What’s Next?

We’ve got a very sick boy. For those that don’t know, Jack was discharged from UNC Saturday afternoon. I begrudgingly took him home. Jack was in no condition to be discharged. This story is sort of long, so please bear with me. From the moment the team started treating Jack for the malnourishment with new medications, that child slept from sun up to sun down, which I voiced my concerns about every single day. The meds in my eyes were defeating the very purpose of why Jack was admitted to the hospital. Jack’s constipation problem was finally addressed with prescription strength medication & boy did he poop! He pooped three times & the last one was tremendous, like it clogged up the toilet for real! That was Thursday. I noticed on Thursday he seemed to be very sluggish by then, could hardly walk, had the chills, he also developed a cough but not terrible. One of the Dravet issues is not being able to cough like we all do, so it didn’t sound that bad to me, I honestly thought it was acid reflux. Friday evening his temperature was 99.1, for Jack, that’s a fever. I called one of his docs in & voiced my concerns about the excessive sleepiness & fever, I was reassured it was a side effect of the new medications. He did not eat all day Thursday, nor Friday which contradicted our hospital admission, they also stopped fluids Wednesday to see if his thirst would come back-it didn’t. They said we could leave Saturday afternoon, he could not even stay awake in the wheelchair to go downstairs to get the car. It was awful. I then had to pick him up & load him in the car because he couldn’t walk. My thinking was, I am getting this child home & going to quit these new medications & rehabilitate him myself. I had the prescription for the constipation which I think that was the crux of his whole problem with not eating or drinking. By that evening of his hospital discharge, Jack deteriorated rapidly. His breathing was very labored, he could not hold his eyes open & had a fever. I called 911. FirstHealth of the Carolinas EMS, FirstHealth Moore Regional Emergency Department, & Ellerbe’s volunteer rescue team were all amazing. The ER jumped right on Jack & began working. His blood pressure was extremely low, dehydrated, & oxygen levels were in the 60’s. Thankfully, Jack did not fight like we thought he was going to on the ride there. There were a few times in the ER he slapped at people, but we were able to calm him down. I knew when I called 911, he had pneumonia. Where it came from, not really sure. I’m not so sure he didn’t have it coming in. People with Dravet are more likely to develop aspiration pneumonia which we don’t know that he did aspirate, but it’s a possibility. Jack’s blood pressure has remained extremely low, more than likely linked to his dehydration, he is getting lots & lots of IV antibiotics, & his hemoglobin is very low & he will possibly have to get blood in the morning. On top of all that, Jack is having a fit. He tried to fight several times this morning with Lee, has tried to pull out his IV, complaining about the itchiness of the tape around his arm for the IV, ripped off his saturation monitor & heart leads, & will not leave his oxygen mask on. He is very, very ill both physically & mentally. Ill as a hornet & is a ticking time bomb.

Saturday night, or Sunday morning rather, Jack didn’t get settled & asleep until 5am. Moore county transferred him back to UNC. The ER doctor wanted to know why we wanted to go back to UNC since they sent him home with pneumonia, I said yes I want him to. I was proving a point to all of his doctors. They all poo-pooed what I was telling them, I knew Jack was sick & something was wrong & I was sure to tell them all. I was so very exhausted & still am. When we went home Saturday, I didn’t rest, I had too much work to do. Lee came up Sunday evening so I could go home & sleep in our bed. Unfortunately, I did not sleep well. I let Teddy sleep in mine & Lee’s room. That didn’t go too well. I heard every movement. He was up & down all night. I finally let him out at 7am & then slept well until 10:30. I had things to do at home, shower, had to go to the grocery store twice for Berry Patch supplies, do a few things at The Berry Patch & Lee is texting me constantly telling me about Jack trying to fight, pulling everything off, just out of sorts. So here I sit yet again in this thing they call a bed.

Jack had a really excellent day Sunday. He ate a huge lunch & supper. His eating has continued to improved markedly. The amount of stimulation in his room is a lot. So many doctors, nurses, respiratory, lab, housekeeping, it’s around the clock. I’m like Madea or actually my Aunt Sue, knock on that door one more time & I’m gonna get my pistol! I’ve talked with the team about not coming in so much but it’s hard to do when you have such a sick child. I know they are doing their job & helping Jack as best they can, but Jack won’t let them. It’s getting frustrating for me as well. I’m constantly having to bribe & beg Jack to not take something out or off. It is all too much for my mental status. I just don’t understand why one person has to have so many troubles & then on top of all that, he has to be violent. Seems so unfair & cruel (now you see why cruel & unusual circumstances is the name of my blog site). And then when Jack does get to come home, it’s going to be so very difficult because he’s going to have to have follow-up care. I don’t know how I will get him there. To top things off, Chapel Hill was under a tornado watch this afternoon. Which I didn’t care, I wish it would of blown me away from all of this! Jack doesn’t want anyone else but me. I’m the only one he requests when I do get to step away. I stay hungry, can’t do a lot of GrubHub type of deliveries because Jack doesn’t want me to leave to get it now that he is staying awake more than what he was last week. I come to all my friends & ask that y’all keep praying that a calmness will take over Jack’s body. That he will be accepting towards treatment & not put up a fight of any kind & keep his IV in. I’ll keep y’all posted. Thank you all of loving & praying us through this most difficult journey.

Author: dravetsyndromeblog

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