Home at last

I apologize for just now sitting down to update everyone. Today felt like the longest day of my life. The CAT scan was delayed until 1:30PM. I sat in a quiet room for nearly an hour waiting to speak with the anesthesiologist. Henry fell asleep in my arms and I just stared at him. I pushed back his jet-black hair and studied the softness and peacefulness his face. He slept so deeply, content and trusting. Anxiety welled up in my heart. I felt like a huge lump was in my throat. I breathed deeply, in an attempt to hold back the floodgate of tears, built up over months of trying to keep it together. I fought an overwhelming sense of panic and delirium. I wanted to just run, and take him far away, from there. I rehearsed over and over in my mind the questions I had for the anesthesiologist. "If his airway is so reactive and swollen are you sure it's safe to sedate him again?” "Do you feel the benefits out-way the risks, is this test really worth it?" “What will happen if he swells up again?” I had this overwhelming sense that something horrible was going to happen. I prayed, "God help me keep it together, God protect my baby, help me ask the right questions, don't let them do this to Henry if the outcome will be disastrous."

The anesthesiologist had a calm and reassuring presence. I articulated my questions without emotion. He answered with confidence. I signed the forms, I kissed my son, and I handed him off to the nurse. Then I walked away. As I rounded the corner it hit me like a crushing wave. I couldn't hold back any longer and I ran to the nearest bathroom. I shut the door and I sobbed and I cried out "dear God, please don't take my son, please bring him back to me safely, I can't do this, I need you, please."

And then it lifted, the panic and the fear melted away. I know it was your prayers for me that wrapped me in His peace. I walked out and saw my other kids who had come to wait with me. In just a few moments they called me back. It was over and Henry lay peacefully in his crib. He was breathing on his own. He didn't even need any oxygen. And I thanked the Lord again and again for getting me through that darkness.

The rest of the day went by and then the pulmonary doctor came to see us. Do you know what she said? The CAT scan was normal. Henry's trachea was fine and there was no "other" defect as previously thought. She looked at his lungs on the scan as well and felt that in spite of the swelling that occurred the other day, his lungs looked good.

She told us she thinks he was getting over a cold, which could have possibly caused some swelling when they tried to do the surgery. She feels the cleft repair is absolutely essential for Henry and that it should be reattempted in July. The other good news is that the Children's Hospital in Denver just recruited a doctor from Cincinnati Children's. Cincinnati is known for their aero digestive clinic, and their expertise in cleft repair and airway reconstructive surgery. She wants us to see this specialist when he comes here and wants both him and our current ENT to work together to repair Henry.

The plan for now is to keep Henry on low dose steroids and to start SLOWLY feeing him some solids and keep giving liquids through the G-tube until the repair. So little Henry can have some birthday cake after all next week! I will put up some pictures of that for sure!!!

I cannot tell you, the relief I feel right now coupled with shear exhaustion. I am thankful that we only went home with the G-tube and not a trach! Which by the way, the pulmonary doctor said we do not need and WILL NOT need. I am so thankful that God has entrusted me with these beautiful children, all four of them. I am so thankful that He protected Henry and kept him from a repair, that had it occurred this week, most likely would have failed due to the swelling.

We now will have a chance to have a specialist from Cincinnati review his case, without us having to physically go to Cincinnati. For the past few weeks I have been thinking that I should just pack up and take Henry to the specialists in Cincinnati. Instead, God is bringing the specialists to us! I am thankful for the many people who prayed for Henry and for me. I cannot thank you enough.

We are home now and my heart is at peace. I am going to sleep now and Henry is too, most likely in my arms. I think I’ll hold on to him for a long time . . .