When I got the call today that the continuation of Champion’s feeding therapy had been denied, I cried really hard. I cried while the messenger told me the news, I cried while I left messages for his therapists, doctor, and insurance. I cried in my car driving home, and I cried while my husband was leaving for work.
I just cried, and it felt really really good to do.
Learning about the denial for Champion’s feeding therapy (which we are appealing) was what started me on my crying spree, but it wasn’t really the root.
I was crying for what feeding therapy means to our family and what the lack of it means as well.
Champion is fed by a tube going into his stomach, called a g-tube. He got it when he was 4 mos old, after his open heart surgery.
Right now he gets 12 g tube feeds a day, every single day. He is on a blenderized diet that we blend for him every single day, rain or shine.
As soon as he wakes up he’s attached to the tube and throughout the day he receives the 12 feeds, some water feeds and some food feeds to make up the 12. He’s pretty much attached to the tube the whole entire day.
In between 7:30pm and 8:30pm he falls asleep in my arms on the couch, where I sit with him, holding him upright until he finishes the last of his feeds around midnight, and then once I’ve held him upright for about 45 minutes after the feed is done, him and I lay down in what has become our bed and go to sleep.
I am up with him several times through the night, as he wakes up in discomfort from acid reflux. Husband is in what has become his bed in what has become his room.
This is our routine day in and day out and has been for over three years. Which also means it has been over three years since I have slept in the same bed with my husband.
I cried so hard today when the feeding therapy was denied.
Champion has always been in some type of feeding therapy through our state therapy program. It wasn’t till three months ago when he started this particular feeding therapy, in an acute hospital setting with a specialized feeding therapy program that is well-known for their success at getting kids off their gtubes, that we began to see real progress and had therapists working with Champion who truly believed with us that he could become an oral eater.
Seeing him make progress, be able to swallow and enjoy food, and have therapists who truly believed in his feeding ability made the therapy a dream for me, something I looked forward to taking him to twice a week.
And it gave me hope that I would get a full night’s sleep again, that I would sleep in the bed with my husband again, and that Champion would not spend all his days and half way into the night attached to a tube.
But now, for now, in a mess of insurance confusion and bureaucracy that therapy is gone. And just for a while today with it went my hopes for what life would be like without the tube, for us and for Champion.
It felt so good today to allow myself to just cry and not care who knew I was breaking down.
It felt good to taste the salty bitter tears I had been keeping inside, thinking keeping them there was somehow preserving me and making me stronger as I fight for the best for my Champion.
It felt good to have my crying heard by people who love and care about Champion and want to help him. It felt good to hear them say, “We hear your cries and we’re going to do what we can to help get this fixed.”
Crying didn’t get appeals written or services back in place. Crying won’t change the fact that tonight I’m still holding Champion upright late into the night, or that my husband and I haven’t slept in the same bed in literally years, or that as soon as morning comes Champion will be reattached to his tube.
Crying won’t change the fact that it will take a lot of work, time, and energy that I don’t have to get the services started again.
But crying did accomplish something today. And that is that it simply made me feel good.
Let’s Talk: Ever had a time where even though crying didn’t fix it, it just felt good?
Photo Credit: memekode,
I cried and cried and cried on Monday too. 🙂 Hugs.
Doesn’t it just feel good to just cry? Hugs to you too!
I hope the appeal is successful and Champion gets what he needs x sorry you have to fight so hard but that full nights sleep one day will be bliss xx lovely to find your blog x
Thank you so much for the well wishes for the appeal. I am really hoping, praying, and believing it will be a favorable outcome. I am so looking forward to that full night’s sleep…thank you for your encouragement!
I cried, too, as I read your post. Although my situation is different, I can relate and I understand, and I am sorry about the news you got. I hope that your son will get what he needs and I hope that you will be able to get help with his care so that you can get a full night’s sleep.
Hi Kelli, thank you so much for sharing that you can relate and understand. Even though we have different situations there are so many similarities in the feelings we experience as moms of children with special needs. It is helpful to hear from other parents and know that I’m not alone in these frusturations. Thank you for the well wishes also for Champion getting what he needs and for a full nights sleep.
Been there, done that 🙂 🙁
Just a side question. How many calories does he get per day? Our daughter is on a blended diet as well. I just learned recently that there is a name for what I’m doing actually LOL. I just did it, because I didn’t want her to be on the formular. Also she has a bad reflux, but we hardly have any major problems. We don’t have a pump, but do it manually and she only gets five feeds a day. She’s growing and healthy. So maybe I could help out with a few hints what to use to increase the calories per feed. Feel free to contact me, because I certainly do know what lack of sleep feels like. Big hug!
Thank you Yvonne for this comment! You got me motivated to try manually (blousing) feeding him. We’ve tried and tried in the past and he just couldn’t keep it down. He recently had a great growth spurt and we tried again and he is actually handling it!!! I am so glad you took the time to comment, this was the encouragement I needed to try some different things (still working on sleep but reduced reflux is bound to make a difference!) He gets 1300 calories a day and 36 to 40 oz of water. Any less water and things don’t move along as they should 🙂 he burns a lot of calories with his walking and increased tone. That is awesome that you are doing the blended diet also and that your daughter is doing so well on it! It is a great feeling to still be able to “cook” for our kids and have control over what’s going into their bodies! Thank you for reaching out, I’m so glad you came by!