Wednesday, August 12, 2009

Rollercoaster

For starters let me just say that it was a really hard day. Though we’d been told that Samuel had been stable through the night it was evident to us when we walked in this morning that he had worsened. His heart and respiratory rates were up, and his oxygen saturation was down. Just looking at his heaving little chest made it clear that he was laboring.

From the beginning this made me nervous about him going in for the heart catheterization. He went in at 11am, and we didn’t get to see him until after 3pm. A couple of phone calls from the nurse in the in between time confirmed that his lungs were giving them trouble. He was breathing so hard over the ventilator that they gave him a paralytic in addition to the sedation and let the ventilator do all the work.

When we finally got to see him they were completing a switch from a conventional ventilator to an oscillator. An oscillator oxygenates his body with less stress on the lungs and essentially gives him internal respiratory therapy. Instead of full breaths it gives him rapid puffs; these pulses make his whole body shake. As long as he is on the oscillator they will have him on sedation, pain meds, and a paralytic. As you can imagine, it is very hard to see him this way. They hope to switch him back over to the ventilator tomorrow or Friday. Because of all of these complications, they never got to the bronchioscope. They plan to try it again when he is back on the vent, but they don’t have much hope that it will turn up anything helpful.

Before we got to see him we spent 30 minutes reviewing the images of the heart catheterization (i.e. angiogram) with the doctor who conducted the procedure. The results essentially confirmed what they suspected: there is definitely no clear surgical fix at this point, and they’re not sure that any surgery (i.e. closing the PDA, tying up the fistulae, or closing the ASD) would help and not further complicate things. Most disconcerting was the discussion of extreme options that we’d never heard or considered before: heart transplant or, worse yet, heart and lung transplant. These are last resorts with poor long-term prognoses. It sounds like infant heart transplant patients usually need a new heart within 5-10 years. Because of his lung troubles (i.e. pulmonary hypertension) he is currently ineligible for a heart transplant. In addition to the shortage of surgical options, there are very few medical means of help. This was all very discouraging.

The one step that they have taken as a result of today’s procedure is to give him nitric oxide (not to be confused with nitrous oxide, or laughing gas) through his tracheal tube to relax his lungs. The hope is that between the nitric oxide and the oscillator they will be able to reduce or alleviate the respiratory distress syndrome and especially the pulmonary hypertension. If he responds well, they will slowly wean him off the ventilator with the eventual goal of getting him to breathe on his own. Currently that seems so far away, but it was the most hopeful scenario we were presented today.

One change today was that the doctors were talking more like his lungs are the bigger issue. That is, he is currently so sick more because of pulmonary hypertension and respiratory distress syndrome than because of his heart/circulatory defects. They even seemed to suggest that they don’t think the heart issues are the primary cause of his lung disease. Because his liver seems to be doing better, if his lungs also strengthened, they could essentially isolate his heart problems and understand better the extent of his heart abnormalities (i.e. fistulae, PDA, potential coarctation, etc.). On one hand, the heart problems seem to be quite severe because the doctors are bringing up transplant as an option. On the other hand, an hour later one of the same doctors said that his heart issues probably weren’t so serious, and if we were able to get him off the ventilator, we may not even be in the ICU, but in the Step Down Unit. What a roller coaster! When these doctors (we really do love them and are very grateful for them!) get into information mode it is intense: part of me wants to intently listen, ask questions, and understand, another part of me feels like I am going to explode, and yet another part of me wants to pass out. It is overwhelming and exhausting.

Please continue to pray for Samuel and for us. Pray that his lungs would strengthen and heal, and that his heart would, in fact, be functional even with the myriad of defects. Over and over again today my mind and heart have turned to the truth that God’s grace is sufficient and that His power is made perfect in weakness. He is sustaining us.

20 comments:

  1. Hugs, hugs, hugs from us. I can so put myself right there with you and those feelings of wanting to listen, pass out, and explode all at the same time. Please God, let tomorrow be a better day.

