Apr 29 10
by cara
at 9:00 PM
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GI Update: Feeding Tube Placement

After a MONTH of trying to get The Littlest Apple’s NG tube placement scheduled, I got a call yesterday asking if we could come in today to get the tube placed. Relief at long last, right?  Well, not so much.  It’s been nothing but drama, drama, drama.

The Good:

  • The Littlest Apple has gained 1 pound in only 3 weeks!  (After not gaining any weight for about 6 months)
  • We got the tube placed today after a month of waiting.
  • The Picky Apple took the day off today, and was amazing.  Couldn’t have made it through the day without him.
  • Grandparents to visit and distract.

The Bad:

  • SO much screaming.  The Littlest Apple understandably didn’t tolerate the tube placement very well.
  • I got a “trial by fire” lesson in NG tube placement.  As in, the nurses made ME do it and instructed me as we went.  SO nerve wracking.  It didn’t work the first time, so we had to do it TWICE.  It took 4 of us to get it done the second time.
  • The waiting.  Our appointment was at 10:30.  We got home at 2:45 this afternoon.

The Ugly:

  • We were sent home with no feeding pump, only minimal supplies, and no follow up care plan.  As in WE HAVE A TUBE IN PLACE, BUT WE CAN’T EVEN USE IT!!!!  And because the nurse claims that she couldn’t find any home health care agency that was covered by our insurance, it has been left entirely up to ME to call home health care company after company on our insurance list to find someone to get out here ASAP and teach us what the heck we’re doing.  This is apparently somewhat unheard of.  And I sure don’t have any idea what I ‘m doing…I’m not a medical professional.  I don’t know what to ask or what I need in much detail: “What kind of pump do you need?” “Um, the kind for night feeds for a 2 year old?  That’s all the info I’ve got!!”  The doctor, who we didn’t see until after the tube was placed, was baffled by this…it is usually all set up and ready to go, but didn’t really do anything about it.  He’s not the one making calls and setting stuff up.  Why were we even THERE?!  All of the home health agencies I spoke with this afternoon were baffled and shocked that we were sent home w/o out a care plan in place.  RIDICULOUS.  Still trying to sort this all out.  I am beyond frustrated, bitter, and down right angry about it.  This has been a truly awful experience, in terms of getting what we need when we need it.
  • In the meantime, we’re on constant alert to keep a stubborn and very angry 2 year old from ripping out his tube.  Not that it really matters, I suppose, sine we’re not exactly using it yet.  My husband’s betting it will get ripped out tonight after bedtime.
  • The Littlest Apple has stopped talking, smiling, and laughing, at least for today.  He HATES the way the tape on his face feels when he moves his facial muscles, so he is trying hard not to move them at all.  Our normally animated little guy was a complete zombie today, and it breaks my heart.  He’s miserable and mad.

NG Tube

Hoping for a better day and a more coherent post tomorrow!

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  1. Oh, Cara … I’m so sorry. I can’t imagine how frustrated and angry you must be feeling. I pray that tomorrow brings some answers and action asap!

  2. Wow – that’s insane! How could they place the tube and then have NO PLAN afterwards?! Poor, sweet, little Finn. Heartbreaking for sure. Hang in there, mama. Praying for you.

  3. My prayers are with you. And they will be with you tomorrow. And the next day. And the next. I am outraged at the care you have received. I wish you could come here to my children’s hospital… they would take care of you and the whole plan would have been in place BEFORE you entered.

    I work on computers and am not a “medical professional”… but I’ve been walking through that hospital for 20 years… I’ve seen so much. In every area, with every type of kid. And I can tell you THIS. Children are resilient. Amazingly so. He will be OK. You are not hurting him. He will not look back when he is older and feel you guys did anything bad. He will adjust… it will become part of his daily routine and he will be FINE. I know there is NOTHING harder than seeing your child like this… NOTHING… but remember – it is MUCH harder on you than it is on him, and HE WILL BE OK. No, let me change that. HE WILL BE BETTER. He will gain gain gain weight and be a different boy WHO WILL FEEL BETTER!! 🙂

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