Sunday, July 29, 2012

Ups and Downs

Now that we are home with the ng tube, we are experiencing a roller coaster of events, but hopefully now has evened out.  Last night Levi's tube got clogged, so we had to pull it out and replace it with a new one.  Easier said than done!  We each tried to no avail, then called my sister Misty, who is a nursing student and just went through tube placement training.  Nope, she couldn't get it either!  So at 10:00 in the evening Mom, Misty and I took Levi to the local ER.  After going through the regular questions about his medical history, the triage nurse called back to ER staff and told them why we were there.  "He has huge medical issues," she said.  "Huge!"  It really brought into focus how we get used to things.  This is our normal.  We don't spend our days thinking that he has huge medical issues, and the staff at Cardinal Glennon takes it in stride as well.  It was almost funny to see how nervous the nurses, and even the doctor, seemed around him.  They were great with him, but it was evident that they don't deal with this kind of thing every day.  And all we needed was a tube placement! lol

I was really close to my breaking point last night.  After spending days in the hospital, dealing with the newness of tube feeding, trying to comfort a crying baby for hours, and worrying about WHY he was crying, I just didn't think I could handle any more.  It seemed to me that he had been super fussy since we had begun the 2 hour bolus feeds every 2 hours, and I was concerned that he wasn't tolerating it in his little tummy.  So my sister asked me if he was vomiting.  I swear, the heavens opened up and the angels sang!  I realized that if he truly wasn't tolerating the feeds that he would be throwing up and having more issues than fussiness.  This is something I should have realized, but sometimes when we go through so much difficulty in a short period of time, and latch onto a negative thought, fear can quickly set in.  Thank God Misty intervened with a voice of reason.

Today has been a lovely day!  We went to 3 ounce feeds every 3 hours and he's doing great!  He's been happy and able to entertain himself at times.  We sat on the deck for a long time enjoying the smell of honeysuckle, the chirping birds, and nice breeze.  It's been a while since we've been able to just relax and enjoy.  It was glorious!  Hopefully it will only get better from here!

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