Saturday, July 19, 2014

Remodulin Ceiling

Roscoe's remodulin intake has been periodically increasing to ramp him up to the full dose. The problem with remodulin is that it depends on how the patient's veins respond, so the "full dose" is different for each person. The way they find the full dose is to keep gradually increasing the remodulin volume until negative effects are observed.

Remodulin expands the blood vessels, so negative effects are a headache, jaw pain, or other things that Roscoe can't communicate to us. Roscoe hit his full dose yesterday, because we could tell he was in pain when his heart rate went over 200 and his blood pressure stayed high even after multiple additional doses of pain killers and sedatives. Even with experiencing such pain, Roscoe never desaturated which is a great sign of his resiliency due to the stent. It was a stressful end to a moderately good day. Thankfully, now they will back off of the remodulin volumes to a comfortable level.

On the good side of things, we got to hold Roscoe again to comfort him. This time, I got to hold him standing upright. There were cords everywhere, but to me it just felt like me and Roscoe:

It reminded me (and maybe Roscoe as well) of how I used to bounce him to sleep each night when we were back at Kaiser. We fell into holding him like this because he wouldn't calm down and they were ready to give him a sedative. Thankfully, this showed that holding him can calm him down and avoid additional doses. Hopefully today will be a better day with Roscoe more comfortable, building up his strength for surgery on Monday.


  1. My day is not complete until I see a Roscoe post. Thank you

  2. I'm sure Roscoe remembers. Babies know just how they like to be held and mommas and daddies know just how to hold them. Be strong little Roscoe! Love you!

  3. So glad you got to hold him again!
    We're praying for you three! Love you!

  4. He's getting so big! May God bless Roscoe and all of you!

  5. It's beautiful to see you and Alisha get to interact that way with him.