Out and about (yesterday afternoon)

Practically live... echo still in progress

Keane is currently getting his post-op echo. He's still pretty drugged from his morphine bolus prior to chest tube removal. We were playing Pandora in the background, completely randomly, and listen to the song that came on the radio....! Hmmm, after further review, the radio seems inaudible, so I will just tell you that it was his theme song :)

No tubes, home tomorrow maybe, is this a joke?

Apparently, if all goes well tonight, we may go home tomorrow - to Grammy's and Poppy's house in Portland. Yes, we were wondering if this was a joke.... echo this afternoon to confirm repair is holding and no leaks are present. All tubes are out. He's not even wearing a heart monitor, only a blood oxygen saturation monitor (pulse - ox). Here he is drugged up on morphine for his tube and pacemaker wire removal...!

See....

Couple steps back - one giant leap forward

Last night was a little challenging. Keane ate a little too much breastfeeding then gagged on his oral Tylenol, resulting in projectile vomiting. I am pretty sure he will never take oral Tylenol again. After two back to back episodes of illness, we did some smaller feeds overnight. He also was sweating profusely, soaking through sheets and clothes. The sweat was most likely a result of his increased doses of diuretics.

Keane slept pretty well overnight, no whimpering or fussing. I wouldn't say he woke up happy, but he didn't wake up sad. He wasn't offering any typical morning smiles; however, he did play with some of his toys and grad Dad's face a bunch.

He is currently on ROOM air! I know, what a crazy improvement in such a short period of time. His oxygen was weaned off last night and he went on to room air this morning at about 800a. He was initially reading about 95% on room air and now is at 99%. If he maintains, he will be able to have his nasal cannula removed today, which will make a big difference in his nursing. Finally, his chest tube output was really low last night, so crossing our fingers he can have his chest tube removed also....

FYI - since we are on the floor, we now have cell service....

Very busy day

It has been very busy since our last post - no time to be on the computer today! Last night was pretty rough. Mom was up with Keane until 330a, then slept from 330a until 445a, then called Dad in from Grammy's and Poppy's house for relief. Keane's vital signs were mostly strong and stable, but he was having some pain control issues and reacting to being overall more aware of his situation. However, great things happened mid-morning:

• Central line removed from his neck
• Left chest tube removed (only right side left)
• Breast-fed with Mom
• Finally went "#2" 
• More alert overall AND
• .... left the ICU! 

We are now on the floor - 9 South. Moments ago, he had his feeding tube removed. He is on a limited flow of oxygen, hoping to transition to room air tomorrow-ish. If this keeps up, we could be discharged by the end of the week!

Last chest tube may come out tomorrow... 

Surrendering - Feeding tube it is

Due to Keane's difficulty breathing today, he did get a NJ tube - a feeding tube. I am now pumping, then he is getting a continuous infusion of breast milk directly into his tummy. He is much more peaceful and happy. Although we  tried so long to make sure he wouldn't have to have a feeding tube before surgery, the best possible case scenario was to waive the white flag. Feeding tube it is. He can go to the floor when his heart and lungs are stable. The two remaining chest tubes and NJ tube are not a limiting factor in leaving the ICU. Hopefully tomorrow....?!?

Doc McAvery

Some of you are probably familiar with the Disney Jr show, Doc McStuffins. It is one of Avery's favorite shows. Here's her version of the theme song...!

Home sweet home - in a swing

Snack time

Middle chest tube removed (mediastinal). No episodes of concern since this morning. It's snack time! "Finally, Mom and Dad let me watch cartoons and eat in front of the TV...."