Sunday, January 24th

Posted by Erin Wilson On Sunday, January 31, 2010 8 comments
On Saturday afternoon, January 23rd, I made a spur of the moment decision to take the girls home for the weekend so that we could be with Milo. I just felt like I didn't want to be away from him for the weekend and Josiah was fine, my parents were in Charleston so they could be at the hospital with Josiah. We had a fun evening together with friends on Saturday night and then got up in the morning and headed out for church. I spoke with Josiah's nurse right before the service started and she said he was doing great. He had slept through the night and he had no fever. It was really nice to worship with my husband. As the church was packing up after the service (we meet in an elementary school) I got a phone call from the hospital. I ran outside because my phone doesn't work well inside the school. I answered the phone and a nurse said to me, "Erin, Josiah is not doing well right now, he has coded and we are doing CPR on him now." I called out for someone to go get Milo. Then the nurse said to me, "Erin, you need to get here quick." That's when my heart started breaking and I had to tell her that I wasn't in Charleston but 4 hours away in Greer. I fell to the pavement and onto my knees and Milo came running. I was begging the nurse to stay on the phone with me but she said she was going to be more useful helping out than on the phone. I knew that was true, but I still did not want her to hang up. Milo and I held each other on the ground and begged God to bring Josiah back, not to take him this way, when we were so far away. I called the PCICU back after several minutes and this time spoke with Dr. Graham. He told me that they had been working on Josiah for about 30 minutes and he didn't think there was much hope. I begged him not to give up and he said he would do everything he could, then hung up. Milo and I got up off the ground and got some friends to take our girls home so that we could take off for Charleston. I think as we began driving we both knew that it was over, that Josiah was gone. I waited about 20 minutes before I called back and once again spoke with Dr. Graham. He so genuinely told me that he was very sorry but that they were unable to get Josiah back. It goes without saying but that was the most devastating news we could ever receive. Josiah was gone and we were not with him.

I don't think I even know how to describe my feelings at this point. They were feelings of incredible pain but there was a peace at the same time. Milo and I cried and drove and made phone calls and talked and cried and drove.

My mom held Josiah in her arms until we got there. At 4 o'clock Sunday afternoon I took my son into my arms for the first time with no tubes, wires or monitors. I held him for several hours while we said good-bye and as nurses and doctors came into say good-bye. We spoke with Dr. Graham who told us exactly what had happened. He told us that at one point they got Josiah's heart started again and thought they were over it. They were just about to call us and let us know he was doing better when his heart stopped again. Everything happened so fast with no warning signs. They gave him all the drugs they could possibly have given him and his heart would just not come back. Dr. Graham said that the only thing that he thinks could have caused this was that his BT shunt clotted off and did not allow blood to flow to his lungs. Josiah's BT shunt was a gortex tube that was placed during his first open heart surgery when he was 13 days old and it was the only way that blood flowed from his heart to his lungs. It is usually removed when children have their Glenn surgery because a new, more effective pathway is created at that point. That is the surgery that we had found out a week prior that Josiah couldn't have. This shunt clotting off has always been a risk. When it clotted off there was no blood flow to his lungs, which means no oxygenated blood to his body. Because of Josiah's low oxygen saturations to begin with he has a very low reserve and his heart immediately became over stressed. Dr. Graham said that a BT shunt clotting off is one of the very few things that can happen that they can't do anything about. The only way to fix it would be to take him to surgery or the cath lab to break up the clot, but obviously you can't do that while Josiah is coding.

Milo and I were very confident that day, as we are today, that the doctors and nurses did everything they could possibly do. Josiah received the best care he could and for that we are eternally grateful. We thank God that this happened while Josiah was in the PCICU because we don't have the "what if's" or the guilt of not being in the right place. This would have happened to us at home if we had been home. Even Dr. Graham said to us that he was now grateful for Josiah's fevers, which we were all so annoyed by, because it was the only reason he was keeping us in the PCICU. If this had happened at home there would be so many questions and so much guilt.

