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!