The knot

We finally made it out of the intensive care unit at UNC to a regular room on the children’s ward. The experiences Jack & our family has gone through the last few days/months has been unimaginable. The medication the ER staff administered at both Richmond & UNC called Haldol caused Jack to have an adverse reaction. The reaction is called Neuroleptic Syndrome that causes severe muscle rigidity, body contorting, mouth & jaw not being able to close, swelling of the tongue, eye deviations, & fever. His body was in the shape of an S & couldn’t turn his head. It was like Jack was in a constant seizure. This reaction started on Friday evening & into early Sunday morning. The peak of the pain from this condition was Saturday night, Jack cried out for hours, there was nothing that could be done for him to lessen the pain, he had to wait it out until the medication moved out of his system. We went from one torturous event to another, first the aggression, then the horrible side effects.

Upon awakening at 5am Sunday morning, Jack was much improved-no more body contortion. Now we are out of the ICU & in a regular floor children’s room. We are still left with the dilemma of what to do with Jack. The psychiatric team was not on duty for the weekend. I mean really? Don’t people need mental health care on the the weekends too? Mental health needs are not a Monday-Friday only illness!

I know I talk a lot about how I feel, I can only imagine how Coleman & Ava must feel. Ava is a nervous wreck & shows it but Coleman not so much. Coleman helped us so much the night Jack went off. He called 911, followed us to the hospital, helped restrain Jack in the ER when needed. He finally left the hospital when UNC arrived to pick Jack up around 1:30am & spent the night at my parents. During this time, Coleman learned that night of the ordeal he had been accepted to UNCW. What a heartbreak he must of felt that this occasion could not of been congratulated properly by the two people that love him the most. He is also working on finals, is the sound guy for our church, & became the head of The Berry Patch overnight. Lee & I had to miss our church cantata for the first time ever which meant we missed Coleman’s hard work. Ava is still a little girl at 12 years old. You can hear her heartbreak when things become troublesome in our home. Her cries shatter our hearts. I can understand her fears & Coleman’s silent fears too & it puts me in a knot to think of what they must struggle with inside. The endless amounts of time we have been separated because of hospital stays with Jack are hard on us, it’s especially hard on them.

I titled this blog “the knot” because we have many knots in our family. The knot in the pit of my stomach not knowing what will become of Jack’s situation, the knot in my heart that our family may not be the same dynamic any more, the knot in mine & Lee’s neck & shoulders from these terrible sleep conditions, & the big ole knot in my hair from not having proper hair materials while staying in the hospital. Our knots are plentiful it seems. We all have knots in our lives whether big or small, not sure why our family seems to have so many. We are trying to have faith that we can one day understand why we have gone through the trials we have faced.

We still need prayer. Please pray specifically that we will be guided in the right direction with Jack’s situation. That the team of doctors will devise a plan that we can feel comfortable with, that we will all be safe, pray for Jack to be able to calm down & never be violent again. Pray that our knots will straighten & we can provide a safe, loving home for all of our children. Thank you all for your encouragement, your faith, your prayers, messages, texts, & special deliveries. Will keep you posted!

Author: dravetsyndromeblog

42 year old Mama of three kids, wife of a farmer, & business owner.

16 thoughts on “The knot”

  1. My heart brakes for you all. I pray that all involved are guided in the right direction for Jack’s care and that you all find peace, understanding and balance.

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  2. My heart is hurting for all of you. Please tell Ava I love her. I am willing to help in any way with the kids. Congratulations to Coleman! He’s such a good kid! I’m praying for strength for you and Lee! Love y’all!

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  3. Amy praying for you all love ❤️ hope the Drs. Comes up with something for Jack all youall if there is anything we can do call or text the Knox will soon be removed. Keep the faith God is on the thrown

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  4. Amy we are praying for all of your family and also the doctors that are treating jack. If there is anything I can do for y’all please just let me know. I know your aunt sue and I prayed for jack together. Love you!

    Liked by 1 person

  5. Praying so hard for all of you. If there is anything any of you need please please let me know. I come to Raleigh on Fridays most weeks and stay through the weekend so if you need me to bring you anything or do anything while I am there or here it would be a blessing to me to be able to help.

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  6. We serve an ok awesome and mighty God! A God of peace and of mercy and a God of power and healing. My prayer is that God will hold your hand and take you all gracefully and mercifully through these turbulent waters. I cannot imagine your thoughts, feelings and your heart! Our children are our greatest, most precious gifts and as moms and dads we would only have the very best of health and life for them. You have 3 precious babies. I pray for Jack’s situation and for God’s greatest guidance in the days ahead. I also pray for Ava and Coleman as they experience these trying moments and as they watch their brother endure so much! I pray God’s hedge of protection around them both….I pray God will protect their mind and their heart as I know trying to understand it all is difficult and heartbreaking at the same time. I pray for You and Lee…..wow……I know your heart breaks to see your baby, God’s creation of your flesh, hurt and endure so much! I pray God will strengthen you both, filling you with a peace and understanding that can come from none other than Him! You and Lee have an awesome, beautiful family and I am trusting in God that He is going to do great and mighty things through this situation! Our love to all of you❤️

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  7. Amy and Lee, You are very special people to a lot of people and especially to your family. i pray first for Jack that the Lord will work a miracle in his life so that he does not get aggressive or sieze any more. We know that God is able if it’s His will. I pray for strength, rest, and understanding and most of all guidance from God about what to do for you and Lee. I’m very proud of Coleman and how mature he is and Ava in all that she does. You are wonderful parents to all your children and great friends to all. Randy and I would be glad to help you all in any way we can; we could even work at the Berry Patch if needed. Just know that lots of people love you all and are praying for you.

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  8. Amy, I read your blogs and just cry. I have no idea what ya’ll face daily. I would help you in anyway I could, if possible. I have prayed for you all and will continue to do so. Please know you stay in our hearts and minds. Much love to you and Lee and your precious children!

    Liked by 1 person

  9. No one knows the struggle unless we walk in the shoes of the person or family. So sorry for what you are dealing with and your family. Jack was a gift you were given because God knew you could be strong enough and could be a voice for others who deal with mental illness of all types.
    We do not have help that is needed for mental illness in NC
    I pray that God gives you comfort and peace for the decisions that must be made. Peace for your family. Hope in the future. May God bless you all.

    Liked by 1 person

  10. I’m just reading your update. Oh, Amy I can hardly type with the tears in my eyes. Your family, each and everyone are being prayed for and praying for God’s mighty hand to direct the physicians involved with the plan for Jack going forward. You have raised very strong children and Coleman and Ava just love their brother. They will be strong for him and y’all. Coleman has always had a helping hand kindness in my opinion (so it feels natural to him) to assist his parents and siblings. Ava has a heart of gold and you and Lee difinately never need to question if you do enough. I love the Knot (hand in hand heart to heart) I see when I look at your family – it always makes me smile. We as humans can’t understand so many things but God in his wisdom knows all. We just have to have faith for our wants and needs. Remember, you have people praying and supporting you and although I will be gone till 23rd, remember I will help in any way when I return wheather at the stand or watching over Jack (anything) I will be in touch. I love you and I’m praying for Gods comfort and peace and untied knots. Remember sweet friend a beautiful bow comes from a knot also. Praying for a beautiful bow to come out of all these knots. Love you all! 🙏💕

    Liked by 1 person

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