Heart Cath

Feb 10

Heart cath early tomorrow morning. Please pray for no infection and for no funny business!

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Feb 11

Playing and waiting

Playing with Dave, our old profusionist from the ECMO days!

They just took Luke back to the cath lab. Whole thing will probably take a couple of hours.

The child life specialist just came by to get Luke started on the Beads of Courage program. For every procedure, surgery, medical test, needle stick, blood transfusion,and even wound dressing change, he gets a special bead. For some categories he will even get a bead that represents 100 of something. As David, mom and I sit here and count these things, I keep tearing up thinking about every challenge big and small that he has overcome. I am one proud Mamma, and I'm so grateful that this program exists to help us tell our story. We can't wait to show you Luke's beads!

Luke's heart cath is done. All of his pressures and measurements look great. Dr. Kort says that Luke is a great candidate for the Fontan (3rd heart surgery). He'll be going back to recovery and they'll be waking him up in about 15 minutes and we should see him soon after that. We will be here for another 6 hours or so, then the plan right now is to go home this evening.

Luke had a lot of trouble breathing as they were waking him up. They had to re-sedate him, and they're moving him over to the good ol Congenital Heart Surgery Unit to keep a very close eye on him while they wake him up slowly. Not sure if they will keep him overnight, we'll have to see how the next several hours go. 

We're staying in CHSU at least for the night.

We've moved from the OR waiting room to the Heart Unit waiting room. We got to see him briefly as they took him across the hall to the heart unit, but he was asleep. Can't wait to get back and see my little boy.

We're back in his room now, taking turns eating lunch. They will keep Luke intubated and asleep through the night, and they will try to extubate him first thing in the morning.

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Feb 12

We're about to attempt extubation. Prayers please!

Thank you for your prayers. Luke's breathing tube came out about as easily as could be. He is awake and watching Super Why, periodically mad at me for not letting him getting out of bed. We just started a tube feeding. Assuming he tolerates his feeding and we don't have any other surprises, we should be taking him home by the end of the day.

Beads of Courage for my Heart Hero.

We got home with Luke around 5:30. Gave him a bath, then put him in bed. He's asleep now. While he was awake and moving around, his breathing was really noisy, his sats were low and heart rate high. Now that he's resting his numbers are better. We're praying that infection stays away and we pass the next month peacefully until the Fontan.

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Feb 13

Luke had a pretty good night. Still not completely himself, but his breathing is much better this morning. I'm so relieved.

Anesthesia turns my sweet boy into a monster.

You'd think after so many times, Luke's hospitalizations wouldn't throw me into a tailspin...
      Not able to focus, be productive, or even be friendly. I just feel out of it.

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Feb 14

Best Valentine's Day Present ever: David says to me last night: "If I had any Beads of Courage, I would give you one for staying in the room while Luke was extubated yesterday. It was so hard, but you were so brave! You're a great mom!" 
That's all I need!