I don’t know about with you, but often times there is hell to pay when you come home from a vacation. I wouldn’t exactly call ours a vacation, it was just two nights & I got severely sunburnt. I tried the Preparation H cream, poured a beer on me which nearly caused me to die because it was so cold, & many other remedies. Our vacation centered around the water from our evening speedboat ride, a day by the ocean unfortunately resulting in a severe sunburn but totally my fault (my belly hasn’t seen the sun in 10 years), a dolphin cruise, but regretfully our parasailing adventure was canceled due to a storm, eating of course & nothing decent enough to speak of. I was blessed by our Creator in many ways, cooking was one of those blessings, it’s also a curse. It is so very hard to enjoy a meal without critiquing how it could improve. I’m a hard restaurant sell & I really wish I wasn’t. Other than having severely burned skin, I came home to a home without Teddy-he’s at training camp, plus, I came home to a sleepy Jack at 5:30pm who hadn’t drank anything all day or ate anything other than an applesauce. It’s so very hard to keep this life going at the pace we do. I tried so many things with Jack when I got home from mashed potatoes & gravy-he spit them out on the first bite & he usually loves them. I tried some of the protein gelatin cups I bought before he went into the hospital two months ago-spit it out. I can’t blame him on that one, it stunk something awful. I gave him some vitamin chews that are supposed to stimulate his appetite after all that. I also made a protein pudding cup that is currently chilling & I’m praying he’ll eat that. After doing all that & with all the encouraging in the world, I wanted to have a mental breakdown because he didn’t eat anything. This lifestyle is exhausting mentally more than anything. I get so absolutely frustrated with Jack’s circumstances. He can’t help any of it I know. Trying to maintain a household, a business, & the full-time job of tending to Jack is a lot on a person. When I left on Tuesday morning, Jack had two Gatorade’s on his nightstand from the previous day, when I got back, he had drank some out of those Gatorade’s not much & only a few sips of water through Thursday. When I came home, I tried my best to get him to eat all these things, drink different things. Nothing was good enough. He wanted a Mt. Dew in Coleman’s Wolfpack cup, but never drank a sip. Then he told me he wanted it in his Daddy’s Rockingham Rockets glass. He will do absolutely anything to get out of eating & drinking. I just had to go in another room & cry because I got so irritated with him. After going through his list of demands, he still doesn’t eat or drink.
All this with Jack’s decline started a few weeks ago when he started worrying about his birthday. He’s a child that starts planning for his next birthday the day after his birthday. With Dravet, the kids can not handle excitement. A lot of the time seizures result during special events or gatherings. Lee & I both think some of Jack’s problems this go round are due to anxiety over his birthday. The anxiety causes him to be knotted up inside with the inability to eat which in turn has caused him to be lethargic amongst other things. All he thinks about when he’s awake is his birthday, going to Chuck E Cheese, his cake, & what gifts he’s going to be receiving. Jack tells everyone what they can get him. I’m not saying this is the whole issue, but it’s definitely contributing to it. When I returned home from our beach trip, Jack was listless, down, even like that for the two days I was gone, but as the evening progressed, he perked up, played his guitar, played music. It was like he was depressed that I was gone. I am his BFF. I never wanted to be my child’s BFF. I wanted them to be able to experience a best friend on their own & keep the friendship/mother/child relationship separate, at least while they were young. Then as they got older, I would welcome a best friend relationship. As you can tell, having a physically & mentally ill child that relies solely on me is very difficult. Every single day it is something. Whether he’s feeling good, drinking lots, eating lots, I’m having to run around town buying food or gift cards for him. If he’s feeling bad, I run around town trying to find something for him to eat or drink. It’s completely crazy the lengths Lee & I go to accommodate Jack.
Another extreme we went through was just yesterday. As I’ve mentioned, Jack is getting back into bad shape again with not eating or drinking. Partly because of Dravet in & of itself, also because he won’t take his pooping medication like he’s supposed to. When a person gets dehydrated, their bowels get dry-up. Dehydration also causes fatigue, vomiting, low blood pressure, all of which Jack has exhibited. Back when Jack was last hospitalized at UNC, a local friend told me about an in-home hydration service. The service is provided by an RN. She comes to your home & offers hydration and/or different cocktails like vitamins to help perk people up & avoid a hospital situation. Of course this is not covered by insurance, but it beats the alternative. I talked with her Thursday & she came out on Sunday afternoon. Jack was very receptive to her, she was so wonderful with him. She gave Jack two bags of fluid & some vitamins. After the infusion, he requested some soup & drank it all, even drank two cups of drinks. A huge win! I purchased from Amazon (thank goodness for the convenience of Amazon) calorie boosters that don’t change the flavor of food or drink that gives him an additional 330 calories from one small cup. Some of you enjoy my blogs, some think that I shouldn’t disclose this information, but I am grateful for our story being shared. Without me sharing Jack’s story, I never would of known about the in-home hydration therapy. If you’d like more info on this service for yourself or a loved one, here’s the info: https://hydreight.com/bp-charlotte/
On a lighter note, Jack’s new guitar has been replaced. In case you didn’t know, we lost Jack’s old guitar & we had to buy another one (another reason to be thankful for Amazon). I don’t know who was happier to get the guitar, Lee or Jack!
The goal is to try to get Jack on a biweekly hydration schedule to help curtail a hospital stay. We surely don’t want to have to go that route again & he is adamant about not going to the doctor. I blog in weird places, right now, I am sequestered inside Aldi after doing my Berry Patch shopping because it is raining so hard. And of course there’s a strange man that won’t stop staring at me, he’s giving me the creeps. Over the last three days, I have seen enough rain (and creeps)! I’m also starving, might start eating the beef jerky I bought inside the store! I wish Jack had a little of my hunger pangs & I had some of his lack of desire for eating. Life is never an equal balance for us, although researchers say it’s important to have balance in all areas. I have an over abundant surplus of stalkers, hunger, weight, & more distress than most people. On the other hand, I have not enough sleep, time, or sanity. And I’m a Libra, our sign is a balance scale! Plus, I slightly hit Lee with my car today (he is okay). I did tear into the jerky’s, I bought four varieties. Three will land in Lee’s truck (I give him everything I don’t like), the clear winner is actually the pig jerk. It’s softer & more flavorful.
Any who, y’all keep praying for Jack to bounce back without hospital intervention. 💜💜💜