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  2. Bryan & K. Thanks for taking the time to share these things. We cannot stop thinking about and praying for you. His life and times are in the hands of our loving heavenly Father. Loving you from Cumming. John & Debbie

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  3. Thank you for keeping us up to date. We are very heavy hearted but continue to pray for God's miracles. Scott and Melanie

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  4. Thanks for the updates... Amy and I (and the girls:-) remain in prayer. And we hope that the rollercoaster ride has ended for now. His Peace, Bryson

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  5. We are praying for you guys. Thank you so much for keeping us updated! We love you all!!

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  6. I'm so very sorry and sad for what Samuel, Kathryn and you had to endure today. I'm praying that tomorrow will be a better day. Lots of love, Jeanne

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  7. Praying for you guys throughout each day...I wish there was more I could do from Texas! Praying for sweet Samuel to be healed and get to play with his brothers. You are on my heart often. Thank you for the updates.

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  8. What a rollercoaster indeed! I sure understand your feelings and I am glad you can be honest about them. I have no doubt I would feel the same way. All the love I can send, I send to you all.

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  10. Bryan and Kathryn,
    We are praying for LIFE, for protection over Samuel's life. Our prayer is that his life would be sustained and healed by his Creator, and that as he grows, his heart would be strengthened both physically and spiritually. We wish we could be there to just throw our arms around you in love and encouragement. The Conleys

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  11. The Enrights will pray for complete healing of Samuel's heart and lungs and emotional strength for you and Kathryn. Imagine Jesus sitting next to you at all times...that's exactly where He is.

    Thank you for having so much courage to post and keep us up to date when I know it's not easy to go over and over it.

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  12. Bryan and Kathyrn - we love you guys so much. I don't know what we could possibly say to bring you comfort. But we know that the God of all comfort is loving and strong and good, especially today. We pray that He will act quickly on Samuel's behalf and heal him more completely that we could even imagine. "[God] reveals deep and mysterious things and knows what lies hidden in darkness, though he is surrounded by light." God, shine your light on this family!

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  13. We love Samuel, and we love you guys.

    "I wait on you, O Lord."

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  14. Bryan and K --
    We love you guys. We'll keep praying for all of you. I know this time is crazy and exceptionally tiring. Keep looking to God -- you've been great examples to all of us.

    Love Cliff

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  15. Sure wish this could all be over for you guys and sure it all feels like more than you can bear. We are praying that our heavenly Father would bear it for you and that you experience supernatural peace in this storm. Love you guys. S.

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  16. B & K, Continuing to pray for you and your precious family. Rest in the arms of Jesus today and let Him carry you through the day.

    Love you so much,
    Aunt Coleen

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  17. Oh, Lord, heal this baby through and through. Grant Kathryn and Bryan peace in the midst of the confusing storm that rages around them. We long to see You work, OH LORD. Hold us all close to You. Amen...
    And thank you, Kathryn and Bryan, for allowing me the joy of caring for your precious boys at home. They keep me focused on enjoying them while my heart and mind pray without ceasing. They bring me great joy. Love, mOm

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  18. Was praying for you alot last night (woke up twice thinking about you all) and now I see why. Will continue to pray for minute by minute strength, patience and peace. Doctors have a hard time knowing how to explain things when they don't have good answers- and the answers (as you have seen) keep changing. Will pray for wisdom and clear communication from all the medical staff to you two.

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  19. Wow, what a day yesterday.

    Dear Lord, please let Samuel's body be calmer today. Thank you for the improvement in his liver. We ask that his lungs will heal and be strong. We ask that his heart will work properly. We ask you to guide the doctors' and surgeons' thinking. Give them clarity and understanding of Samuel's unique body. Fill Bryan, Kathryn, and their boys with your peace in the meantime. Amen.

    Amen

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  20. "May your unfailing love by my comfort, according to your promise to your servant." Ps 119:76

    I'm praying for you guys and really believing for God to heal Samuel's heart and lungs! I love you so, so much!

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