Necessary Evil

Ever been caught between a rock & a hard place? Well this is me almost every single day, mainly with the circumstances involving Jack. We are going to need your prayers more than ever. Many of you know I took Jack for blood work at our local hospital earlier in the week. The results were then sent to Jack’s neurologist at UNC. A few days later, the results came back & it revealed Jack is dehydrated which I knew already & is anemic which he has been for years now. The problem with his lab work, is there isn’t anything we as his parents can do to treat either in the home. With most people, you could say “you’ve got to drink more & eat more red meat & vitamin C foods”, but with Jack it’s not that simplistic. He doesn’t want to drink hardly anything & y’all know how hardheaded he is, it’s his way or the highway. We could treat with iron supplements & I have, but they make constipation even worse for Jack & this is a huge problem for him as he doesn’t poop regular or irregular at all, goes about once every 2-3 weeks. This is a literal catch 22. This is one of the reasons why I have been working on getting a home health agency to come into the home, they could help hydrate Jack & keep a general eye on his health & do labs if needed. We have searched this whole county & surrounding ones for an agency to help us with Jack. They all are not accepting new patients unless he was in the hospital. This gets me to our next rock & a hard place. I mentioned how difficult it has been to find a home healthcare agency that was accepting new patients. They will not accept new patients at all unless the patient has been in the hospital-hence our problem! Jack’s neurologist wants him to be admitted to the hospital for a stay so that home health can be established. They wanted us to come in Friday, April 30, but we had another issue (of course). I took Jack to the bathroom around 1am on Thursday night, Lee was in there helping me with Jack, I stepped out to shut down the house for the night & Lee starts yelling for me to help him, Jack is attacking Lee. He is kicking him, swatting at his head. I go in, grab Jack’s arm to stabilize him because he is so unsteady & thankfully I was able to calm him down. The attack came out of left field. Neither of us knows why Jack did this, it came out of the clear blue. I’ve been trying to wean Jack off one of his medications because he hasn’t needed it, it’s an ADHD medication called Concerta. I’m not sure if the wean attributed to this, it certainly could of, it’s a possible side effect, if it was just him doing what he does, or if a seizure is looming. After speaking with UNC again, it was decided it would be best to put Jack back on his daily dosing of Concerta & wait until Monday. We are hoping over the weekend, he will be calmer & not take the news of a hospital stay in an insane manner

We are skeered, not scared to break this news to Jack. He was a willing participant in having bloodwork for his doctor, but asking him to go into the hospital is a whole other ballgame. It’s nearly a two hour drive up there, he could show out from the one stoplight in Ellerbe all the way to the hospital. I absolutely dread it & even more so with these crazy Covid restrictions. I’m going to be the one at the hospital with him day & night, only one person at a time is allowed to come in. Jack can’t be left alone without a familiar adult with him at all times. I’m sure I will come home with many crazy Covid tales to tell.

Jack had been doing so well behaviorally for so long, mainly because he has been too weak to cut up. I finally just this week had gotten comfortable enough to begin sleeping with our door open & unlocked again. Since 2016, we have slept with the door closed & locked, not anything that Lee & I have ever been completely comfortable with, but were forced to because of safety. So after two nights of sleeping with the door back open, it is now closed & locked again. None of this news with Jack is surprising to us. We all know the struggles he has with eating, drinking, refusing to take medications, refusing to go to the doctor. It was a miracle that he went to get his blood drawn, it cost me a meal from Zaxby’s which he only ate 1/2 of & a Nintendo Switch game that set me back around $100 total. Whatever it took! Jack would of never gone to get his labs done if he would of known what the outcome was going to be, of that I am certain.

I am absolutely dreading telling him Monday. He could go crazy, he could say yes & half-way into the drive, he could demand to go back home, but what I really want y’all to help me do, is pray that God will grant Jack with a peaceful heart & reaction & willingly go & accept what he needs to do. If he refuses to go, we will just keep on doing the best we can at home like we’ve been doing. The part I dread most outside of breaking the news to Jack, is the sleeping arrangements at the hospital. If you’ve never been in the hospital with someone else or yourself, you’re blessed. IV poles beep all the time, people in & out of the room at all hours of the night, doctors start their rounds with the roosters & that’s when I’m just getting into a deep sleep. They want Jack to be alert & if you try to wake him, he can be combative. Y’all just don’t know how badly I am sick about this stay. I don’t even have any decent pajamas to wear! I own one nightgown & it has little holes throughout. The upside of him going into the hospital (if he goes), is he will be able to have a thorough checkup, all medical questions that have been worrying me hopefully will be answered, & of course, he will be hydrated & home health can start. Please, I plead with you all that pray, pray that Jack will take this news well, react peacefully, & willingly go. I think I may tell him the doctor has a $100 gift card waiting on him when he gets there!

Author: dravetsyndromeblog

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