Customer Reviews

Monday, June 13, 2011

January 2008: The Beginning Of The End

today is a very bad day.  Charlie is doing horribly.  it's a week day, but Jay's boss has been really good about giving him as much time off as he needs, so he met me up here today in the early afternoon. 

Charlie is just getting worse.  they have been having to raise the pressures on his vent continuously.  they maxed out the one vent settings, so they had to switch him back to the vent he was initially on when he was born...the one that puffs something like 100 little breaths per minute.  we're sliding back so fast i can't catch my footing.  his jaundice is horrible.  his color is awful and you can see it in every part of his body.  his abdomen has been swollen for days now, and is only getting worse.  a week or so ago they had to "tap" it.  it was where they made a small puncture to drain off the excess fluid that his liver is secreting.  that time it worked.  they drained off about three times as much fluid as they initially wanted to because it just kept seeping out.  early this morning they decided they wanted to try to tap his abdomen again.  i had to leave the room because it was a sterile procedure.  i went to the waiting room, and the doctor came out just a few short minutes later and said that it didn't work.  she tried puncturing his abdomen, and nothing came out.  she doesn't know why.  i went back in to be with him.  the place that she had punctured was still leaking a little, so they ended up putting a bag on it to collect whatever came out.  and it just kept leaking, and leaking.  everything from yellow fluid, to blood was being collected in that bag. 

when jay got to the NICU, he was shocked to see how awful our baby looked.  he was upset.  i had barely eaten anything all day so he convinced me to go out to eat with him.  we went, and it is something i will always blame myself for.  when we got back, they told us that Charlie had extubated himself again, and so they had to re-intubate him.  they put in a bigger tube since he had outgrown the one they originally put in when he was born.  the vent pressures were still the highest they'd ever been.  would he have pulled his tube out if i had been there?  i watched him all day, every day...would i have been able to stop him from pulling at his tube? 

jay and i sat with our son the rest of the day.  by the time dinner time came around, they told us that if his pressures continued at this level, or continued to rise, he was not going to survive the night.  he was almost at the maximum pressure for the new vent, and they had nowhere else to go from there. 

we went to the hospital cafeteria to eat dinner.  i couldn't even choke down a few pieces of fruit.  i cried through the whole meal.  and then i called my mom and told her that Charlie, her first grandchild, my first baby, our only son, would probably not make it through the night. 

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