While, I'm not sure I'm grateful I wasn't there when Josiah passed I am very grateful Milo and I were together. This was only the 3rd Sunday in 6 months that Milo and I were together. I couldn't imagine this happening with Milo in Greer and me in Charleston.

At 7:30pm, Sunday, January 24th, Milo and I gave our sweet Josiah our final kisses and said our final good-byes. I couldn't walk out of that unit with out Milo holding me up. Again, no words to really describe what we were feeling at that point.

This post has taken me about 4 days to get through. I have so many other things that I want to write about but it's hard, the pain is real. I do believe that it's therapeutic for me to write, it's just more difficult than before. I want to keep blogging so please bear with me as I figure out how to do that now. I don't even know what to label my post any more.

-A heart that holds on

8 comments to Sunday, January 24th

  1. says:

    Anonymous I have no words for you as I can't imagine what you are going through, but I am praying for you.

  1. says:

    Stephanie Quintero Erin,
    Every time I try to respond to your blog, it just comes out in a knot. So, I can’t express myself like you can but please try to see past my poorly organized mess to what is really on my heart.
    Thank you so much for this post. PLEASE don't stop. It is undoubtedly tough but it is therapy for you and for all of us who loved Josiah so much. I have always enjoyed your blog so much. Quite honestly, I expected that you would stop blogging. I don’t know why I thought that. Probably, because I think I would have done so. At least, before I met your sweet baby boy and your wonderful family.
    From our baby Josiah and your wonderful family, I have learned that it is only the secular world that tells us that we can’t love people that we only know via blogs, twitter, and Facebook. It is God that tells us repeatedly to love your neighbor. Well who is my neighbor? It is most certainly your Brothers and Sisters in Christ Jesus.
    When you love someone from so far away, it feels as if there is no one to understand how much you loved person. To that no one who understands, you are mourning someone they never saw you know or have any contact. As if to imply that if you didn’t have the ‘normal’ relationship, then this family could not be a part of you and you had no relationship at all. I know that to imply this thinking is socially correct but makes no biblical sense at all. So, Josiah taught me to say I love you because every moment must count. I love you. Josiah taught me that! I love your family. I love your Son, our sweet baby Josiah, whom ‘God SAVES’.
    It helps me to know that you and Milo got to hold Josiah without any tubes, cables, monitors for the first time. My heart breaks with your hearts, yet holds on. I need to have my heart broken to know that the only time you heard Josiah's voice was his first cry when he was born. You see, I know now because of Josiah that the things that break your hearts break the heart of our Sovereign Lord. To know the things that break God’s heart, helps me to know, love, trust, and understand Him more. I am closer to God’s heart now. We have all said that Josiah’s life has changed many people’s lives and it will for generations. Well, Josiah’s life changed my life and my relationship with Jesus Christ every day and today has been no exception. I know Him and love Him more deeply because of Josiah and your family. To love one another we share their pain, love, trails, successes, failures, and heartbreaks. In doing so we are not only being good Christians but we are learning more about the heart of God. My relationship with God has deepened for knowing these intimate details that your family is willing to share with us.
    I was telling Melissa the other day, I miss when your blog rings to my phone and thinking that is my heart holding on or that is probably and reading all about his day. I have learned so much from Josiah and from your family about life, God, and what a family is supposed to be about. I have learned how God’s love can span anything; certainly distance is just a small part of that, and makes a family so much larger. I am praying for you is no longer just a sentiment but a commitment, an undertaking to feel, live, understand, rejoice, inquire and most whole heartedly grieve.
    Our time with Josiah was the miracle. His time with us, what he taught us, what Josiah brought to us, what he brought out in us is, simply stated, God's Grace. I cannot say that in an adequate way so just know that I tried my best. In your Son, God gave me what I did not deserve. Josiah is grace and the outstretched hand of God.
    This is very therapeutic for all who follow your blog and the tweets, retweets, and posts of CrossBridge Ministry. If you have more to say in the future, there are certainly those of us who want to hear it.
    Broken, broken hearted, and willing to listen

  1. says:

    Rene Oh my goodness, Erin. I wish I had words of comfort. I am glad Milo was with you. My husband wasn't with me when Tommy passed away. Blogging has been very theraputic for me. I hope it brings you peace and a way to deal with each day.


