Saturday, August 1, 2009

WARNING - RIDICULOUSLY LONG POST!!

We have been discussing, praying, and researching a very big decision the past few months. After much consideration, we have elected to pursue an intensive feeding clinic for Noah. We have reached a point that we never thought we would in terms of his feeding issues. We have attempted, on many occasions, to aggressively wean his tube feeds in hopes to stimulate appetite, with each effort ending the same. He will not sustain himself. He does not drink but at best 2oz on any given day and will go, sometimes days without putting any food to his mouth at all. There have been many occasions while bathing him or changing his diaper that I am in tears to see how skinny he is. Although I understand that some kids are just small, or skinny by nature as children, this is different. It truly breaks my heart. We have maxed out on the amount of calories that he will tolerate by tube. We have found the two best therapists in Ft Wayne, that both seem 100% devoted to him. We have all concluded that their time with him, while positive, just isn't enough for him to make the progress he so desperately needs. I can't tell you how many conversations with people and medical professionals I have had about his feeding issues. It is the most misunderstood and frustrating topic that usually ends in the same place every time. The truth of the matter is that Noah has never really eaten enough to sustain himself, but we do know that he wants to eat, he can chew and swallow to a certain extent, but he has always had trouble taking any volume, especially liquid into his stomach, hence the need for the g-j tube. Plus, each time the g-j needs replaced, it requires putting Noah through yet another procedure. I am sure that being two, there is a huge behavioral block, as well as associating food with pain, as well as the anatomical structure of his stomach and digestive system. 44-69% of CDH kiddos will end up with supplemental tube feedings an up to 50% are still tube fed by age 1. Taking a long hard look into the next two years, we feel like we are swimming up stream. He is still requiring 12 hours of continuous j feeds at night, squashing any hope of the natural fasting time during sleep not to mention keeping him away from the prospect of a big boy bed anytime in the near future. Watching a typical two year old and their love of food just makes me so sad of what Noah is missing out on. The bottom line is that his quality of life will improve by leaps and bounds if we can get him to nourish himself.
Okay, so what does this mean...
Noah, myself, and Elliot will be packing our bags and heading to Evansville, Indiana to an intensive day feeding program for 8 weeks. Wow, this has been a huge decision, as it means once again, our family is divided. Evansville is 5.5 hours away from our home, making the commute a difficult one. We have spoke with many different clinics in Ohio and Michigan, and Evansville kept coming out on top for us. We must be covered under insurance and heading out of state would make it less likely to be covered. The biggest blessing is that we have little to no wait time to get in, other than the insurance red tape, housing, and setting up childcare for Elliot. All this being said, we could leave as early as a few weeks from now. I am feeling major guilt knowing that so many families are still waiting for availability or insurance issues. The program consists of five days a week, all day. He will eat all of his meals and snacks in the clinic setting, but be able to come "home" every night with me to sleep and nap. The multidisiplary team consists of a pediatric gastroenterologist, nurses, phsycologist, OT, speech pathologist, feeding technicians, and dieticians....it takes a village, right? There is no force feeding involved. They will use a combination of oral motor exercises, chewing exercises, texture grading, intervention strategies and other feeding techniques. I have been reading different case studies and the results are amazing...most of the studies I read of kids that were 100% tube fed for most of their life, had their tubes discarded after 10 weeks of treatment. Wow!! Now obviously there is no guarantee that this will work, but we have to try it. It would be better to try and fail, than to never try at all and continue with conventional methods that we know are not working.
So I am am working out details now and trying to figure out how everything is going to work. It will not be easy, but I keep reminding myself, it's only 8 weeks, compared to the possible years we are looking at now. It is going to be hard on everyone, especially Noah. I am sure he is going to hate it. Zane is getting used to the idea and he will have lots to keep him busy. School, football, friends and family will consume most of his days and I will do my very best to come home as often as possible to see him. Elliot is coming along and I will be putting him in daycare during the days while I am with Noah. I have left him at the church daycare for an hour or so, but other than Grandma's, he's never been away. I am sure he will be fine, it's Mom that always suffers, right? :) He is still nursing and just now starting to take solid food, so I am hoping I can get the whole pumping thing worked out. Although he is on a schedule at home, I am not sure it will be followed the same in daycare. Brian will be staying back to work obviously, and keeping things going here at home.
I am going to start putting updates on Noah's carepage as well. Many people have expressed to me that they are not able to get updates through the blog, plus I really want to keep a journal of his daily progress.
So, we are excited, scared, nervous, skeptical, all the emotions I thought we would be. I do know that in my conversations with people at the clinic, I have been so encouraged. Talking with them is like a breath of fresh air. They are devoted to feeding issues and have pretty much seen it all. I don't feel like I am defending or explaining his feeding issues, they just "get it" and are ready and willing to help him.
We hope to have many more details pulled together in the upcoming weeks!

7 comments:

Weylin and Tori said...

Wow! You are doing it! I am intensely jealous that you can get into a program so quickly! I really hope and pray that this is exactly what Noah needs! I so feel your pain in this feeding area, and you know that! I cannot wait to hear how well Noah does! We'll be thinking and praying for your family!

Love,
The Douglas'

Aep said...

Carrie, My prayers, thoughts, and best wishes are with you all and Noah. I can't imagine how this will be but you are right, you have to try it. Noah has amazing parents and all will go well.
Hugs and prayers,
Ana and Marco

Jeff Handley said...

Best of luck with the clinic. It's the right thing to do for sure.

You guys are always in our thoughts and prayers.

Love,
Jeff, Kelly, Xander, and Xaven

brad.kellie.carter.lucy said...

GOOD LUCK! I will be checking in regularly to see how the program is working. This will be our next step after the Gtube for Carter. I really hope it works for Noah and we'll be keeping our fingers crossed for you.

Elizabeth said...

I like that approach too - UVA Kluge's is the same. I know other end of the country. But I would take off from work and babysit :-).

Don't feel guilty at all. Remember how far Noah has come from and how far he will go. I have a feeling he will take to it like a fish to water - it may take a few floundering moments but it will happen.

I am so interested in following you all again through this journey - and know you have a cheer section!

With thoughts and prayers,
Elizabeth

Jean ashner said...

Sounds like a sound plan! You have really done your homework on this one and I pray with all my might that this works out greatly for Noah and gets him on track and out of the feeding trouble cycle. I know it has been a thorn in all your sides since forever it seems so I will be sending lots of prayers your way. It takes a lot of courage and strength to make such a commitment. So proud of you! Praying this does wonders for Noah! Keeping you all in my prayers!

Jaime's World said...

Carrie,
I just read your update...WOW! I don't even know what to say. I'm sad about Noah's feeding issues, but I'm thrilled that there is a potential solution out there. I'm sorry your family will be broken up again, I know what that's like and while it's hard, it's the right decision! I wish you all the best! (Safe travels, too!)
Love,
Sheryl

P.S. If you've ever wondered why Jaime doesn't have feeding issues it's because he is a RCDH, from what we've been told, his stomach was never displaced so no major feeding issues should occur.