Pump Problems

About a week and a half ago, I was putting Allie to bed and got her all hooked up to her night time feeding pump.  For about a month now, she keeps thinking that she cannot move (sit up, roll over, etc) while hooked up to her pump, so this particular night, she was crying that she wanted to roll over.  I picked her up and rolled her over - what I didn't know is that I was also pulling on her tubing which was tugging real hard on her Mic-key button.  Allie was screaming and I just thought she was being crabby.  Then she started screaming, "my button".  I looked and her button was almost pulled out.  I freaked, she freaked and everything was down hill from there.

Allie is generally very cautious with her button.  The procedure to remove her previous peg-g tube was traumatizing for her and her perception of her mic-key button has never been the same.  So, now with me almost pulling Allie's button out, she is even more traumatized. 

Since that night I traumatized her, she hasn't slept.  When I say, hasn't slept, I mean it.  She has been up 15  or more times a night just screaming it hurts.  We all know there is no lettering a tube fed child cry it out - you just never know if she's tangled in her tubing, or if her button is being pulled, etc. So 15 times a night, Matt or I would go in and check on her and 99.9% of the time, she was fine, just screaming because she was scared her button would hurt.

On Saturday night, I was so sleep deprived, I got up at 3:00 and just disconnected Allie from her pump - I couldn't take it anymore.  We had been getting up with her every 20 minutes or so - it was crazy.  Plus, it had been like this for over a week and we needed sleep!  After disconnecting Allie that night, she slept till 8:00 the next morning - it was great. 

I decided 3 nights ago, we would do a trial and see if we could figure out a way to get Allie off the night time pump.  Keep in mind we did this about 4 months ago and it didn't work.  Allie ended up vomiting most of her daytime feeds because her tolerance was so low and her tummy couldn't handle all of the liquid food in a 12 hour period.  We even tried her wearing her pump and backpack during the day so she was continuously fed - all of this was tried just so we could avoid the night time pump. The backpack and pump during the day turned out to be a complete nightmare and Allie hated it and put up a full blown fight every time we had to hook her up.  So 3 months ago, we caved and put her back on the night time pump.

Well, we are at the point again where she needs to get off the night time pump.  My bright idea - we will give her a bolus feed once or twice throughout the night and keep her off the pump. We have done this for 3 nights now and it's worked great. Last night we gave Allie 4 oz of blenderized food with a 1 oz flush and she handled it just great.  She doesn't like to be woken up for her feeding but she's adjusting very well.  The first night she screamed at me the whole time I fed her, the second night she cried when I touched her to hook her up and last night she rolled over for me to hook her up then went back to sleep....amazing!!!

So, I am happy to report that for the past 3 nights, Allie has slept and slept and slept!!!  It's amazing what decent sleep will do for a person - Allie and I are much happier!!!!!

My princesses on Valentine's Day

Silly girls!

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