4th Birthday Photo Session

4th Birthday Photo Session

Saturday, September 17, 2011

Rockin' Bean

So, they were unable to get the NJ tube up Andi's nose.  Good thing I got the ENT Dr. to add scope/enlarge as needed to her To-Do list during surgery.  Andi's Dad stayed with her last night so I could get some sleep at home.  Apparently, this was a mistake, because Andi found it a great treat and wanted to stay up all night.  She was so incredibly tired she'd go from laughing and playing to crying.  He left her crying this morning to come home and get me.  He brought me back and when I walked in, she was snoring.  Only confirms that she was just too excited to hang with her Dad! 

In any case, it's been a rather typical day so far.  Her second feed of the day, she sat in a high chair and had some vanilla yogurt and some apricot nectar to drink.  She did really well, and fell asleep after some serious rocking.

I was able to meet the Director of Pediatric Surgery, as he is today's Attending Physician, during their rounds.  I was able to tell our story, share of our anger, frustration and concerns, and the words, 'colossal failure' repeatedly.  He had me take out the button, and an hour after her feed, they got to see the leak with the balloon in, and then a major leakage when the button was out.  In any case, he is supposed to be setting up a time when we can pow-wow with the new surgeon about the 'revision' and our list of questions.  I assured him that we like to be educated about what we do to Andi and 'we aren't totally sure we want to put another hole in her, being this one was such a colossal failure!'  Man that felt good to state, repeatedly.  I also was able to share with him that we had just returned from seeing some of our nurse friends on 10N, where we lived for many months, and they all said how they remember how much it leaked and they were horrified that we were still dealing with it!  "They haven't fixed that yet?"  Everyone else gets it, I don't understand why it's taken 14 months and two hospitalizations for the others to get it. 

In any case, Andi is off the IV, but given she leaks, we're going to hook up the IV tonight to use in junction with her g-tube overnight drip.  She is on day 3 of another round of Operation Poo Watch again.  Might have something to do with not getting fed for 13 hours yesterday, but still, I've made sure that everyone knows that she hasn't gone again.  Again, if you ever need a conversation starter, then just ask me!  I'm full of great ones!!! 

So, the lights are down and the Bean is snoring.  Her pediatrician is attending tonight, so, least she'll get to see a familiar face.

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