Wednesday, June 18, 2014

Tentative UCSF Plan

Roscoe has stabilized well at UCSF, most likely due to getting rid of all of the excess fluid that was weighing down his lungs (pulmonary edema). When he left Kaiser he had lots of fluid built up, so he was struggling to maintain his oxygen saturation at 65%. Now that his waist size has decreased from 40cm to around 34cm (almost back to normal), he is stable on around 55% oxygen. He is back to a good combination of sleeping and awake time. He even made a new friend who photo-bombed the picture below. It's a little yellow duckie with a pacifier on the end, just like the monkey pacifier he received on his first visit:

The immediate plan for Roscoe is for UCSF to complete their analysis of his current situation. The nurse flipped through his medical record and showed us that it is currently 255 pages long. It was difficult for UCSF to comb through all of that data in a short amount of time, so they supplemented the summary information from Kaiser with anecdotal information from us about his recent developments and past history. It was a little weird to stand in a group of 5-7 doctors and have them ask you a medical question other than "So where does it hurt?". I am thankful that we've been keeping this blog, because in writing things out they stick in my memory a little better, and because of that I think we were able to guide Roscoe's care along the same course that had been set out at Kaiser.

With a big change of management from Kaiser to UCSF, there's a tendency for opinions to creep in as unnecessary changes to his medical care (due to lack of communication or unfamiliarity with his complete situation). For instance, in the meeting with the neo-natal doctors I was thankfully able to explain that his recent bout with pulmonary edema was due to his pulmonary vein stenosis, so it wouldn't be a good idea to raise his nitric oxide levels back up to 20 (currently 15). If we hadn't been keeping this blog, then I don't think I would have been able to explain it and Roscoe may have suffered.

The plans over the next few days are to wean his nitric oxide levels down gradually as long as he remains stable. The nitric oxide helped him get through the rough period when he was nearly killed by a common cold, but right now it will cause more harm than good. Roscoe just got a heart echo (ultrasound) done to look at the current state of his heart. They also plan to replace his trach tube tomorrow (it was due for replacement on Thursday) and possibly perform a bronchoscopy (a camera inspection of his airways) to check for damage or malformation.

The pulmonary hypertension experts at UCSF still need to gather and discuss the plan for his cardiac catheterization. They estimate that it will occur sometime later this week or early next week, depending on when there is an opening in the schedule. We hope to speak with the pulmonary hypertension team about their plans, probably tomorrow. Once we have more information, we'll keep everyone updated about any revelations or setbacks in Roscoe's healing.

I know I've spewed lots of information out in this post, but stepping back it's important to remember that we are here because of prayer. Had Roscoe gone home in April, or had his cold been caught a bit later, or had he not had the trach tube placement not gone well, Roscoe might not be with us. We are sincerely thankful to everyone for taking time from your lives to care about someone else and strive with them in prayer. I think that it is fitting that Paul wrote:

"I urge you, brothers and sisters, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me."
- Romans 15:30


  1. Praying, praying, PRAYING!!!!

  2. As Roscoe grows he will hear the story of his start in life so often that he will sound medically wise beyond his years. When he is 19 and you hear him explain it to someone it will amaze you to hear the details and accuracy with which it is told. He is so blessed to have you and Alisha right there guiding his care.Love you all and he looks wonderful!

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    1. I'm glad you have this blog to look back to for answers, even if that wasn't your original reason for starting it. You have done a great job keeping Roscoe's story documented! Always praying

  4. Oh, how I love, love, love that boy!!!

  5. So glad the doctors listened and asked YOU questions. And the blog is helping so many people in so many ways. Hope and prayers!

  6. Continuing to pray fervently for Roscoe and Alisha and you! I am so impressed with your commitment and involvement in Roscoe's health details. God knew what he was doing when he made you both Roscoe's parents!

  7. "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23 Thankful for a new morning, a new day, progress, faithful, loving parents of Roscoe, good doctors, hope! Praying without ceasing for all of you! Love and [[hugs]] sent to you three!!

  8. My prayers are with your family that Roscoe continue to be stable! I appreciate the time you put into the blog and must tell you this little boy has captured my heart!