It happened a lot faster than I expected.  Last week, we went to our very first G.I, after a small battle.  See, our surgeon already gave us the approval for surgery, but he wanted us to be sure of our decision, so there’d be no regrets.  Well, the day before, the Nurse Practitioner calls Louie and tried to finagle out of the appointment (ok, so it wasn’t on purpose but it ticked me off).  Long story short, she cancelled our appointment, without telling us.  It was pure chance that I caught it the evening before.  Then they tried to move the appointment to a different time, but I wasn’t having any of it.  At the end of our conversation, she told me frankly, “You know you’re seeing NP, not a doctor.” Yes, I knew this.

It was obviously an important appointment, since the doctor did indeed end up in the appointment with us.  We discussed the PH Study (surprisingly, normal…), his feeding habits, his recent gagging issues, his other conditions that would affect decisions regarding surgery.

In the end, we all agreed to do the G-Tube (feeding tube through the tummy).  It was scheduled the following Wednesday.  As in 2 days ago.  It was quite a scramble to get everything together. 

The surgery went well.  The first day was the hardest.  Typically, surgery sends you home the next day, but G.I. was concerned with re-feeding syndrome, which basically would lead to heart problems.  Surgery wanted to send us home the next day, even before the surgery, regardless of the note.  I made sure that didn’t happen, which got us switched to the G.I. team the next day.  They’ve been a lot more cooperative. 

I was nervous, scared, and excited.  I doubted myself even though I knew it was what we needed.  To take the pressure off, to have enjoyable meals, not worrying about calories.  But surgery is scary.

While we waited for him, I couldn’t help but feel this was only the beginning.  We’ve already been told by orthopedics that we need to do some tendon surgery for his hips but we postponed, wanting to give Botox a chance.  But mostly, we felt he was awfully young for such a procedure and would mark the beginning of many surgeries to come.

It’s a little unnerving to think how accustomed to hospital stays I am. 

Tomorrow, LJ will probably be discharged.  Tomorrow is also the 3 year anniversary of the first time we got take LJ home from the hospital, 2 weeks after he was born.  From the same hospital.  Just thinking about it fills me with mixed emotions.

A prayer was whispered everytime the chopper took off for the child they went to transport



2 Responses

  1. Hang in there. I promise you that very soon you will only wonder why you didn’t get the tube sooner. It can be rough right at first but hang in there. It gets better! If you have any questions don’t hesitate to ask me. I luckily had friends to go to and that made it so much easier! I hope you are home soon!

  2. […] got his Botox in October.  They raised the dose since he’s gained almost 9 lbs since his surgery!  Every time we go into this appointment I worry about it’s effectiveness (it decreases […]

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