Roller coasters

Ok- I get it now. Why they say it’s like a roller coaster – because when the downs come, they come fast.

When we last wrote, Benjamin was acting a little off (sleepy and less responsive) and they had found a fungal infection and started treating it. Also his blood pressure started dropping again so they needed to restart the dopamine. By the next day they started giving him a slew of antibiotics and a stronger anti-fungal medicine. They also ran a bunch of tests because his blood count had been low and his platelets had been low. They also redid a head ultrasound and found a grade 1 bleed in his brain. It is pretty mild and if it doesn’t grow it should not cause any problems, but it is pretty scary for us. They are going to check him out again in a month to see if it has changed.

By last night they had his blood pressure under control but his ventilator needs increased a lot. For a while they had him up to 100 breaths per minute (a few days ago we were bragging that they had him down to 18). Luckily he seemed to respond to that and they brought him down to 40 – pretty much where he started from when he got to NY.

The doctors seem to have everything under control, but it’s really scary for us. Hopefully everything was inter-related and he will bounce back quickly and  will be better when the infection is kicked.

Like they say – the only way out is through… keep our little guy in your thoughts.


16 thoughts on “Roller coasters

  1. Definitely keeping you all in my thoughts. Totally pulling for that little guy!!!

  2. I always keep him and you both in my thoughts….. Be strong sweet boy….

  3. You three are ALWAYS in my thoughts… as well as those of my staff… and family… and friends… 🙂

  4. I alm ALWAYS thinking of your baby boy as well as ya, and will continue to do so! Stay Strong just like ur baby Ben, ur precious boy! : )

  5. You are all in my thoughts and prayers – always. Thank you for the updates.

  6. I will definitely be thinking positive mojo thoughts about Benjamin and you parental types too… Here’s hoping you’re getting on one of those click-clacking conveyor belt lifter things on the roller-coaster, and that it just keeps going up.

  7. Benjamin is in all our thoughts and prayers. Keep your spirits up because he is a fighter and will surprise everyone with his fortitude. He is a beautiful little boy and with all the love that everyone is expressing for him, he will be sure to thrive and be well soon. Thank you so much for the updates. They help all of us stay in the loop.

  8. Thanks for the update. You’re all in my thoughts and prayers. Stay strong, guys.

  9. You are always in our thoughts and prayers. Benjamin is a fighter and he will get through this. Will say extra prayers and have positive thoughts. Love you Ben.

  10. You guys and the little man are constantly in our thoughts & prayers. Stay strong and sit back because no matter what, Benjamin is driving this bus. Jack would toy with his docs the same way. Just when they got comfortable he’d throw them a curveball.


  11. All in our prayers always. Keep looking upwards. Love

  12. Hey guys we are praying for you all everyday keep your chins up the little man is a trooper xxxxxxxxxxxxxxxxxxx

  13. Dear Amy, Joe, & Ben . . . The whole Civiletta clan is watching for Ben’s progress daily and praying for each of you even more frequently than that. Mom, Sara, Bill, and I are sending loads of positive vibes out into the universe. We hope they’re caught up by the wind and take seed. Immense love to you. If we could carry your burdon, we would.
    Hugs from way too far away. . .

  14. But I thought roller coasters were supposed to be fun! The ride down is scary but just think how beautiful it will be when you reach the top!

  15. Wow…I don’t check on here for a few days and this is what I come on to. I can only imagine what it’s like from your point of view. My thoughts and prayers are with you guys. Keeping fingers and toes crossed and hoping for the best.

  16. Amy, Joe & Ben –
    Our thoughts are with you all as you are going through these challenges. In the movie “Steel Magnolias,” Dolly Parton’s character comments that her friend’s family has gone through some very difficult times, which seemed to make them more aware of their love for each other. I always thought that was such a beautiful sentiment, because the difficult times definitely make me appreciate how lucky we are to have friends and family in our lives. Thanks for keeping us updated, and we really hope that Ben keeps improving!

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