Ronan update

Here is a Ronan update.  After this one I will post a separate photo update so everyone can see what the other kiddos have been up to. It's just Ronan's update is extensive so I thought I'd make them separate. I have been getting a lot of inquiries into how he is doing.  This last Saturday he woke up and was unable to keep any food down.  This is odd since with the Nissen surgery he shouldn't be able to throw-up at least not without a lot of effort.  By lunch time I knew something was up.

I called his surgeon who told me he thought Ronan had a hard object stuck and to take him to the ER.  My instincts told me differently I knew his esophagus was closed again and that's exactly what I told Isaac as we headed out the door.

They gave him an upper GI and the liquids were going down fine.  It was seeming to me like I was being perceived as a crazy paranoid mom and they were just going to send him home.  So I told the ER doctor I don't care if the liquids went down fine the issue is pureed foods just as it was the first time.  She ordered an x-ray and the x-ray showed it had indeed narrowed.

They called his GI doctor.  I have to say his GI doctor has really stepped up on Ronan's behalf.  Instead of making us sit in the hospital until Tuesday (when he normally does endoscopies) he put an emergency team together. We were the only people on the entire surgery floor.  After the procedure was over the doctor showed me the pictures of Ronan's esophagus and it was closed completely again.

I had been right he didn't have an object stuck it had closed up again.  For moms out there I'm beginning to realize more and more you know your kids better than anyone else even the experts and more often than not you know when something is off and when you get that gut feeling you should go with it.

I was a little frustrated though when we went back to his surgeon a few days later for folllow-up.  His surgeon is the one who did the fundo and his GI doctor is the one who keeps dilating Ronan.  Therefor the surgeon did not see him on Saturday and admitted he hadn't seen the pictures or anything. Still when I told him Ronan's esophagus was closed again the surgeon said "It probably just looked like it was closed in the pictures.  It was probably fine."

Right. That is why the person that dilated said it was closed again and Ronan couldn't get food down again until after it was dilated.  His surgeon openly admitted that since he has never had this complication arise in 30 years of preforming this surgery he has no idea what the prognosis is or the right way to proceed.  I did not find that too comforting.


Basically now his surgeon wants to dilate him forever every two weeks to see if it finally decides to work and his GI doctor only wants to do it one more time because he is concerned of rupturing Ronan's esophagus.  His surgeon is worried about having to repeat the surgery.  I guess it all comes down to liability with the doctors.  Which I total get but what about my son.  They need to quit arguing and come up with the best possible solution with the known facts or Mama Bears going to come out and make the decision for them.

For now that is where we are at.  He has his next dilation on November 3rd and we'll go from there.  All I know is the thought of putting him under every two weeks sounds awful especially since his airway closes every time he is put under and he always needs steroids to fix it.  What a crazy road this one surgery has lead us to.