Misery

I don’t know when I’ve been this miserable! if you’re reading this, then you probably know Jack is in the hospital at UNC & I am his plus one. For several years now, Jack has been chronically dehydrated. When he was younger, he used to drink all the time, he loved sweet tea, water, & of course Pepsi. As he has aged, the need for food & liquid has drastically decreased, which is why he’s now an inpatient. Surprisingly, Jack handled the news extremely well about needing to be admitted. We arrived around 6:30pm Monday evening, finally getting settled in his room around 9pm. I was able to order Jack a plate of food before the dining service closed, I didn’t order me anything because I kept thinking I would be able to run down to get a snack. The nurse/CNA we had were not great, they were not helpful at all to our needs for food, water, getting things for the room. Prior to Covid, parents could get their own linens & we had access to a small kitchenette with a fridge for drinks, food storage, snacks, microwave & such. Now both have gone away. I had to ask for bedding for this make-shift of a bed, then, only getting one thin, hard blanket. I spent what time I did lay on that thing freezing to death. There was not a washcloth nor towel in sight. I’m not expecting the Four Seasons, but damn, we are being admitted to the hospital for several days, we need something to wash our tails with! The nurse tried twice to get an IV started, then a more experienced nurse stepped in & got it right away. Every nurse goes through this, but Jack ain’t the one to play with! The nurse also forgot everything we asked for. Then she’d come in his room with 1/2 his meds & say they were waiting for the rest. Very unorganized & chaotic was our first night.

Fluids were started shortly after the IV. Getting Jack to the bathroom in our caddy-corner suite is something else. I have to unhook the O2 monitor, unplug EKG, hang those wires around his neck, try to hold him up and the IV pole is something terrible. He stops & inspects every single thing from the bed to the bathroom. He doesn’t want any help getting his pants up & down, so that takes even longer, plus he has to pee in a basin which makes it overly complicated for him because he is consumed with it being something different & unusual. I wanted to scream to the top of my lungs while doing all this. In years past, it wasn’t so bad because Jack was more steady on his feet & a lot smaller. Now it’s basically like a taking a tall octopus to go potty! And the bed I mentioned above, is going to kill me. It is a beast to fold out, I nearly slammed the nightstand through the wall (after getting mad with the bed) last night trying to make room for it. Once the bed is fully extended, the bathroom door can’t be opened so I have to push it in. It seems like that would be some type of hazard. Because the bed head cushion is elevated so high, when I did sleep, both of my arms kept falling asleep something awful. One of the worse aspects of the whole ordeal outside of Jack being sick, is there is a constant ringing outside. Since we arrived, there has been a noise that sounds like a work truck in reverse beeping nonstop. I mean it has yet to shut up. I would love to have a Carrie Underwood moment with whatever that is with a Louisville Slugger! Why do I have to be a hound dog? Sleeping conditions have to be exactly perfect for me to slumber, no light of any kind, no noises at all, & definitely no hard sheets or blankets. I see, hear & feel everything. Not only all that, I never get cramps in my feet, but last night, one foot cramped up so bad every time I moved.

The plan with Jack thus far is to start an appetite stimulant, hydrate, & meet with nutrition. A lot of Dravet kids have feeding tubes which would make Jack’s life so much easier & healthier, but he’s not going to do it. He already semi-refused a nose tube, he remembers having one years ago & it traumatized him. Like Lee says, Jack can get an ant bite & he can make it look like a gunshot wound. There is a risk of Jack developing something called Refeeding Syndrome. It occurs when the body is introduced to extra calories after being in starvation mode & can mess with the electrolyte balance in his body. Labs are drawn every few hours to assess this & try to avoid this syndrome. Jack also has anemia which is coming from a folate deficiency, that is also a very favorable Dravet illness as well.

When we have done hospital stays with Jack in the past, they were more manageable & doable because of his size, no Covid restrictions plus, I was younger. Now I’m a middle-aged 40 year old who is extremely hormonal & irritated with everything & can’t deal with this as well as I used to. Humanity & common sense have faded with the Covid virus. It has made things that were not once so complicated, extremely difficult to impossible. But that’s a soapbox that most don’t want to hear about. Right now, I’m thankful Jack ate all of his green beans & broccoli he ordered last night & a cup of grits this morning. Lee is having to make cobblers & chocolate covered strawberries Lord help him. This has always been my job. He has also had to do the running that I normally do for the business bless his heart. I left a list of Amy’s Commandments with the produce ladies, one of them was “don’t burn the place down” lol. We have really good employees on both sides & it’s so helpful knowing they have things under control in my absence. After all my complaining & ranting, I am thankful Jack is at the hospital, but it’s scary at the same time. With Dravet comes along extreme sensitivity to medications, I am very worried about the appetite stimulant causing either seizures or behavior issues. Which may be what we are dealing with now. I may be bringing Jack home against hospital orders today. He has pulled out his IV intentionally, will not get another one. He’s asleep now. He is very agitated & irritable. So if y’all hear I’m home, you’ll know why. As much as I am miserable, Jack is even more so.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog