Monday, August 10, 2009

More Waiting

For the last several days we've been waiting for Monday evening. On Monday afternoons something like 14 cardiologists and 3 cardiac surgeons at Egleston get together for their weekly "Cath Conference" to discuss the difficult cases. Samuel did not quite make the cut last week, but he did this week.

First of all, this morning we got some mildly positive news. With the right meds the doctors think that they have reduced the pressure on the right side of his heart. This means that they are able to keep it from having to work so hard. Additionally, the PDA / ductus has continued to narrow a little bit. This is important both because it reduces the inefficient bloodflow (deoxygenated blood being pumped into the oxygenated bloodstream and down to the lower extremities) and because it allows doctors to see whether or not a coarctation (narrowing) of the aorta is forming there. From what they can see there is no coarctation. A potential ancillary benefit of this is that they would be willing to give him some breastmilk from the feeding tube in his nose once they remove the umbilical arterial line (UAC), and that could help his liver.

Unfortunately, the results of the "Cath Conference" were not so positive. Most of what we heard from our surgeon and pediatric cardiologist was not surprising to us, though it was disappointing. Some of the news pertained to painful, but real possibilities. In short, the conclusion of the doctors was that they need to wait and try to learn more because they still do not know enough to go in and do surgery. Our surgeon, about whose skill we consistently hear awesome things, said of Samuel's heart, "I've never seen anything like it." He says Samuel is certainly unique, "and that's never a good thing." They will do more echocardiograms (harmless and non-invasive ultrasounds) throughout the week and another heart catheterization (for which they will have to put Samuel under and put an arterial line through his groin) on Wednesday. The doctors acknowledged that they have narrowed the options, but he is a cause-and-effect mystery. As a result, our surgeon is not even sure that surgery would help Samuel. That was very hard to hear.

The hepatologist (liver specialist) believes that Samuel's liver troubles, which seem to continue to get slightly worse, are a result of the heart/circulatory abnormalities. The surgeon is not convinced. He wonders if there is a larger issue with the liver. Regarding the lungs, our surgeon and our pediatric cardiologist suspect that their struggles are a result of underdevelopment/premature birth and the heart issues. On the other hand, they acknowledge that not only are the lung's struggles greater than what they would expect, but they should be improving as he strengthens, and they are not. We are grateful for the surgeon's cautiousness. He acknowledges that if the liver and lungs were to get worse that we may be forced into surgery, but that apart from that scenario he does not want to operate unless he knows what we are really dealing with.

We also found out today that there is another set of fistulae from the left coronary artery into the left atrium. These are tiny, but they are many. They are inoperable. That said, the doctors are relatively unconcerned about those.

There are more details, but that is enough for now. Thank you all for your prayers and encouraging comments. K and I each check the blog multiple times a day and always tell each other when someone else is following the blog or posts a comment. PLEASE keep praying. We are heavy-hearted and sad. It is so hard to see our little guy on so many meds w/ so many wires (at least 11) and scary to think that there may be nothing the doctors can do. That said, we continue to trust our Lord and ask him to heal Samuel.

My consistent prayer:
- that we would be able to bring home a happy and healthy Samuel soon
- that Samuel would live a long and healthy life
- that the name of Jesus would be made great through this circumstance
- that God would do His work in us and through us

More specifically you can join us in praying for Wednesday's heart catheterization (i.e. Samuel's safety, good and clear pictures, conclusive information, doctors' wisdom), that Samuel's PDA would continue to close, and that his lungs and liver would improve. Thank you!!!!


  1. We hope that you can feel all our love, hope, and trust.

  2. Our hearts are heavy right along with yours. Prayers and love are with you.

  3. My heart aches for you ... We lift you up in prayer and will pray for Wednesday's test, clarity, and wisdom for the doctors. How blessed you are to KNOW beyond a shadow of a doubt, that God's plan is loving and He is in control. Waiting ... it's just plain hard! We love you guys and wish we were there to wrap our arms around you:o)

    Love You,
    Melissa & Mike

  4. Bryan and Kathryn- we too are heavy hearted for you today. We are praying without ceasing for God to heal Samuel and for you to be able to bring him home healthy. We love you guys.
    The Conleys

  5. I love you guys and little Samuel. I looked til late last night for news. I am so sorry it is all so wierd. I am with you in thoughts and spirit. Love to everyone.

  6. We are praying fervently for you guys, the whole family, and especially for precious Samuel. I am sorry the news yesterday was not so encouraging and I can only imagine how scary this all is. We will be lifting up those specific requests along with you! All my love, Mandie

  7. The Tate household has very heavy hearts today as well. We will continue to keep you guys in our prayers as we have been. Remember...our God is a mighty and good God and He can do the impossible! Love you guys and missing you!

  8. My heart hurts for you all, but you are loved and Samuel is so loved. We are praying for you and for sweet little Samuel. We will pray for the doctors and for Wednesday. Hugs from us.

  9. Praying intently for Samuel, for you, Bryan and Kathryn! Praying He will hide you in the shelter of His presence and constantly pour out His grace on all of you. I LOVE your blog. It is so clear that Christ has set up residence in that space around Samuel. Your hymns of praise and your prayers point to the power of our Living Christ--there with Samuel!!

  10. Bryan and Kathryn, I have been reading your blog everyday and I will be praying for Samuel and your family. I can't even begin to imagine how scary this is and my heart is very heavy for you. That said, I do have great hope in the Lord to give the doctors wisdom and heal sweet Samuel (I love his name by the way). Kathryn, what you shared about Caleb being sad the other night just broke my heart. What a sweetheart and good big brother he is. Love you all and praying for you throughout the day as you come to my mind, which is often.

    Sarah H. (Whoopsy Daisy)

  11. Bryan-Know that the Russells are all praying for your littlest guy. I was excited to see that Garrett & Caleb are classmates this year! Please let me know if I could ever help you out by picking him up and bringing him to school-I would be honored to assist your family in this way (or in any other way that's helpful!). I loved Kathryn's post on staying in the moment-such true words. You have an amazing wife!
    Jason and Allison

  12. Hi dear friends. I miss you so much. Last night in particular I was really missing you, Kat, and I stayed up late looking for a blog update. My heart just felt burdened for you guys last night, and then especially this morning after reading your post. This is so hard. I took Anna to the library this morning for story time (which was cancelled) and they were having a book sale. Guess what book I spied? Peace Like a River. It was $1, and I only had about 55 cents on me (this may be an unwise practice to go around town with so little!). I asked the salesperson if she would accept all the money I had on me, and she did. I left feeling good--like I was graciously given a little piece of my Kathryn to take home with me. I think I will always associate that book with you (Kathryn), Samuel, and grace now. Cool, no? I have been praying for you as much as possible, but it still hurts to be so far away and unable to do anything tangibly for you. Is there any way I can serve you? I did want to share two verses with you, that were extremely comforting to me during times of trouble. The first is Isaiah 8:13: "Do not fear anything except the Lord Almighty. He alone is the Holy One. If you fear Him, you need fear nothing else." The second one is Luke 1:37 (and elsewhere in the Bible): "For nothing is impossible with God" in reference to the virgin Mary bearing the world's Savior. I remember thinking that if anything were to be impossible, surely God becoming human and being born to a poor, young, virgin girl would be it. If God can do that (and more), he can certainly handle my problems. I know the doctors are stumped by Samuel's heart, but God designed it and crafted it Himself with great care. It is just as He intended it to be. He knows every nuance of Samuel's body and He loves those details. I don't understand why God (in His complete knowledge, wisdom and love) chose to design Samuel a unique, one-of-a-kind heart when He could have given him a run-of-the-mill one like the rest of us, but He did, and it is God's best for Samuel and your family. It is hard to write this, but it is true, so I write it. I love you guys dearly and it is so hard to see how you are hurting, but I praise God that He is being glorified through your faith in this situation. I came across your wedding bulletin last night as I was sorting through old letters and mementos. I thought I would remind you of one paragraph. "We want to thank God for this blessed day, and we desire for Him to be honored in all we do--both today and for the rest of our lives. We pray that all present would look through us and see our Lord and Savior, Jesus Christ. May everything be for God's glory and His glory alone." God is being honored through your trust and faith in Him, and He is glorified as people pray for your family and as we see His sustainment of your family. I will continue to pray that His grace would be sufficient for you, no matter the trial, and that you would experience great peace, joy, and rest in the arms of your loving Savior.

    Please let us know how Caleb's first day of preschool went. I prayed that he would have a good day, and feel included and liked, not feel pressure to perform well, etc. and that he would look forward to returning again. Also that Joel would enjoy his Gab'm time without Caleb and not miss him too much.

    Oodles of love...Ki & fam

  13. We are praying for Samuel and for your peace and strength during this time. We have shared Samuel's story with our family and friends and we have asked that they pray for Samuel as well, knowing how powerful pray is. We are here for you so please let us know if there is anything we can do to help make life a little easier. We love you guys! The Depp's

  14. Dear Kathryn and Bryan,
    You all are on our minds constantly. We have been following the updates and saying many prayers this past week. We love you all and will continue praying and specifically following your prayer request for the test tomorrow and for the doctors to get a clearer understanding afterward. Our love to you all! Love, Lisa, Chris and Bennett

  15. Our hearts are so heavy for all of you. You are constantly in our thoughts and prayers. We will continue to pray for God's peace, comfort and strenght to surround and uphold you - and for the doctors' wisdom in the days ahead. Love to all of you!

    -The Padillas

  16. May the Lord give you His peace,strength and courage through this difficult time. Praying for total healing for sweet Samuel. Love you guys!

  17. My heart is heavy as I read about all you and little Samuel are enduring right now. I love your family so much and I know that each time I pray for you, I join hundreds of others in the throne room of God interceding on your behalf. May God give you the strength you need for each new day.