Tuesday, June 17, 2014

Pulmonary Edema

Roscoe's roller-coaster continues today. After starting out okay and progressing down to 48% on his oxygen support, his heart rate and breathing rate have gone up dramatically. The doctors also discovered that he now has pulmonary edema (fluid retention in the lungs) due to the nitric oxide he is receiving. The nitric oxide loosens the vessels in his lungs, but that puts more pressure on his pulmonary vein stenosis (which causes the fluid to back up in the lungs). They plan to back off the nitric oxide as quickly as they can (safely) and give him a diuretic to get rid of fluid.

On top of these issues there appears to be a problem with the trach tube sizing (again) and they're wanting to  replace it and do another x-ray. I will be heading back to the hospital today so that we can make sure Roscoe doesn't get too much done to him in a short amount of time. We have discovered that parents need to defend the well-being of their child in times where hospital departments fail to properly communicate with eachother.

It looks like UCSF is also requesting that Roscoe return earlier than originally planned, so that they can do additional treatments for his pulmonary hypertension and possibly put in a stent for his pulmonary vein stenosis. I'll be at the hospital most likely all day today, so another update won't come out until tonight when we get home. We'll have alot more to update with tonight, based upon the findings and events from today.


  1. Our hearts and prayers are with you all! Thank you for being there to defend Roscoe's well being. I'm also thankful for your job that allows you to be there to care for him. Much love to you and Alisha and to precious Roscoe! I love you!

  2. I hate this.
    I am so sad that this all is happening, but trusting God and praying hard.

    Love you three!

  3. Our family prays for the three of you every day, throughout the day. Even though we don't know each other well, as family in Christ, we have wept with you, and we eagerly await your updates. May our Father continue to give you strength as you trust Him.

  4. We're praying for wisdom for you guys as.you advocate for him, and praying for the doctors and nurses that are making
    Decisions about his care. And as always, for the little man himself.

  5. I am thankful that you and Alisha don't hesitate to advocate for Roscoe. Continuing to pray for all 3 of you.
    Love you

  6. Your little guy really does have the best parents! Your hearts have to be so torn. He so much deserves a break and at the same time I know if everything could be done with no harm coming to Roscoe, you would have them do it ASAP. That is what makes you so wonderful. You are there and you don't hesitate to make the hard decisions with his best interest always in mind. Praying constantly!