Tuesday, July 1, 2014

New Plan: Stent then possible Surgery

We spoke with Dr Fineman this morning and then Dr. Moore before we left tonight. The discussion with Dr. Cohen and the other surgeons came to the consensus that surgery at this point would be too risky to warrant the possible benefit. They said that it would be a "highly risky" surgery and at this point they're not sure what good it would do for Roscoe. Remember that Roscoe has two major problems:
  1. Chronic Lung Disease (causes hypertension in the pulmonary artery)
  2. Pulmonary Vein Stenosis (causes hypertension in the pulmonary veins)
If the surgery was completely successful and no scarring ever occurred, it would resolve issue #2, but his chronic lung disease (issue #1) would still remain. Since both issues currently co-exist, the doctors aren't sure which issue is the bigger factor in his breathing problems. Chronic Lung Disease as bad as Roscoe's normally takes 2-8 years to fully outgrow, but his pulmonary vein stenosis will not allow him to live that long if it's not dealt with.

The plan they came up with was for Dr. Moore perform another cardiac catheterization where he will insert a stent into at least one (and both, if possible) pulmonary veins. The stent will provide a temporary resolution of issue #2 for at least a few weeks. During those few weeks, they will hand off to Dr. Fineman who will aggressively treat Roscoe's chronic lung disease (issue #1) with medications like sildenafil, bosentan, and remodulin. The effectiveness of these treatments during the trial period (2-3 weeks) would indicate if any progress can be made on Roscoe's chronic lung disease. If no progress can be made on Roscoe's chronic lung disease, then he would be presumably transferred back to Kaiser where he'd spend the remainder of his time on earth. If progress can be made, then Roscoe would be more stable for surgery and it would indicate that surgery would benefit him long-term. In that case, surgery would occur (and hopefully be successful) after the 2-3 week trial period.

Here's a very rough timeline of how things will tentatively occur. I made up the dates according to the rough estimates of days and weeks from the doctors:
July 1 - Today, the plan is made. Dr. Moore goes on vacation.
July 7 - Dr. Moore performs cardiac catheterization, inserts stent(s)
July 8-9 - Roscoe recovers from catheterization
July 10 - Dr. Fineman begins aggressive medicinal treatments
July 17 - Roscoe's medicinal treatments reach full capacity
July 24-31 - Results are observed from Roscoe's aggressive treatments
August 1 - Dr. Cohen's team performs surgery to repair pulmonary veins (if treatments worked) or Roscoe returns to Kaiser (if treatments had no effect)
 As always, we'll keep you updated as this "plan" unfolds:

"Commit your work to the Lord,
and your plans will be established" - Proverbs 16:3

"The heart of a man plans his way,
but the Lord establishes his steps" - Proverbs 16:9


  1. Thanking God that he is allowing Roscoe's lungs more time to heal and praying that it will lead to a very healthy little boy! Love you all

  2. Sounds good! Please keep playing the music for him : )
    We all love him so.
    We all love you and Alisha, too!
    Thank you God for another chance.

  3. PRAYING!!!!!! Love you three!!!

  4. It is great to know they are planning to forge ahead. It sounds like a good plan and I will pray it is successful.

    I was so glad to find this update before I went to bed. Thank you so much for the time tout spend doing all of these updates!

  5. Praying!!! Glad there is a 3rd option...Praying as always for you 3 and all the doctors and everyone involved!!

  6. Thank you, God, for hearing our prayers. Your will be done.

    This plan sounds very full of possibilities...I like that! We will be praying for the stent(s) and drugs to be effective and to allow Roscoe to grow stronger and for (later) a successful surgery.

    Love you three!

  7. Will be praying for Roscoe's stents and meds. Y'all're doing a great job of hanging in there...hugs for all of you!

  8. S & A - God answered my prayers for open doors that we could not see, wisdom and courage. We often translate any positive solution as a miracle. Whether that's an accurate definition of a miracle or not, we are acknowledging God did what we could not. For Him, we are thankful and boldly ask for more! We love you three. Shaun, thank you for so generously sharing your skillful writing with us. You bring comfort to those who want to give comfort!

  9. We are earnestly praying for Roscoe, you and Alisha, and all who have grown to love him. Thank you for the updates during this extremely difficult time.

  10. I continue to pray for you all. I encourage you to listen to Steven Curtis Chapman's song - The Glorious Unfolding. I am reminded of your struggles and am encouraged and reminded that God is working and this will be a glorious unfolding of His work in Roscoe's young life and yours!