Monday, June 23, 2014

Procedures Cancelled

The two procedures that Roscoe was scheduled to undergo today have been cancelled, due to Roscoe's instability. After I wrote the blog post last night, Roscoe had a big episode where had to be manually ventilated (ie: "bagged") and his oxygen saturation dropped into the 30's. As a result, the doctors increased his sedation and painkillers by 10% and put him back on a full 20ppm of nitric oxide. They did this because any time Roscoe wakes up now, his heart rate shoots up into the 170-180 range even if he visually looks calm. Last night we were reading a book to him shortly before the episode occurred:

Roscoe's stability was progressing nicely until roughly 2 days ago. After they put in the new PICC line, inserted an arterial line (to monitor blood pressure and make blood samples less intrusive), and started weaning him from nitric oxide his condition seemed to worsen. Now the doctors are trying to back-track to undo whatever happened to cause this degradation in his health. The pulmonary hypertension specialists were very disappointed to hear this, because they had hoped to do the cardiac catheterization today to narrow in on a long-term solution for Roscoe's issues. They want to perform the procedure when Roscoe is at his "baseline" (ie: normal behavior and stability) so today certainly isn't the day for that. Today Roscoe will regularly desaturate into the 80's when he get significant cares or if he wakes up too much. It is sad for us to look at his rolling eyes and see our little boy trapped inside this sedated body. We can tell that he hears us and that he wants to look around, but the sedation is restraining his curiosity. The spirit is willing, but the flesh is weak.

At this point they aren't sure whether the episodes are pulmonary hypertension or if they are a worsening of his chronic lung disease. They plan to take more measurements from blood samples to check how stressed his heart is, which will hopefully determine whether they should treat the pulmonary hypertension or the chronic lung disease. Both are inter-related, but the doctors are just trying to figure out which they will tackle as the primary issue that's hurting his health.

We will post updates as they occur later today. Right now the primary goal is to stabilize Roscoe back to the level he was at 2 days ago before this downturn began. For Alisha and I, it is very discomforting (downright scary) to see his numbers, sedation, and instability all coming back to the levels they were at two weekends ago when he nearly left us. There is even a plan for one dose of paralytics later today as they change his trach straps and re-set the arterial line. The paralytics bring back bad memories for me, so I am not looking forward to it.


  1. I'm SO sorry!!! We will be in prayer with you all day!! I love that he just there looking at your mouth while you read, though! Keep up the reading!

  2. Roscoe LOVES to hear his daddy and mommy read to him! Especially the Rhyme Bible when he loves to watch your mouth. He'll be talking before you know it! Thank you, Shaun and Alisha for being there to comfort him, advocate for him, and do all you can for him. Our prayers are with you and with the doctors to figure out how to undo what needs undone. God bless Roscoe!

  3. I check your blog several times a day as well as pray several times a day for all of you. I'm sad to hear that the Little Big Man has had more set backs. We will all keep praying for the three of you. Hugs and Love!! Moriah and the Herd

  4. We are praying!!!
    Love you three!

  5. I'm so sorry for all of you, especially sweet little Roscoe. This is disheartening news at best. I will keep praying and spreading the word for more prayers as the doctors work to figure things out.

  6. Thank you for sharing such a sweet video. Roscoe is so blessed to have you both as his parents who are able to be at his bedside constantly. I love you 3!

    1. I was thinking the SAME thing! Such a beautiful video. XO Praying!!

  7. Continuing prayers! Love you all three dearly!