What’s Going On, or What I Think is Going On

This is Aaron today, and one of my very favorite preemie
outfits.  We had to roll up the sleeves when he first wore it.

Yesterday afternoon, I took Aaron in for an upper GI series to try to see why he’s been refluxing his formula.  He should not be getting that up into his mouth.  And the verdict is:  the jury is still out.  I watched as the radiologist put the radioactive solution through his tube into his tummy.  The good news is we actually had to use quite a bit because as soon as it went in, he was sending it out to his intestines.  That’s called motility and his is really good.  (Lots of these kids have very poor motility.)  Then I watched as the perfect stomach-shaped image appeared.  That, apparently, was not good.  He felt like he should have been able to see a divot where the nissen was, or where it was supposed to be.  The next step was to put an ng tube (the same kind we used to feed him with prior to g-tube surgery) down his esophagus and put the barium down it for a look.   It looked to me like the two really didn’t meet, not quite all the way.  But the radiologist felt like the nissen had “dehisced” or come undone.

However, later when Aaron’s surgeon, Dr. Downey, looked at the images, he wasn’t so sure.  I really like that he admitted that the radiologist was much more experienced with reading the images than he was.  But he felt like he knew the procedure, and Aaron, better and that he saw several markers which would suggest the nissen was intact.  Either way, though, there is a problem if he’s getting milk into his mouth.

Aaron in his preemie outfit -- 3 weeks old.

So, here’s where we are.  For now, Aaron has gone on continuous feeds.  This means that his feeding pump is going for about 20 out of every 24 hours at a slow rate.  He really seems to like it.  He’s done very well, but still has a lot of gas bubbles.  However, no retching and not desats.  We will go into the hospital for a pH study of his esophagus sometime in the next couple weeks.  That will take 24 hours to do and a few more days to be read.  Then, we may have to repeat his nissen surgery.  This is much more involved than the original surgery because of scar tissue and adhesions that will have to be dealt with.  Instead of 1-2 days in PICU and a day or two on the floor, he will be in PICU for seven days.  I really like the PICU staff.  They’re a lot of fun and really great.  I’d love to go to lunch with them once or twice a month.  I don’t want to go live with them for a week, or more specifically, I don’t want to need intense medical care for  week. 

Smiling at Daddy

I’ve forgotten over the last few weeks how tenuous Aaron’s hold on life is.  The surgery itself is not dangerous, but how his heart and lungs handle it can be.  I was asked again, and it’s a fair question, how far we wanted to go with Aaron.  Again, I had to explain that as long as he wants to live, we will support it.  He asked how I would know when Aaron was done.  I replied, “He’ll tell me.”  And he will, but I was reminded that the day will come when he will be done.  The conversation is a necessary one.   I understand that.  The doctors need to know exactly where we are so they can support us.  But I hate it.  I fought tears all the way home.  I hate putting my beautiful baby through so much pain.  But I hate the thought of losing him more.   

I wish the medical staff could see him here at home.  He is so happy, so vibrant.  I can almost forget the medial equipment, at least until he pops off his ballard.  I don’t see it anymore.  Last week he started laughing when William plays “beep” with his nose.  Today I discovered that he’s ticklish under his ribs.  He’s starting to turn his music on his mobile on by himself.  He’s growing so much.   Can’t he just keep on going?  I don’t want Death knocking at my door anytime soon.