little girl will have a wee plastic button on her belly and we fervently hope her quality of life will have improved exponentially for it.

39 comments:

Amy Y said...

Oh, Mama, I don't envy you having to make this decision... I am glad you and Josh are on the same page and I hope it's the solution you need to alleviate some of the daily struggles your family faces!!

mommamia said...

I know from experience this is not an easy decesion to make. I do believe it will help to keep her live as normal as possible though. You will be able to help control her intake and get medicine in to her quickly.

I'm sorry these are decesions you have to make though.

slouching mom said...

as always, ((you))

Anonymous said...

I don't have personal experience but a friend's son showed improvements in every area after his g-tube. It's been really good for him and their family. Hope this is helpful. - Victoria

nylonthread said...

I agree (and hope) that the tube will make getting nutrients into Kaytar much less of a struggle! From reading your entries, she's not a fan of food; it might be easier on her too.

FWIW, my grandfather was on a feeding tube for several years. He was not an adventurous eater and told me that the only food he missed was hamburgers. The tube allowed him some independence as he didn't cook and could feed himself (usually needed a little help with opening the cans, though).

Janet said...

You have had to make more tough decisions in the last three years than many parents make in their entire lives. You continue to do it with grace and eloquence.

I admire you like nobody's business, can you tell? ;)

Hetha said...

I admire you greatly too. You're my inspiration.

amanda said...

I know this decision was agonizing and hope it helps ease your mind, somewhat.

She is such a sweet little one sitting there with her unicorn.

Anonymous said...

I just saw your blog, I have a student who just got a feeding tube in May, he is doing great with it. He is now at the right weight and finnally looking like a boy his age. It has helped with in days. Hope this help.

motherbumper said...

That is not a pro and con list I would want to make and it pains me that you have to. But that said, I'm glad you weigh these decisions with so much research and thought - you are phenomenal parents.

BTW - I agree, that is the crappiest Christmas list I've heard. Please promise to put something pink, princessy, and fun on that list.

Christine said...

it WILL be ok. you are doing what is best, but i know how doubts can creep in.

xoxo

motherbumper said...

Oh and FWIW, every kid I know that had the ear tubes saw major improvement in fighting/avoiding infections. xo ~ the bumps

Becca said...

Good luck. I know this was a hard decision, but it really sounds like the right one.

Ben and Bennie said...

my little girl will have a wee plastic button on her belly and we fervently hope her quality of life will have improved exponentially for it.

I promise it will.

It still amazes me how different our children are and yet how similar our struggles.

flutter said...

sweet little fluffy princess girl!

runafteryou said...

Stop torturing yourself, period. It won't help Kaytar and it isn't doing you any grand favors either! You'll do this and say, why didn't we do it sooner? Hang in there!

painted maypole said...

wow.

tough decisions, indeed, but one you have thought out well and researched and are doing out of LOVE, and so have confidence

Mad said...

It is the right decision, Kyla, but, oh that picture and all it's resonance! It makes me weepy for the little girl and her unicorn.

Magpie said...

K, I think you're doing the right thing and I think you're almost there in believing that. Much luck.

natalie said...

I sit here without words of comfort. I don't even really know what I want to say other than that you are one amazing mother. You and Josh are amazing. I'm so sorry you have to make this decision. Yet, I know you WILL make the best decision for your daughter, so she can be the best KayTar possible.

I've never done this before, but I feel like you might need some (((hugs))) and much love.

~aj~ said...

I know this decision was not an easy one. I also know that you and Josh are doing the right thing for KayTar.

When I think about her having a body that will be more capable of keeping up with her spunky, spirited personality, it makes me smile deep inside.

Cori said...

You are an amazing Mother. It will be a sigh of relief when Kaytar can do all the things she wants to do without getting sick. Hopefully these procedures will add a level of peace within your home. Not worrying about how much food she is taking in will be a huge sigh of relief. I love your picture.

jen said...

oh honey. i'm so sorry.

sheree said...

yep...this is hard situation to have to go through but there is NO DOUBT that it is the right one for KayTar! She can't be "the girl in the platic bubble." This is going to help her tremendously! You are awesome Kyla!

Dr. Cason said...

I thought about this for my so too. Should I keep him at home. Stop practicing. Pull him out of daycare.

Truth is. We can't do that and if everything points to that little plastic button then that might be the best for her.

God Bless

tierd said...

I wish you didn't have to make the decision at all - but you are doing the right thing for her to ensure her health. You are such a great mom - you are both lucky to have each other.

And I love the picture - so, so sweet.

kia (good enough mama) said...

What a tough thing for your whole family to go through. Moms shouldn't have to make these kinds of decisions about their babies. I really feel for you.

I hope that Kaytar's surgery goes smoothly and that, soon afterwards, you'll see how well she's doing and know that you've made the right decision.

My best to you all.

InTheFastLane said...

I hope that this does the trick to keep your little one moving forward. What hard decisions. But, they will be the right ones.

Liana said...

Snacking on bacon? That's my kind of girl! I don't think I even ATE bacon when I was her age!

Anyway, Trust Yourself (and Josh). You two know best. It's so obvious from this and previous posts that you have completely thought this through and just want your daughter to be as healthy as she can and have the best life she can, and that these surgeries are her best bet right now.
You guys are great parents!
I truly hope that all will go well with the surgeries.
*hugs*

jeanie said...

My nephew went from a NG tube to a button - it did make things easier. Of course, it seemed wierder - but then, they weren't living in normal anyway and knowing enough was going in to help him get healthier was a huge blessing.

Good luck on it all!!!

Lisa b said...

Kyla I know this is heartbreaking after all your hard work but I promise the first time she gets sick and refuses to eat and you tube her some pedialyte and manage to avoid the hospital it will make it all worthwhile. I promise.

I am glad the consult went well. Our cold, heartless socialist hospital described the procedure to us as we were waiting to hand her over. They made it seem - actually one nurse told me she thinks of it like getting your ear pierced. I hate that nurse, but it did make me feel a little better about it! hope it does you as well.

NotSoSage said...

Kyla, in every way, for as long as I've known you, you have put your concern for her first, and that is exactly what you should be doing. What a difficult decision to make. What wonderful parents you and Josh are to do what you know is right.

Hugs.

nomotherearth said...

What I'm hearing from you is that it's the right thing to do. You made a good decision.

You're doing a stellar job, mama.

crazymumma said...

It will improve things. It simply is the next logical step. I think you and Josh are just so strong in your parenting and decision making.

Tracey said...

I can't imagine living through that... Having to make medical decisions for our children seems like something better suited for a qualified medical professional. But the problem with medical professionals is that they DON'T know everything! Sucks.

Hope it works out for her...

deb said...

I'm not a huge fan of feeding tubes but to be honest my experience of them is at the end of life, prolonging a death.

But in your daughter's case it sounds like a good idea. One of the boys that rides with my daughter is fed by g-tube, he's a healthy, happy little guy and it works well for him. Hope it goes well.

Aliki2006 said...

I'm so sorry about the agonizing aspects of this decision. But I know what you mean about feeling somehow relieved to have the decision taken out of the debate--she needs the tube, therefore the answer seems clear. But I know it's tough...

womaninawindow said...

Why aren't there absolutes? It'd make everything so much easier. I know you're making the right decision becuase you wouldn't have it otherwise.

kittenpie said...

Sounds to me like you are doing the right thing for the right reasons, but it is always going to be hard to think of putting your child through a surgery. If it helps any, I know an adult diabetic who made the decision to get a button installed for insulin delivery, and last time I talked to her, she was thrilled with the ease of it.