Saturday, May 15, 2010

More than a hair cut

Thursday, May 13, 2010

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 . . .

Monday, May 10, 2010

Today's turn of events

I am still processing today. I've been up since 5:30 AM, praying and waiting for Henry's cleft repair to begin. It's something we've been anticipating for months. It did not happen today.

The ENT surgeon explained to us that when she put her instruments into his airway, it became acutely swollen, to the point that Henry would stop breathing. She backed out several times and then tried to go back in, but to not avail. It was not meant to be. I am thankful for many things. Thankful that the ENT surgeon had the wisdom not to precede. She said that with the swelling such as it was, the stitches would not have held. Further, she was more concerned that his airway was compromised and it would not have been safe for her to continue.

The surgeon was troubled and disappointed. I could see it in her eyes and hear it in her voice. "I fix things," she said, "I'm sorry I couldn't fix this today." There was a look of defeat about her. I could tell she was burdened and now after this; I feel I really know her, she really cares about Henry. That comforted me.

Strangely, I am not completely surprised at todays events. The past week leading up to the surgery, I have been concerned that something like this was going to happen. Henry has been coughing more and more and having these "spells" at home in which he chokes and turns pale and becomes limp. When the surgeon approached us, before she said a word, I knew something wasn't right, I could tell by the look on her face. She also said she found another defect below his cleft, an area near his trachea that seems to be misshaped. She said she needs to consult with pulmonary and perhaps do a CT scan to evaluate what this is. She thinks it may have something to do with his passing out "spells." She mentioned Henry might need a tracheostomy tube in the future. This too, is not completely unexpected, but it is not something I take lightly. It brings a deep sadness to me that we would even have to consider this, and I will only consider after carefully evaluating all our options.

Tomorrow we will consult with cardiology as well. The ENT surgeon thought she saw something irregular about his heart rhythm and wants to have the checked out. I imagine we might be in the hospital for another night.

For now we are waiting. This seems to be a common theme for me this past year. What is to be learned from waiting? I believe many things, much of which I can't quite process this late at night, but I think I will ponder in days to come. For now I am at peace, and tonight I will rest. I am not sure what tomorrow will bring. Tonight, I have my sweet Henry. He is sleeping quietly, and I can hear him breathing. He is breathing. Thank you Lord.

Yet those who wait for the LORD, Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.
Isaiah 40:31 (New American Standard Bible)

Sunday, May 9, 2010

A friend loves at all times . . .

A friend who loves you at all times, in spite of your shortcomings, is a rare treasure. I have such a person in my life. The other day, she came over and let me sleep before I worked my night shift. She has this special way of knowing what a person needs, without them having to say a word. When I got up from my nap she had cleaned and organized my entire house. The laundry was finished and folded. The toys put away. The kitchen cleaned. Lately, since the care of my son with tube feedings and medications is so time consuming; I have been overwhelmed with just the simple daily tasks. It was such a relief to wake up to a clean house. A huge weight was lifted off my shoulders.

This friend is such an industrious woman. I admire this about her and strive to show as much diligence. She is always busy: cleaning, helping, preparing. She has the gift of hospitality. From her, I've learned that hospitality is not just having a clean house, although she does. Hospitality is so much more; it's the way you feel when you are in her home- at rest. She has a way of making you feel you've come home, even if you are just over for lunch. You can sit down, forget your cares, and enjoy her company and of course the wonderful meal she's prepared. She's a great cook.

This friend has been there for me through everything; both good and bad. I can call her every day, and I do. She's probably the only person I could call at all hours of the night. I know she would come in an instant if I needed her. I can tell her anything, and she still loves me, even when I've wronged her. She loves me with an unconditional love; that though I try to return, I don't know that it will ever compare to what she's given to me.

This year with my son being sick, I have found myself in a state of need, unlike any I have experienced before. It is hard to admit that I am at a place where I have little to give in back return. Most days I am just trying to survive. To have the energy to stay awake, make the kids meals, and keep the house afloat. As a woman, it is often hard to allow others to help us. It is hard to admit you need help. She makes it easy, because I don’t have to say anything or even ask—she just steps up, and fills in. She has gone above and beyond to encourage me with cards and prayers. Her actions speak louder than words. She has cleaned my home, scrubbed my floors. She has taken care of my children and loves them as her own. She stayed at the hospital with my baby when I had a fever of 102 and I couldn't be with him. I don’t think I could have survived this year without her love and her support. She is my best friend, and I love her more than I can express. She is my mother. I am deeply blessed to know her and have her as my own. I hope I can be to my children, what she has been to me. I hope I can follow in her footsteps and be the friend to others that she is to me. I love you mom, Happy Mother’s Day.