Wednesday, November 17, 2010

Back To Routine -

What a great extended weekend we had in Escanaba (our hometown).  Matt was up at camp deer hunting and the girls and I stayed at my parents house.  We were able to visit with a lot of family and friends and it was great to see everyone.

Now that we are back in Wausau, we are back in routine.  I do have to say being away from home is hard to stay on track for Allie's feeding schedules, medicine, etc.  For some reason when we are "away", the days just go bye so much faster and we lose track of time and before we know it, we missed a feeding or two.  Now that we are home, we have no choice but to get back into routine and get Allie back on schedule.

It has been increasingly hard to convince Allie she needs to wear her backpack and pump 4 times a day.  It's becoming more and more of a struggle every time we have to hook her up to her pump.  I'm tired of hearing the words, "NO MAMMA".  She screams it every time I have to hook her up for her feeds or give her her probiotics.  It breaks my heart but I have no choice.  Seriously, sometimes I have to have someone help me hold her down just to hook her up to her feeding pump.  It's getting almost impossible because she hates it so much.  Once she is hooked up, she does okay with it but continually asks, "done yet"?  I feel like I"m punishing my child for not eating orally by making her be hooked up to her pump and backpack or giving her a bolus feed.  Allie absolutely hates being fed by her tube and she doesn't enjoy eating orally so what am I to do?  All of her screaming and fighting in attempts to avoid the tube feedings, is taking it's toll on me.  After all, a mom can only hear the words, "no mamma" so many times. 

I know some of you may be thinking that I should just hook Allie up to her pump/backpack and feed her - END OF STORY.  But when she is fighting me and kicking, screaming, holding her hand over her button or rolling all over the floor having a tantrum all in an attempt to avoid being hooked up, it's sometimes physically impossible for me to pin her down long enough to get her hooked up for her feeding.  Not to mention, having to pin your child down 5 times a day for a feeding/medication is cruel.  I know she needs this to survive but it's still hard to do.

So, where did all this "anxiety" about being tube fed come from????
Allie never had any problems being fed with her feeding tube prior to MARCH 2010.  When Allie had her peg tube removed and her mic-key button put in  back in March every thing changed.  The procedure to change out the peg and put int he mic-key button completely traumatized her.  Allie has never been the same since that dreaded day.  Her attitude towards tube feedings and just her behavior in general has changed.  She is very stubborn and strong willed and when she doesn't want you to touch her mic-key button, she will not let you.  Hence the whole reason she is in mental health therapy.  I requested for Allie to be sedated for the 5 minute procedure but CHW told me it was against their policy to sedate children for this procedure.  I didn't want her fully sedated just wanted her to have some verset so she wouldn't remember it.  After all, it is a painful procedure.  They are pulling a mushroom shaped "blocker" on the inside of her stomach through the small hole in her abdomen - ouch!!!  I'm still mad at myself for letting the doctors do this to her.  I wrote a letter to the hospital stating how it has traumatized Allie and how I feel that children should be able to be sedated for this 5 minute procedure.  Every time we are at Children's for an appointment, I mention it to the doctors how Allie was traumatized and how it's not right children have to go through this everyday.  At our last visit, the doctor confirmed they received numerous complaints like ours and they are now starting to look into the procedure and will most likely start sedating for the peg tube removal.  If you have a child that is going to have this procedure done, I highly recommend you have your child sedated if possible.  Don't get me wrong, not every child is traumatized like Allie but why take the risk.  The doctors and nurses say the procedure isn't painful but I have seen Allie go through it and her screams and cries confirmed to me it's very painful - even if it only lasts a couple minutes.

Ever since this procedure, it's been a struggle to hook Allie up for a feedings, however now that she is getting bigger, smarter and has her own opinion on things, it's becoming increasingly hard to hook her up for a feeding.  If anyone has any experience or advice on tube feeding a toddler that doesn't like to be tube fed, I would love to hear from you. 

I will leave you with a coupe pictures of Allie back in March 2010 - the day she had her peg tube removed and her mic-key button put in. 

This is Allie at 2 years old - this is the day she was having her peg tube removed and her mic-key button put in.

Allie tube feeding her baby (right before they removed her peg tube)

Allie not feeling good about a half hour after her peg tube was removed and her mic-key button put in

Allie checking out her new mic-key button (March 2010)


  1. OMG Jodie!!!! We went through the same was HORRIFYING. The tube broke when they ripped it out! The almost admitted her to the hospital to get it out by endoscopy. When they finally got it out, her stoma looked like she gave birth through it!...I'm gearing myself up to blog about that one...I still have nightmares about it and am still really angry at myself for sitting back and allowing it to continue. I should've stopped them and INSISTED on sedation!!!
    Ava was traumatized for about a month but was young enough that it isn't even a memory for her anymore.

  2. Is there anyway to convince Allie to hook the tube up herself? I suppose not if she is that upset by it. Is there a human version of clicker training? Sorry, clearly I have no answers, but I hope you guys can find some way to solve or manage this.

  3. Wow Allie is an amazing little girl i could never imagine at that age, my cousin had a mic-key put in but he was 7, still hated it. what they would do is bribe him, if he was good about the pump for a whole day he would get a toy, then he had to be good for a week, then a month. this worked well and gave him something to look forward to. Eventually they stopped offering toys and he didn't even notice hes doing really good now and is no longer fighting it.