So. Charlie wasn’t exactly the valedictorian of feeding therapy. He did make some progress toward the end (drinking almost six of his required 30 daily ounces of formula – that’s progress. Ahem), but by then, the insurance company wasn’t willing to grant the therapist’s request for more time. I wasn’t too upset. I mean, what was a week going to buy us? Seven ounces? Tomorrow we have a surgical consult to discuss getting a G tube. We left the hospital not intending to go that route – the doctors and therapists were hopeful that he’d just *get* it once he was home and in his own environment. A home health company delivered a feeding pump (!!) and all the necessary supplies, including our monthly supply of four feeding tubes. But in the last five days, Charlie has pulled his tube six times. It’s just not working. We’re all pretty strung out.
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tube yanker18 comments to tube yanker |
  
 
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Did the therapist offer any insight about the why he isn’t eating?
I’m sorry you’ve got to go the g-tube route, but it has to be easier than the tube. I’ll keep thinking good thoughts for everyone.
I am so sorry he is still not eating by mouth and is yanking out that ng tube
I am sorry too that you have to go the g-tube (more permanent) route but hopefully that will overall be less traumatic for you all and restore a bit of your mobility.
Pumps are so portable these days. There are also there wonderful, wonderous mini-backpacks made especially for holding a feeding pump and 500mp-1000ml feeding bag. (I hate calling it that. It sounds like I’m talking about domesticated farm animals. But feeding bag it is.) The hook at the top holds the bag upright so formula stays at the bottom when you are on the go or you just have to deal with air bubbles, pausing, disconnecting, re-priming, reconnect– easy but a pain in the tukus.
If and when the yanking gets out of control or you just can’t be there (like sleep time) to block it, there are elasticized cotton ‘belly bands’ with velcro to keep those little hands off the mini-one or mic-button. Wearing onesies also keeps little hands from creeping up shirts to yank.
We also simply bought a basic rectangular vinyl-lined zip-up kids lunch pack that works beautifully as long as it is kept upright. Put it on the seat beside the carseat. Stand it up in the stroller basket. Hang it from the stroller handle with a handkerchief or a Mom-hook.
Our child loves to pull his g-tube out when he is tiffed (or try to- we are on to him now!
You guys will knock it out of the park and g-tube life too will become your norm! (if you are stuck with one longterm there ARE GI docs who work with nutritionists who as a team WILL help you blend solid pureed food with the formulas eventually should you want/need to go that route some day)
Best of luck with it all!
I am so sorry you guys are going through such a stressful time. Just to let you know, you can get feeding therapy with a Speech Therapist through Early Intervention. They can work on lots of sensory issues to help prepare Charlie to eat even while he has the GI tube. An occupational therapist might have good advice too for feeding issues.
That’s what we just spent a month inpatient stay doing.
The Early Intervention programs through your county might be free to you so they might be worthwhile anyway. I’m sorry that you didn’t have more success with the inpatient route.
We had therapists come to the house through EI, you could potentially get therapy for 5 times a week/ 30 or 60 minutes each session, with no cost to you. You might have to change therapists several times to find one whom Charlie likes, but it might help to receive therapy at home, over a much longer period of time. Again, so sorry about the stress you and Charlie are going through.
Thanks for writing about it! He is a precious little guy! Having read your stuff for awhile, nothing has been easy has it? Hoping that the progress continues steadily for all of you. I’m really sorry that insurance has been a stumbling block for FEEDING issues – that is a basic need and I cannot imagine what logic they use to limit access to those services. Will keep you in my thoughts.
I am glad that Charlie has made some progress, but I am sad that you’re going to have to get a G tube. I am also sorry that this has been such a drain you all.
Thank you for updating, though! I think about you a lot…
Charlie is still so cute and still so pudgy. I am happy for both of those things.
Dear Heather, have the doctors checked Charlie’s vitamin B12 levels?
All the best to you and your family.
Hey. Nothing much to say except that I’m sorry you, DL & Charlie are going through this.
That chunky monkey looks so much like his daddy!
You are an amazing mother. I am also a mother (of two) and if I had to go what you are going through, I am not sure that I could handle it with such grace and tenacity. My mom tells me when I am struggling in life, that some days were just meant for surviving… not succeeding, achieving or accomplishing. Surviving. It seems the world has given you too many in a row. Here’s to hoping you get a reprieve soon.
He is absolutely adorable. I am thrilled you have such a darling baby, even if he is not a great eater.
So sorry you guys are going through this! I hope really soon all this is a distant memory! He is the cutest baby ever, though!
Also, you are naturally worried with all this going on, but try to find a little space every day to put those thoughts aside and enjoy him! It’s so hard to have to deal with all this stuff during what is supposed to be one of the happiest times in your life, but time goes by so fast, and they change so much day to day, and that time is gone forever. Hugs to all of you.
I’ve been away for a while and just wanted to congratulate you and the DL, Charlie is totally adorable. I was so excited this afternoon when I thought of checking in and the first post I saw had a tiny human! Your tiny human!
Hey there….just checkin’ in. Hoping for some good news and hoping all is well!
Just sending some love and hoping things have improved!