Held Captive at the World’s Safest Place

Fortunately, I’ve never been held captive by a psychopath unless you count Lee 🤣 , but I am beginning to understand what that might feel like for a person. All of mine & Jack’s days & nights are the same. He lies in that bed day & night, restrained now due to extubating himself the other morning. He is mostly sedated, waking several times an hour holding his hands up wanting me to untie him then back to sleep. I imagine this is what it must be like for someone that has been kidnapped. Not knowing what time it is, what day of the week it is (even I am struggling with that), not knowing what happened, & maybe even wondering if he will lay in that bed forever. Jack has so many different people in & out everyday of his room, I know he has got to be in a chronic state of questioning who are all these people. None are ever the same. He is responsive to questions by shaking his head yes or no. I try explaining things to him but I know he is confused. He has a look on his face that tells me that. Every single day Jack has been in the hospital, it has been a day of events. One thing gets corrected, then something else breaks. The hospital is holding me captive, too. Due to the uprise in Covid & Jack’s lung condition, we are keeping visitors to a minimum, but I have to wonder if that should even matter when the CDC has changed the quarantine requirements, plus, medical people can come to work if they test positive & have been vaccinated. This Covid has ruint everything & especially has ruined people’s mental health & those that are in the hospital suffering from lack of human touch & relationships. I can not wait for the day that the creator(s) & the person(s) of this mess is brought to justice. A few days ago, I decided to get a room at the SECU House which is referral housing for caregivers of patients. I finally relented control which is so very hard for me to do being that I have taken care of Jack for 20 years each & everyday. It was a necessity but I feel extreme guilt in doing so. I worry about him waking up & not seeing a familiar face. I worry that he won’t be cared for & watched over like I would do. But there is absolutely no way I could function staying in the room with Jack for consecutive days because it stays so noisy & busy in not only the room, but right in front of his room as well. I have never stayed alone anywhere. I don’t like it. The room is nice enough, but it’s empty just like my soul feels. There’s nothing but a bed, tv & bathroom which is all a person needs, but it is a struggle for me to find comfort there when my child is suffering three miles down the road from me. No sleep that I get is restful, much like Jack’s. All my dreams revolve around him & they are all weird, taunting nightmares.

If things go as planned, Jack will be having two procedures Wednesday. One to place his g-tube, the other is to place a trach to help wean him from the vent successfully since he has failed doing so three times. Dubbed Houdini in the PICU, Jack extubated himself completely a few nights ago. Of course this was my first night spent away from him & I immediately felt like a complete louse for leaving. He then had to go through the whole intubation for a fifth time in a little less than a month. Had I been there, I could of prevented that. Pulmonary took some samples from Jack’s lungs a few days ago, the samples have to have time to grow so the doctors can see what they are dealing with which takes a couple of days. I am still praying that the Lord will grant us with a miracle & the pulmonary team will come back & say “we’ve found the issue in Jack’s lungs & he will not have to have a trach”. The g-tube is going to be a hard enough acceptance with Jack, the trach is going to be a whole other mountain to climb.

It’s been a month now. When I say that out loud, it truly blows my mind. As we all know there are only 12 months in a year & Jack has been a patient in the hospital for a whole month, that seems wild to me. It has flown by but it hasn’t. This is our home for now. It makes me question everything I’ve done for Jack’s care. Should I have done things differently when Jack was a patient back in May with pneumonia? It really makes me physically sick to see him like this & what all he has had to endure. I’m nervous about the trach procedure more than anything. I’ve seen Jack struggle to breathe too many times now to know he’s not able to make it without it. Watching him be intubated in emergency situations kills me & I’ve seen it all four times, missed the fifth one due to me being away that first night. Jack’s developmental delays makes this all even worse. His understanding when he finally gets coherent will be very difficult on him & us all. We are still trying to find out why he’s bleeding, where it’s coming from & why does his hemoglobin keep dropping. It’s just a lot & not anything I ever thought Jack would have to go through.

I’ve been reduced to looking at my phone nearly all day. I can’t concentrate enough to read, so your Facebook posts keep me from going crazy, somewhat. I’ve started watching the Real Housewives of Miami thanks to a friends suggestion but I am not keen on watching a show on something the size of a deck of cards. If I didn’t have a double chin before, one is certainly growing now & not from this awful food either, from bending my head over! The food started out pretty good, but I guess since the new variant of Covid has reared, a lot are out of work. This mess is the pits now. Throwing this term back back to the 80’s, I mean like totally gag me with a spoon!

This is called a Baja Burger, I call it a dirty diaper burger!
Omg, the worst I think. Mashed potatoes & chicken pot pie.
Corn chowder-couldn’t even fill cup up, cabbage & cheddar mashed potatoes. The meat was horrific looking so I got none.

People say DoorDash or GrubHub, but they too & the restaurants are short-staffed so they are really slow. I eat when Jack is comfortable, stable & I have met with everyone that needs to be met with. And too, paying $30 for a meal is crazy especially if it’s not fit to eat either! Y’all know food is a major part of my life, so I’m suffering lol. Honestly, I don’t have much of an appetite which is a good thing up here.

As I sit here in my empty room completing this writing, my heart is aching for Jack & for the family at home & Teddy. I miss everyone, miss our business which I haven’t been to in weeks, & miss life. I’m not mentally prepared for Jack’s upcoming lifestyle changes, but that’s what life does, throws you curveballs at any given moment. We will adjust somehow. Again if anyone wants to know what they can do for us, give blood! Jack has needed four transfusions during this stay, supply’s are very low, the hospitals are all full & many people need blood. Y’all continue praying for Jack to get stronger & for answers to be found.

Author: dravetsyndromeblog

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

6 thoughts on “Held Captive at the World’s Safest Place”

  1. Ÿou are so right Amy,life acan change in the blink of an eye and no matter what,we have no choice but to deal with it! You are definitely pulling that load of super woman and you do it very well! Don’t you worry about a thing,give it all to God! He brought me to the happiest place I’ve ever been in my life after 14 years of misery and granted me more miracles than I believe I deserve! I truly believe jack will receive another miracle and you will speak it into existence! Keep saying it out loud and all these prayers for jack are going to be Answered! You’ve got this with God right by your side! Hold on tight,I see a miracle in the making! Love you all so much!


  2. Headed to Ellerbe next week for the blood drive. Means a lot when you can put a name and face on the recipient. Thinking of you all and praising God for His many blessings…

    Liked by 1 person

  3. I haven’t given blood in a long time but I don’t see a reason why I can’t. I lift Jack up daily to God praying for a miracle. I know some say they don’t know how you do it, but when it comes to your child you would jump over the moon to have him home and well. If I can do anything to help you and Lee don’t hesitate to ask.. Donnell and I love you and all your family and are praying daily for all of you.

    Liked by 1 person

    1. For some reason the Lord led me to your page. I just noticed the post from a customer who asked prayers for you all. I’m literally crying and in tears over the trials you are going through and how long the time has been. I don’t pity you, I empathize. I have a child who has a medical condition and has required 2 surgeries although we haven’t stayed in the hospital as long as you with Jack …I understand what it feels like to be helpless in that situation and I will begin praying for you.

      God is in control of all we do. He is our stronghold, our fortress, and our very help in time of trouble. He definitely allows us to feel overwhelmed and burdened so that we lean on him. When I feel like this and feel the walls caving in around me, I read scripture. The Bible App is so helpful. I also recommend reading it out loud to Jack, it may ease anxiety and put a calm throughout his room. I pray for your strength and will start from this day forward. May you feel his presence.

      Liked by 1 person

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