Tuesday 11 May Kyle Update

This was Kyle the day before his surgery, playing with his twin, Charlie. I added this photo because his coloring is so different. I thought I just had a white baby. It turns out even though he never turned blue his whiteness was actually a symptom of his heart failure.

Kyle as soon as we were able to see him, covered in so many tubes and wires.
The nurses snuggled him up with Charlie during the night.
And here he is this morning, as soon as they took him off the respirator. It had irritated his nose so bad it bled and is red and sore still. His poor little voice is rough and cracked and his lips are dry so I keep chap-stick on them.


This is Kyle after his second dosing of Morphine for the day. He is kept on a continuous drip of pain reliever but twice today he has woken up in pain and so they give him morphine to help. He's looked at me and has been obviously comforted by my presence. While they were getting it in him the first time he was inconsolable until I put my face within 3 inches of his, held his hand, and sang him his favorite song. He quieted right down until the morphine was able to take effect.

He will be allowed to drink a little enfamil from a bottle either today or tomorrow. We've just been waiting on him to wake up enough to try without being so mad because he is in pain. He is off the ventilator and tomorrow the rest of the tubes going directly into his veins and arteries will slowly come out one by one. He is hooked up to 5 different pumps and a bag of nutrition being dripped directly into his veins. Those will slowly go down as well. He keeps showing off by lifting his feet up to his mouth. He doesn't really suck on his pacifier but likes to hold it in his mouth.

His blood gas levels are perfect. I listened to his heart this morning when I came in and it sounds perfect. A nurse a couple of weeks ago taught me what his murmur sounds like. Once it was pointed out to me it was very obvious, a really loud "Whoosh" sound in between the "Thub-Dub" so it sounded like "thub-WHOOSH-dub". The Whoosh is completely gone and it sounds like a normal heart! The nurse told me today that it is very likely we can be discharged straight from the PICU without having to go back upstairs. I would LOVE it if that could happen. It is so much nicer down here. We have more room and a washer/dryer and fridge for our use.

I brought the financial counselor who has been helping us obtain AHCCCS paperwork in today and she told me that she has contacted management of our local office to find out why Kyle was not added. She's going to use his birth certificate we provided to get them to acknowledge he is a person. I'm so glad she is on top of it especially since it is taking her weeks to accomplish something that she does everyday within a matter of days. It is obviously past the point that I could handle it on my own.

I also have a photo of his heart from during the surgery that the nurse took per Nikolai's request. It is not gory, it is hard to tell even what it is without explanation. If anyone is interested send me an email and I'll send it to you.