Wednesday, August 19, 2009

A Couple Requests and an Answer

We had to step out of the CICU for about an hour today for a new patient to come in from the O.R. When we got back, we found out about a new issue. All of a sudden brown liquid was coming out of the suction tube that goes through Samuel’s left nostril and into his stomach. This was indicative of bleeding in his stomach. They immediately stopped the breast milk that he was getting (which was actually fed past his stomach directly into his small intestines) and ordered an x-ray of his stomach. The x-ray results did not show anything concerning, but the brown fluid continued to drain out for the rest of the day. Though we never heard from the doctors on it, our nurse was fairly concerned about this. One more thing to be concerned about. One more thing to pray for.

The bronchoscopy did not happen today, but Samuel is on the top of the list for tomorrow morning – 8am or 10am. Again, please pray that he tolerates the procedure well and that they are able to open up his lungs. That would be awesome!!

The biggest news of the afternoon was that Dr. Kim (one of the CICU cardiologists) heard back from his colleagues at Children’s Boston and spent some time on the phone discussing Samuel with them. They, too, find him to be a very unusual case. They seem to agree with the diagnosis and treatment decided by the doctors here at Egleston. This, too, is an answer to prayer. They concur that Samuel has lung issues beyond those caused by his heart defects. They, also, concluded that the anomaly on the angiogram (i.e. heart catheterization images) is most likely a hemangioma, and that ligating (i.e. tying off) the PDA would most likely help reduce the mucus in his lungs and keep them open. The doctors at Children’s Boston did suggest an MRI to get a better look at a) the hemangioma, and b) the PDA and potential coarctation of the aorta. Our doctors had considered this for the hemangioma (before the PDA ligation was part of the plan), but at the time they didn’t think that they would do anything with the results. The doctors in Boston also mentioned that some doctors are using beta blockers to treat hemangioma that do not go away on their own, but they don’t know if it would work for a heart hemangioma.

In summary, here are the ideal next steps from the perspective of the doctors:
- Bronchoscopy to clear up and open his lungs
- MRI to give better pictures of the hemangioma, PDA, and possible coarctation
- Surgery to tie off the PDA
- ???

Please keep praying that God would heal our Samuel. We so desperately want to bring him home.


  1. 9 You gave abundant showers, O God;
    you refreshed your weary inheritance.

    10 Your people settled in it,
    and from your bounty, O God, you provided for the poor.
    Ps 68:9-10

    Settle in his abundant showers. I know you guys are weary. Let Him rain on you and refresh you. I am praying for you.

  2. Praying for a miracle, and thankful for the miracle of your faith and courage in the midst of this storm.

  3. We are praying for all of you, for all of the specific items you have asked for, for strength and encouragement, and just praying that God will meet your needs that we don't even know how to ask him for. We love you guys and are continually lifting you up.

  4. You are in our thoughts and prayers. Your updates are so informative and your abundant love is very clear. Samuel is a beautiful baby - we pray for his strength and healing and for him to go home to be with his special family! With love, Vicki, Tim, Sky & Savanna

  5. Because each of us needs God's strength to get through each day...

  6. Joining in the prayers for you all. Thank you for enabling us to walk with you through your sharing. We prayed for baby Samuel at Sarah and Jeremy Sanderson's church in NJ last Sunday. - Rebecca Heidkamp