Monday, May 7, 2012

Feeding Tube: A Week in the Life

Saturday
After several hours of learning down at CHOP, I was the one to perform Aidan's very first tube placement.  The pride I felt in my success was indescribable.  Right up until Aidan ripped it out, roughly three minutes later.  We left it out, deciding to let him nap and to place it again when the Home Care Nurse arrived later that afternoon.

When the nurse came, I was again the one to place the tube.  This didn't go as smoothly as it did down at CHOP.  Aidan coughed and gagged and screamed and tried to vomit the tube up.  But we did successfully get it placed, and we confined Aidan to his "no-no's" for the rest of the evening.

Sunday
Things went shockingly well.  Aidan woke up with the tube still intact (whoa!) and I ventured out to morning playgroup with him.  The other kids at playgroup were fine - not even vaguely curious - and I felt (for the first time) that we might be able to do this after all.  I successfully fed him by pump in the restaurant, and again later on in the mall.  I thought all was well.  I was totally smug.  Ha.

That night was the first (of many) that I would wake up to a pump alarm and rush in to find that the flow was restricted due to my darling boy's habit of wrapping the tubing around his neck.  Please explain to me how one calmly goes back to bed after that?

Monday
Back to CHOP for a GI checkup.  Upon arrival, I noticed that the feeding port had opened itself up in the car, leaking large amounts of stomach contents all over his carseat.  Aidan was, of course, screaming bloody murder because he was starving - and I was in tears.  I had no spare clothes with me at all (Aidan hasn't needed an outfit change since he was a NEWBORN!) and we wound up going into our appointment smelling like stomach (Not a good thing.  Really, really not.)   Aidan left CHOP in nothing but a diaper (classy) and we drove to Exton mall to meet up with a friend.  I took him right to a children's clothing store, where I frantically scoured the racks for something inexpensive in his size.  Having no shame whatsoever, I dressed my smelly, pukey kid in his new clothes in the middle of the crowded mall.

We walked around the mall for a bit, with this friend and her beautiful daughter, and decided to stop in a children's shoe store.  I took Aidan out of his stroller to try on shoes and noticed that he had AGAIN opened his port and emptied his stomach all over himself.  Sigh.  Back to the clothing store, another new outfit, another mid-mall change.

Onward to the mall's playground, where Aidan ran and laughed and played.  I got a little too confident there - even though I had taped the feeding port closed, it popped open and emptied more stomach contents onto the ground.  At least his outfit was dry?

At that point, we conceded defeat and went home.  That evening began the alarm problems.  The pump alarm went off at least 4 times.  Who needs sleep?

Tuesday
First day of daycare with the tube!  Which, of course, leaked all the way into school.  Sigh.  The kids were great with it though - nobody touched it at all!  More pump alarms, all night long.  Sleep is becoming a distant memory.

Wednesday
Today, the feeding port started leaking at daycare.  No one could figure out how to plug it up, so Tom had to go get him.  Three more pump alarms that night, one of which was due to a strangling baby.

Thursday
Two pump alarms - maybe we're getting better at this?  Sadly, we're not.  Aidan pulled his feeding tube for the first time since the first day.

Friday
Aidan went to school without his tube.  No leaking.  Glorious.  After work and school, Tom wrapped him up and held him down while I placed it again.  We were rewarded with alarms all evening long.  Will this never end?

Saturday
Never one to go out quietly, Aidan finished out the week with a dramatic tube-pulling just before the Home Care Nurse came by.  This time, it was Tom's turn to place the tube (he did great!).   Gymboree was difficult - parents seemed to be encouraging their children to avoid Aidan, which is absolutely heartbreaking.  He's no more fragile than any other child.  Please don't ostracize him.


To Recap:
Aidan's doing great.  He's gained weight, he's happier, louder, more active, and a better sleeper.

We, on the other hand, are exhausted, stressed, and discouraged.  I have to believe this will get better, but it was a rough, rough week. 

14 comments:

  1. You are doing great, C! And Aidan is looking happier and chubbier every day :)

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    1. Thanks Nykki! We're really excited about the progress he's making!

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  2. I hope things get easier as you all (especially Aidan) get used to the tube. Also - I'm sooo jealous that you live by the Exton mall. I used to go there twice a year, on my way home from my dad's eye appts in Philly, and I loved it.

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    1. The Exton mall is a lot of fun, and way less crowded and crazy than King of Prussia!

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  3. You are doing an amazing job! Keep reminding yourself on the rough days, and if you can't, you can count on us to remind you! :)

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  4. They say the first month of a new job is the most stressful as you learn your new role, your new tasks, how to do it, and figure out how to make it all work - this thing that is totally different and scary than that older thing you were used to which was easier (but also harder at the beginning, too). I'm confident that you will get to that place where this becomes easier to, and the next change, and the one after that, and the one after that. And in the meantime - you'll have all your friends and family here supporting you, commiserating with you, and applauding you whenever you need it.

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    1. Thanks, M. It has to get better sometime.

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  5. So happy to hear he is doing well! I'm sorry to hear that Gymboree was difficult, though :(

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    1. I'm a little bit thin-skinned. The good part is, he couldn't possibly care less.

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  6. I am glad that Aidan is doing well, gaining weight, and happy!! I can't imagine the stress you are going through, and am amazed at how well the 3 of you are handling it..you are so strong!! I hope it gets easier :)

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    1. Thanks Jen :) I know it will, it just takes time.

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  7. Been there, did that - all of it!!! It will get easier. The learning curve for the tube is steep.you will get the GOOD tape and use a lot of it and the port will not come uncapped. Also, you will use the tape to secure the the tube down his pajamas so that it won't wrap around his head or kink to set off the alarm. Pm me for tips. Thinking of you!!! Best, Lisa

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    1. Counting down the minutes until G-Tube time... Until then, the elaborate tape rituals continue.

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