Riding the Storm

Oh how I wish I could warn you mama…It’s coming, I can feel it, but I can’t control it; I try but it’s inevitable. I am about to enter into another “storm”.

The kids around me look and stare; I think I scare them. I am screaming and crying and my body is arching and stiffening all out of my control; I start sweating profusely.  The camp counselors feel sorry for me; they want so much to help me… if only they knew what was bothering me.  They take me for a walk, which always relaxes me, right? …not this time, it is beyond my control. Maybe I need a drink, or my relaxation medications; they connect the tube and try to administer them… Oh no, please stop the flailing; OMG, there it goes, my “crazy” arms knocked my feeding tube out. I see the panic in the counselors eyes; “what do we do now?” time to call mom!

You finally arrive mama, calm and cool; we’ve been through this before, piece of cake. You attempt to show the counselors how simple it is to reinsert the tube, unfortunately, I am still riding the storm, I can’t relax no matter how nice and calm you remain and ask me to be. You’re trying hard to hide it, but I’ve seen this look before, you are becoming scared. Things are beyond your control too. I know you are scared, but you continue to do what you need to do. Fighting the fear, you and the counselors continue to work on getting something into the hole to avoid yet another surgery. After you have put a temporary fix in place we are off to the doctor, surely she can put it back in, right?

We arrive at the Dr. but still need to wait; daddy is on his way with a new tube. I am a bit calmer by now, but continue the storm continues and become agitated again. Once daddy arrives, the doctor tries to put it back in to no avail; she instructs you to call the surgeon. You do as she says and leave daddy and her and the nurses to continue to get me under control and ready to head to the ER. I sense the tension in your voice as you and daddy decide how best to proceed. I really hate seeing you both stressed, I wish I could make things easier. I know you love me and want what is best; you are both scared for what I will need to go through.

After a long drive with me continuing my “ride”, we arrive at the ER.  Even though it was a really quick check in process mommy, I can still see you hurting and fighting back the tears. There were two doctors there that tried all they could to get the tube back in my stomach…no one wants to see me go through surgery. All the while, I am still fighting my way through the storm, but I have no control; there is no way they can do it. After exhausting their efforts, it was time to call the surgeon. He was able to get it back in after ordering some special medicine to help make me relax. Before we get to go home, they must make sure I am okay from the medication they gave me.

As we wait, daddy tries to comfort me by playing my favorite cartoons on the DVD player. I am distracted for a minute or two at a time, but continue to be agitated. I have been crying and screaming, so daddy decides he is going to give me a drink. You remind him that I really shouldn’t be getting anything to drink by mouth, but he knows that I am very thirsty and he wants so much to make me happy, so he continues to giving me a drink. It was so cool and yummy; I took it down very quickly. I then started to cough, so daddy had to stop. I love that he shares some treats with me.

It has been a long day and I am still not “feeling” well, but it’s time to go home. You and daddy are positive that all I need to do is get home and back in “my space”, so off we go. We arrive home and you get me settled into my bed and go through the nightly routine of getting my feeding started and my giving me bedtime meds. The medicine will surely give us all some relief tonight…or we thought!

I want to rest, I am so tired of this storm, but it continues through the night no matter how hard I try to fight it. You do your best to comfort me, I don’t mean to hurt you mama when you are holding me tight, I can’t stop this; my body is out of control. Oh how I wish it would stop!    When will this storm subside?

The storm continues all the next day and into the evening, you decide that it is just too much for both you and me. It is time to head back to the ER, surely there must be something hurting me. Once again we arrive and the check in is quick, yet I remain very distressed. The doctors never really know how to help me, so here we go again needles to take my blood, catheter to test my urine…here comes the x-ray machine and this time they do a different test… The lady puts some cold stuff on my belly and rubs machine over it. You explain to me that she is trying to look inside my belly to see if there is something that is hurting me. You also told me this was the way you were able to see me for the first time inside your belly before I came to be in your arms. It was calming as you talked to me throughout the test, but still, my body was fighting me, I kept tensing making the test take a long time.