  1. says:

    Teresa I am a friend of the family of Baby Chase and have followed Josiah's story since last July. I received a text from his mom to pray when CPR was started and was saddened to hear that Josiah had passed, but knew he was finally pain free and healthy.
    Your family will be in my prayers as you adjust to a new normal once again. Josiah will always be with you and smiling down on you.
    As for the name of your posts, how about, Our Hearts, Holding On?

  1. says:

    Ginger Owens My prayers continue...

  1. says:

    BrianB. When Anna Grace was just days old and as I sat by her bedside the Lord just happened to have me finishing up 2 Chronicles. As I moved through the later chapters of the Chronicles while I sat over my little one in the PCICU, I remember reading about all the wicked kings who ruled in Jerusalem. One after the other they did “what was evil in the sight of the Lord.” Then out of no where I met Josiah.

    Josiah was unlike all the other kings. Even though no doubt he was influenced by a lot of what the other kings were influenced by, God protected little Josiah and had a purpose for him. As I read about Josiah and how “he did what was right in the eyes of the Lord, and walked in the ways of David his father; and he did not turn aside to the right hand or to the left”, and how he "while he was yet a boy, he began to seek the God of David his father", and when he was only 12 "began to purge Judah and Jerusalem" of their idols, I thought of your little boy. I remember thinking Josiah – know that’s a strong name given from on High. This no doubt is a boy who has touched many, many lives in a positive way similar to God using King Josiah to lead a nation back to repentance.

    May the ripple effects of God’s special gift to this earth in sending Josiah Wilson be felt far and wide and for many, many years to come. Thank you for being transparent and allowing people to see your pain and joy, and how these meet together at the cross of our Savior Jesus Christ.

    John 16:33 – (Jesus speaking) – “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

    The Bentley’s will continue to pray for your family and we will never forget your son Josiah. I look forward to meeting him soon in his wonderful glorified state and with our Master Jesus Christ. We beg you to come soon Lord…please come…

  1. says:

    Trish Geyling Dearest Erin and Milo,
    I know Rolf has been communicating with you on our behalf but I wanted you to know that we have been following Josiah's journey together and have been deeply moved and saddened by the events of this past week. Such a sudden loss is devastating and we share in your grief. In our journey with Rudy I've approached it with the perspective that I'm going to expect the best and plan for the worst as we've taken life one day (sometimes hour) at a time but the reality is, I imagine, that no matter how hard one in our situation trys to "prepare" for all the various scenarios at each setback or crossroads, we simply can't. We must take the journey as it comes and you and Milo certainly embraced this road with Josiah...forging ahead no matter how confusing or fearful the steps were to take. You have been honest, full of worship and full of grace in the midst of a full range of human emotions and responses...and my guess is that trend will continue as you navigate through your deep grief. Know that you have an HLHS family in California that loves you, is inspired by Josiah's life and will continue to support you in prayer. Bless you dear ones and your precious girls...Trish (Rudy's mom)

  1. says:

    Anonymous Erin, thank you for your honesty in your posts. I know you might not feel like it right now but ever since I started following Josiah's story you have always sounded so much wiser than anyone I know!! On the one hand it is always a heart parent's nightmare to think they might not be there when/if their child passes away. But on the other hand, there is a reason for everything. God was looking out for all of your best interests even if we don't fully know each and every reason why. I'm sure Josiah would've wanted his parents to be together when it was his time to be at peace after his long journey. Please know that neither God nor Josiah wish you to feel any guilt over not being there. We have faith that it was meant to happen that way. My prayers for you, your husband, and girls! Margaret (your Zorphie Zorro friend on facebook). Kieran's (HLHS) mom

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