Being home for a little over a week from the hospital with Jack has been so wonderful. The calls, texts, messages & kind gestures towards our family has been so heart-warming. I’ve always been proud of our small town, now even more. When I went into Family Dollar, our favorite employee, Marvina gave me a big “welcome home” announcement. Everyone asks about Jack when they come into The Berry Patch. There was a cake on my porch for Jack from a long-time family friend. A neighbor brought supper over, the acts of kindness have been so thoughtful & greatly appreciated. One of the greatest pleasures though was being able to lie down in our bed on our new Sheets & Giggles sheets, one of my many “holed-up” in a hospital room purchases. They are so cooling but one caveat, they do not stay on the bed right & Lee gets them untucked all the time because they are so slick which is a major pet peeve of mine, but they are extremely cooling. Another wonderful pleasure has been the ability to watch the Golden Girls again. But I am so far behind in everything in my life that I’m about to go mad! My desk looks like I don’t know what, I just put the last of our hospital luggage up yesterday, & keeping up with Jack has been a job in & of itself. I’ll explain later. Last Tuesday, Jack had a follow-up appointment with his now new physician, Dr. Mary Catherine Moree. I was in the process of transferring Jack from pediatric regular doctor care to Dr. Moree but the appointment wasn’t until July. Not sure if Jack would even go to this appointment, I was so nervous about broaching the subject with him. I waited until that day to tell him about seeing his new doc. He went & what a great appointment it was. Dr. Moree is an absolutely fabulous person & doctor. She was so good & thorough with Jack & down to earth. If you’re needing a new regular doctor, I highly recommend her-amazing! Jack’s lungs were sounding good from the pneumonia, oxygen was great, blood pressure on the lower side, but his always is, a Dravet thing, & his hemoglobin had increased since his hospital stay which is great.
Now on to the new issue we are currently having. After having made too many rounds to count with the doctors at UNC about what was wrong with Jack with his refusal to eat & drink, they finally listened to me & started treating the constipation, he has done so well. I’m not saying he won’t ever get like that again, but we do have tools to treat the constipation on a daily basis so hopefully he will not get that way again. When he finished with his checkup, Jack called Mama Noi’s in Ellerbe to place his lunch order, omg! Hugh Hefner ordered two large subs, three onion rings, & a tea, $40 worth! Y’all this child has eat. The eating has been unreal. If you’ve ever watched 1000lb. twins, think about that amount of food that Tammy eats. It’s totally unreal & scary. Since we have been home, Jack hasn’t slept. I came home dog-tired, but not Jack. He came home only hungry. I am not lying y’all, he eats 24/7, he doesn’t sleep, he only eats, pees, & poops. When people ask how he’s doing, I say “great, eating & pooping like a horse”! He is eating so much that I have to VACUUM his BED every night. He doesn’t sleep, only eats. All night, all morning & all day long. Up wandering the kitchen at 3am, 6am, on & on searching for food. The eating is out of control. As I work on this blog, I’m waiting at Bojangles for a 20 piece chicken box which will only last him a few days. Not to mention when I am able to sleep, I can’t because of a neighbors dog, ugh my life!
I buy things through the seasons for Christmas, I picked up a Batman popcorn popper for Jack at Hobby Lobby a while back. I cleaned out my car & set the bags on the porch before Jack went into the hospital, Jack ended up finding it when he went to the doctor last week (because I didn’t have time or the energy to move it). It’s the kind that pops kernels-the old fashion way of eating popcorn. In most homes, a jar of popcorn kernels last anywhere from 5-10 years, our container lasted about 5 days! He eats anywhere from 4-5 large bowls of popcorn that he is popping himself everyday! Y’all remember the coffee bar I tried to have & had to breakdown because Jack was making coffee all day & night? That’s how this has become. He is waking up at 6am popping corn & hasn’t slept yet & I’ve only gotten in 2-3 hours at the most. Pictured below is Jack with his prized Batman popcorn popper. He’s even shopping Amazon for popcorn seasonings!
Jack is even eating breakfast which he hasn’t done in a long time, eating it everyday. The eating is great, but I mentioned it’s also scary. You’re wondering why it’s scary, it’s because he’s eating so much, that the seizure meds aren’t able to keep up like they were prior to him not eating. His body is metabolizing medication differently now. In turn, he’s had some break through small seizures also known as myoclonic seizures. Small seizures often lead to a full-on convulsive seizures that often leads to violence afterwards. It always seems like nothing works together with Jack. The game of Dravet is an evil one. I might go as far as to say it is one of the most complex, difficult, & devastating disorders in the medical arena. The seizures used to terrify me. Now I know I can face the seizures & I do handle them better than anyone else in the family. What I am working on & praying about is the ability to face Jack when or if he becomes violent-I am fearful of him. I live in complete & utter fear of what he can do during a violent streak. What I have learned is that God doesn’t like fear & worry, what good will become of it, but when someone faces real danger & has stared that danger in the eyeballs, that feeling stays with you. It never leaves. I don’t want to live in fear because I want to be happy, but fear is stealing any happiness I may have. It’s hard to believe such a tiny person holds more strength in his two hands than most body builders in their entire body. I’m praying that God will release my mind of the fear & worry I have over Jack becoming violent. I often wonder if this is a test from God? So I’m praying hard to not live in fear. I want to be better & stronger, not the weak person I am when I think of Jack getting aggressive. No parent should have to deal with their own flesh & blood attacking them. I question the why of that multiple times a day.
The ordeal I went through at UNC was torture from a Mama’s heart. They sent us home the first time with hospice care & for Jack to pass. They had conversations with me regarding the longevity of a Dravet kids life. They didn’t even know how to pronounce Dravet much less know anything about the disorder. The team did not give us any hope, they didn’t listen to me at all, their answer was a feeding tube. Am I mad they sent Jack home with pneumonia, no. The reason being is that Jack & I taught the same team that sent him home a lesson I hope. Listen to the parents, they their child. Not every person fits into the same box doctors want them to. Not every person responds to the suggested treatment & I knew Jack would not of. A feeding tube was not the answer for Jack, cleaning him out was-for now. I’m not saying he won’t need hospice in the future, but he doesn’t now. Jack is gaining weight, his little face is getting some fat to it, his voice is so much stronger, he’s walking around on his own, he’s playing games on his phone again, calling people on the phone. He even called Dixie Burger one morning around 7am & ordered two gravy biscuits, that was after he knocked on my bedroom door at 6:45am & woke me requesting his caregiver pick them up on her way to our house. Things are slowly getting back in order for Jack as far as his routine & health. I would love to be able to have all things work together with Jack. I don’t know why they can’t, it’s either one extreme or the other. This is the toughest job I’ve ever had or will have. Thank you all for your prayers, gestures of love, & caring. 💜💜💜