You really have to carve out the entire day when you go to the Children's Hospital. Today was the first time that Avery went to Doernbecher's also. She was really quite good and glad she finally got to meet the mysterious Dr. Kelly.
Where are we today? Well, we are keeping the increased dose of Lasix - that threat on Tuesday was real and the dose adjustment was necessary. He does have mild congestive heart failure because he does have a failing heart, but none of that is new information. The status update today - Keane has been sick. You may be thinking, well, "duh" (which is, the word of the month learned at preschool, if you can consider "duh" a word). However, not ill and deteriorating quickly due to his heart. Really, he has just been sick. The same type of sick that kids with perfectly great hearts suffer from on a regular basis. Ha! That's what it's like to be the parents of a cardiac kid - you assume that all negative health symptoms are a sign of impending doom.
Here we were thinking that he is practically on death's door with a sudden increase of symptoms: congestion, increased trouble breathing, cough, fatigue, diarrhea, poor appetite and pale skin color . Granted, he probably doesn't handle routine viral infections as well as kids with properly functioning tickers, but it wasn't a mortal threat, this time. Many of the symptoms of a common upper respiratory infections are signs of poor heart functioning. There is enough overlap that I don't feel completely lame. However, Grammy and I both laughed out loud when Dr. Kelly said, "well, it appears Keane has been suffering from a... (pause)... cold." Then Avery said in the car, "you know, sometimes you can get sick without getting snot-tles." Isn't that the truth? Dr. Kelly did reinforce the baby bubble mentality and gave Avery some good pointers on how to love on her brother without exposing him to bugs that cause "snot-tles."
We did receive confirmation of a surgery date today. Keane will be having surgery on, or before, or sometime during the week that encompasses August 16th (aka practically the next millennium). Just this week there were three babies born at Doernbecher's that need more immediate repair, so we must channel our inner Zen and be flexible with the date. As long as Keane is stable and comfortable we've got a few more weeks to go before the next phase of life can commence - the post-open heart surgery phase.
