room 400

We feel like we’re in fast-forward …

Overall, Ruben is doing really well … but lordy. recovering from heart surgery is not easy.

Ruben was extubated yesterday evening, and remained extubated through the night (though on some extra breathing support – cpap, as you may recall). He was really uncomfortable with pain and hunger through the night …. didn’t get much sleep (Sam was here with him for the 2nd night in a row.)

This morning on rounds, despite some concerns about the depths of his breaths, he was taken off cpap and now has only a nasal cannula for breathing support (less support). They moved ahead with this so that he can eat (they couldn’t let him eat on cpap).

He is doing well on the nasal cannula – so a few minutes ago – he had a bottle! Now he’s sleeping ….

btw – we’re now in the same room that Ruben was in our first time in the PICU – only this time, Ruben is in the bed that his old friend Big Ruben was in in November (remember him? we miss him!). One of our roommates this time was a little 5 year old boy who was super unhappy. Last night he was really loud/uncomfortable (wailing) while Ruben was trying to get his breath, so eventually, the doctors actually moved the other boy. We hope his new spot is comfortable, and more importantly, that he’s feeling better. Now we have one roommate – a very sweet 14 year old boy recovering from brain surgery. He came out of surgery yesterday and might go home today! These kids are amazing.

here’s Ruben with his jackhammer earmuffs that we got him today (despite appearances, they seem comfortable)

and – though Ruben doesn’t need your peeing help this time, feel free to cough with gusto (if you need to) – his lungs are congested and his project now is to clear them out



15 thoughts on “room 400

  1. Ruben is always an inspiration (so are Sam and Maddy), so I will deeply inspire for him today. He is a breathtakingly (pun intended) wonderful baby!!

  2. a bottle sounds like a step in the right direction–as does getting some much deserved sleep. we’re holding him right here in our thoughts as he continues to make great strides towards recovery–love to him and you–ben/ari

  3. So sweetly sleeping wearing his ear protection : ) Wishing all of you peace and healing. Coughing and lung clearing is my specialty due to a weird form of asthma that I have (no wheezing, lots of lung clearing). I am so pleased that it has a useful and helpful purpose! I am delighted to BREATHE and CLEAR on Ruben’s behalf! Prayers for endurance and recovery, Valerie

  4. That is one of my all time favorite pictures….continue dreaming Ruben and have a peaceful night! Love, Nancy

  5. Woke this morning coughing mightily – so glad to know why! Also reporting a beautiful complete rainbow over the vineyards just after sunrise – certainly a good message of solidarity. Thank you for sharing with us and hoping that Ruben and all of you are in for better days and nights get back to bananas very soon. xxxxx J and P

  6. When I saw the picture today of Ruben, I knew for sure he was going to make it, and make it well. What a relief!
    Love, Elissa

  7. so much love for this little man. that pic belongs on the times square jumbotron outside my window. -adam

  8. SO glad to hear that things are progressing well!! We will be coughing with gusto and sending healing thoughts!! -Sarah and Tom

  9. picturing clear lungs for Ruben! yea for the big steps in the direction of home! his ear muffs reminded me of how when my brother was little, he called head phones ‘companions.’ hope ruben’s companions afford him some much-needed rest. Love to you all, Sarah & Felicia

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