Thursday, June 19, 2014

Comfortable Pin Cushion

Roscoe had a comfortable, stable night. He has been at 50-55% oxygen consistently and they haven't had any major episodes. Last night they started weaning the nitric oxide from 15ppm to 10ppm. Roscoe had an immediate negative reaction, with his oxygenation dropping very low despite being supplied 100% oxygen. The nurse said that typically, kids don't have that kind of reaction to nitric oxide weaning until it gets down below 5ppm, but as usual Roscoe isn't a typical kid. They put the levels back up to 15ppm and he returned to normal. This morning his heart rate was very relaxed in the mid-90's, right where it should be during a deep sleep. The nurse commented on how cute he was, which I'm sure is part of the standard reassure-the-parents-that-their-kid-is-special-and-not-like-everyone-else protocol. She said "he is going to break a lot of hearts when he is older".

Over the next few days, Roscoe will have some medical procedures done that require putting things into his body that shouldn't be there. Through the chaos and near fatal outcome last week, he received several needle marks. By "several" I mean that I counted 16 needle holes in his body, but I'm not sure I got all of them. When we arrived at UCSF I took some pictures to show the more painful side of having a son in the hospital:

Head: Two former IV sites in the top of his head

Head: Several attempts at a PICC line through a large vein

Left arm: A few marks from blood tests

Right arm: Current IV and other marks from blood tests

Left leg: Former IV site and marks from blood tests

Roscoe is a tough little man. We are proud of him for all the poking, prodding, and discomfort that he's able to endure, yet still smile and play like a normal baby would. We aren't sure how happy he'll be once we get him home with us, but we are pretty sure that nothing will be able to wipe the smile off of his face.


  1. Shine, Roscoe, Shine!!! Keep smiling little big man!!!
    You are loved greatly!!!

  2. "Owwwwwwwww" is all I have to say about that.

  3. I came across your story because it was posted on our MOPS FB page at our church. I've been praying for your sweet boy for about a week now, and so happy he is progressing!

  4. Makes me think how pins are used to help the crafting process along as something amazing is being created and will be cherished forever.

    Love you RoscoeMan,
    The babysitter with no baby! Waiting anxiously for your return :)

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  6. It is amazing how resilient babies are in situations like this, when adults would just not be doing so well. Praying Roscoe has a stable night and stays strong enough to do the needed procedures.

    P.S. I'm sorry to delete another post. My phone just can't spell!

  7. As Roscoe's biggest fan and nurse for the majority of his life thus far, I can honestly say, there is no standard-reassure-the-parents-there-kid-is-special-and-not-like-everyone-else protocol. :) If his nurse said that it's because it's true. We usually won't say anything if it isn't. That boy has stolen so many hearts over here, even nurses that have never had him would visit him during my shift and talk about what a cutie he was. Roscoe is truly special. I miss him and I'm sure he's in great hands. He's always in my prayers.