Saturday, July 12, 2014

Discomfort and Rest

Yesterday Roscoe had quite a bit happen, so as a result he showed more discomfort than usual. He had his trach tube changed to be one size larger (3.0 to 3.5) to fix a small leak around the opening in his neck. He also had another perfusion scan, a lung echo, and had the dressing on his arterial line changed. When he was awake he was still consolable, which is better than before his stent.

However, the nurse said that overnight and then all through the day he was visibly more annoyed or discomforted than the prior 2 days since his stent was placed. Since he's a baby and can't communicate where he's experiencing pain or what is bothering him, the only solution to calm him down was sedation and pain medication. Sometimes we got him calmed without it, and sometimes he was too worked up to comfort.

On the good side of things, his blood samples are all still showing great numbers so he is still getting well oxygenated. One doctor was particularly excited that his BNP measurement (which is an indicator of stress on the walls of the heart) had come down from 580 when he arrived at UCSF to now a relatively normal 25. Roscoe's perfusion scan showed the blood distribution through his lungs at 60% (right) and 40% (left) which is completely normal. The doctor said that this indicates that the obstruction is effectively removed from his pulmonary veins. Prior to the stenting process the distribution was 70% (right) and 30% (left).

We took the following video during some of his calm awake time. His head was covered up with a sheet to reduce the amount of visual stimulation:


  1. You both are an AWESOME team! Love and miss you all.

  2. That is great Thank you. We are all still praying.

  3. Love you three!! So thankful for the good progress!

  4. It is great to be hearing this report of relatively good news. I'm sorry he has had some discomfort, but so grateful his blood work is showing so much improvement! Continuing to pray!

  5. Bless him, bless him, bless him! Hope Roscoe is much better today!