Tuesday, June 28, 2011


It was a really big battle, but I just got Luke to fall asleep with his PMV/cap hybrid on. All his crying broke my heart, but with some Mamma love, he finally dropped off. Satting 80%. This is a big step for him, and gives us confidence that maybe he can pass his sleep study next Friday.

Monday, June 20, 2011


approx 3:35 pm

Luke is awake, playing and doing well. They decided to keep him overnight after all just to be safe. We'll go home first thing in the morning.

approx 12:45 pm

Luke's out of surgery. Doc removed more granulation tissue. There is some scarring on the vocal chords, but it shouldn't hold us back from decanulation July 18.

approx 11:45 am

Just took Luke back to the OR

approx 10:45 am

Waiting to send Luke back to the OR for his 9th broncoscopy

Friday, June 10, 2011


Not bragging or anything...well, I guess I'm bragging... Luke's been wearing his cap for 30 minutes so far, with brief pauses for suctioning and we've gotten it right back on. We're going to see how long he can go. We are SO EXCITED!

Thursday, June 9, 2011



Wednesday Night

Over the past two years, I have become impervious to manipulation by Luke's voiceless cry. Of course I would never ignore him if something is wrong. But now that Luke has a voice, approaching the true sound of that a normal child makes, my heart melts every time that little boy utters a sound. When he cries, I want to cry, laugh, and cheer all at the same time. I'm afraid I'll never say no to him again!

Wednesday, June 8, 2011


We are now able to use Luke's speaking valve again, and it's amazing to hear his voice after not hearing it for so long. He's doing great! Thank you for your prayers. Now we need you all to pray that he will tolerate us capping his trach tomorrow.

Monday, June 6, 2011


{approx 7:30 pm}

Waiting on a last dose of IV steroids at 8:00 before we can get home. Then, we'll all be sleeping in our own beds, praise God!

{approx 3 pm}

Luke is awake and doing well. Cries every time he coughs because his throat hurts. Poor guy. :( Plan is to go home this evening around 6 or 7 if we don't encounter any problems between here and there.

{approx 11 am}

Luke's out of surgery. Did great. Sats and heart rate are acceptable. Doc removed granulation tissue. Probably staying overnight.

{approx 9 am}

They took Luke back to the OR at 9:00. Should be about an hour and a half. He'll recover in the cardiac ICU. Don't know if we'll stay overnight or not.