The doctor reviewed all the test results and concluded that I needed more attention than he could provide. The tests showed nothing “wrong” with me, yet I continued to be distressed. He was going to have me spend the night and get some help from the “special” doctors.  It was near morning by the time we got settled into my room. The nurses tried to get me calm and make sure I was safe; all the while, I kept bang and kicking and getting stuck in the bed sides. I know you didn’t get much rest; you were there on watch the whole time making sure I didn’t hurt myself more. I was relieved for you when they gave me a tent bed to lie in, I could roll and kick and bang without hurting myself further. You finally were able to get some rest knowing that I was safe.

For the next couple of days I continue to fight as the doctors do their best to find the source of my distress; more test and more questions. One final test needs to be done and I need to go into a deep sleep so I can remain perfectly still. I can’t remember any of these tests, but you tell me that I took a nice long nap. When I woke up, just as quickly as it started, the storm had subsided with unknown explanation. Although very tired and sleepy, I finally made it through the storm. Now it was time to rest.

The doctors never could find anything physically wrong with me, my body is healthy. The doctor explained that the episodes I keep going through are “storms” in my brain that cause me to lose control. They suggest some medications that will hopefully keep them calm, but they make me very sleepy right; the doctor explained that it will only be temporary, eventually my body will adjust.

You are always sure to let me know what the doctor says; you worry that you’re making the right choice. Please know Mama I trust you, and know that you make the best decisions you can.  I may not be able to say it, but please know mama that I know you and daddy are always here for me and I love you both very much.  Thank you for riding out the storms with me and keeping me safe.

Christine

This time I share her journey through her eyes …

Note: Kaetlyn’s episodes are being referred to as Sympathetic Storming.  Storming affects the sympathetic nervous system (the fight or flight, adrenaline pumping areas) and is a result of a traumatic brain injury.  This is same thing that was causing the fevers last year. The storms can present with any or all of the symptoms.  A a Clonidine patch is supposed keep her system calm with the addition of Risperdone to her medications to keep her in a balanced state…

8 Responses to Riding the Storm

  1. Christine, tears streamed down my cheeks as I read your words. You like Stacie, are an earthly angel taking care of God’s most precious gifts to the world.

    Though not due to the same reasons, (I have a brain injury- from a car accident. For the most part I live a normal life (thank you God)- but there are those times when things get too much and an episode/melt down happens. And nothing or no one can stop the head hitting, and the burst of tears, nor the hyperventilating and down ward spiral of not wanting to live – thankfully these are long and far between now. But in the early days .. WOW!!) All that you wrote is so accurate on the thoughts of someone experiencing uncontrollable body reactions – we wish we could stop; we wish that we did not scare our loved ones; but we can’t stop it. It has to take it’s course.

    Wishing you peace and smoother days ahead. Hugs and blessings, C. (HHL)

    • Christine says:

      Thank you C for your thoughts and blessings. I can only imagine how one would feel being out of control; God Bless you as well as you continue your journey in healing.
      Christine

  2. Melissa Chirco says:

    This one made me feel like Im there with you, just feel helpless. Kaet is lucky to have such strong amazing parents. You guys are truly a team. I pray for answers and hope this “storm” dont come back. Love you both very much.

    • Christine says:

      Thanks Mel,
      I really enjoyed writing this way; I frequently wonder what Kaet feels. This time I was able to out her view (at least my belief of them) into perspective.

      Love you too!

  3. jeanette balzarano says:

    You took the words right out of Kaetey’s mouth. Your are a special person and that is why you are being put through the test. God love you and He is watching to see how strong of an Apostle you can be. We love you and are with you every step of the way.

  4. Nancy says:

    Christine so beautifully written. You need to start a book of all your thoughts that you have written. What can I say but WOW!!!

    • Christine says:

      Thank you Nancy, my writings are a therapy tool for me, I share in hopes to also help other special families to know they are not alone in their journeys. We are a family <3

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