Operating Room....Here We Come Again!!! AUGH!

As Randy reported earlier today, Connor's heart rate had come down significantly in the morning and mid-morning hours. It has, however, risen again with his level of distress. We've been meeting with the lung specialist's and the GI specialists and the gerneral surgery team and the cardiac team the past couple of days and the bottom line is this.....it looks like we're headed back to the OR. The general surgeon believes that the hiatal hernia that Connor has is defined enough to be causing him distress so they would like to get that fixed. They also have known, for months now, that the Nissen Fundoplacation that he had done has failed by 50%. They would also like to re-do the wrap on that to see if it will relieve any of Connor's "suspected" reflux. The surgeon mentioned that they will not be able to do this one laproscopically because they will not be able to see as much that way. What will end up happening is they will extend his open heart surgery scar at the bottom of his sternum and continue it all the way past his belly button. Once they have him opened up they feel that they will be able to get a better picture of what is going wrong with his basic anatomy and hopefully be able to fix and repair the problems they find.

To be quite honest, I am glad that there is a plan in place, but we are also aware that it is not a for sure fix of anything. It could very well be a shot in the dark. We certainly hope that it will provide Connor with the relief that he needs, but I think we'll believe it when we see it. Connor also has to get well enough to even go in to the OR. Today they put him on an antibiotic that they hope will begin to kill whatever is attacking his lungs and airway.

We tried him off the c-pap for about 30 seconds today and he simply cannot handle it. He immediately became agitated and dropped his oxygen dramatically. They are continuing to sedate him because once he wakes up, he is fighting to get that c-pap off his face and he has a very difficult time getting settled down. My oh my it is difficult to see Little Bug in such a state once again. We had so hoped these days were behind us, but we know now that this is the way things are going to be until we can get to the bottom of it. We are frustrated and tired, yet hoping and trusting for the very best for Connor. We came home tonight to regroup and get some rest. I will head back to the hospital tomorrow morning and I pray that my outlook and perspective will resemble something more positive than it has been the past couple of days.

Dear Lord, Please cradle our sweet Little Bug this evening when we are so far away. May he hear your sweet voice beckoning him closer to your heart. May the angels sing to him and keep him company in his sleep. May your strong, healing hands cover each area of discomfort and bring him healing and peace. Surround his room with the gentle wind of your spirit and may all who enter be blessed by our fearfully and wonderfully made little boy. We thank you for our son, he is a gift from you and we cherish him with all of our hearts. Please take away his pain and let him be the little boy he so desparately wants to be.....happy & healthy and living at home. If it be your will dear Lord, please grant our requests and heal our son!! Amen.

Lovebug Hugs,
Lori