Mama, we did it!

There is no denying we have had an incredibly difficult few months. We lived an entire winter season in the hospital with Jack & most days were critical-not knowing if he would survive the various conditions he endured while there, all seeming too much for one body to handle. I’ve said for years that the scientists researching Dravet need to research why the Dravet patients are so resilient. I don’t know of any other people that are “normal” that could beat what our fella went through. In case you missed what he endured, here’s a quick briefing: collapsed lung, severe pneumonia, paraflu, three surgeries, crashing five times, tear in stomach, loss of tons of blood, kidney function problems, an enormous bed sore, blood clots galore all over his body, severely low blood pressure, withholding of his seizure medications for five days on accident, the weans for the sedation medications were very hard on him, & so, so much more. Because of your prayers & the mercy from our Lord & Savior, Jack was spared. Our lives have been forever changed by God’s mercy & what we witnessed Jack go through so many times. My heart breaks everyday imagining what he he went through. He doesn’t remember the worst of it thank goodness, but I surely do & always will. The isolation I experienced while there with Jack during the increased cases of Covid changed me. Hospital stays are rough, especially when you basically live there & have no comforts of home or a bed. I have not mentally recovered from Jack’s stay either. I’m having a hard time remembering things that I normally could recall such as names, tv shows, etc. I blame that on not sleeping there & not getting much at home either. I know I’m not alone with my experiences & many more have gone through much worse, just sharing my personal experience.

Getting back home has truly been the best medicine for Jack. He has flourished! Instantly, his walking improved upon returning home. I made sure he was made to do things like he used to do himself & walked all the time. His mood has been so pleasant & upbeat, he has been accepting of the feeding tube, he’s put on close to 35 pounds since his discharge, he talks all the time just like old Jack, moving constantly which has helped the bed sore tremendously, won’t stop eating or drinking & that is perfect! Although life for us has been hectic, it’s also been good. Hectic at work with strawberries coming off, Lee trying to get crops ready for spring & summer harvest, renovations at The Berry Patch, & me trying to manage the berry itself while still trying to get things settled at home. There’s so much I have to cook & do just for The Berry Patch this time of year, not mention trying to feed us. It’s been a little difficult finding my footing since being home. One reason is because of my actual foot. I’ve never been a sickly person thank goodness, but I have strange stuff to happen to me, lots of bone & muscle issues. I’ve had to get cortisone shots since I was a teenager because of various pains that X-rays have never been able to pickup. I get a shot or two & am good for a few years in that particular area, only for another spot to start up. I feel I have a high level pain tolerance, have taken one muscle relaxer in my life & swore I’d never take another one & haven’t! No pain pills either. Finally when the pain gets unbearable & affects my activities, I go see a doc. I’ve had a foot problem in the past, maybe seven years ago. The top of my foot ached all the time, I didn’t injure it at all-got a shot in the top & I was set for a while. During Jack’s unfortunate incarceration, the same foot started acting up with a vengeance-worse than ever. With me being on my feet about 15 hours a day now, I needed help. The first appointment was a few weeks ago, when I showed up to a deserted office & told the secretary I was there for an appointment, she looked at me like I was nude! Then she told me the doctor had to leave for the day, he was sick. I totally understand & was not a bit upset. They didn’t have an updated number for me. Not blaming anyone, things happen-particularly to us! Thankfully, I made two appointments with two different podiatrists. I kept the second one. The said my X-ray was great, but he’d give me a shot to help. Out of the dozens of shots I’ve had & I’ve had many in my hips, arms, & feet, this was the worst ever. The pain I experienced afterwards for hours on end was crazy. I guess it was so inflamed the shot agitated it. It’s been a few weeks now & my foot is good as new…for now.

Ava used to tickle me when she was younger, her stories always had multiple “and then’s” in them, in fact I wrote a blog entitled “And Then” once. Here is my “and then”.

Thursday, March 31, 2022 was an “and then” kind of day for us. Jack is having issues with sleeping. He has so much more energy now from feeling better, plus, I took him off his ADHD meds in the hospital, he obviously didn’t need it with being sedated. Not wanting to place him back on it because it causes lack of appetite, but Lord does he need it! He is wild, touching us constantly, as soon as he wakes in the morning & until he goes to bed, he is on me like white on rice, will not leave my side. Although this is better than the alternative that we could of dealt with, this is very difficult for me to deal with because I have zero alone time unless I’m in the shower. But in turn, it’s also hard to complain about considering what Jack has been through. It is an incredibly hard situation to live with. Getting involved in sports, groups, or even going to family’s houses to visit poses issues-seizures. Then it’s a major problem if he has one outside of our home since he’s so big & long, it is very difficult getting him in the vehicle while semi-conscious. There is also the high-risk of him fighting after seizures which he is very prone to do. Channeling this extra energy is an impossible task for someone with limitations such as Jack. He needs ADHD help but not sure what he could take that wouldn’t rob his appetite, cause more seizures, and/or instigate behavior problems as a side effect. Getting back to the “and then”, at 4:30am March 31, I knew that was going to be a bad day. Jack peed on the bed & that is an ordeal. He has so much bedding on his bed, one would think it was 30 degrees in our house at night. I had to strip the bed down before it soaked onto the mattress, get him changed, then he slept with us. And then the neighbors dogs woke us up around 8am barking (yes, still having problems with them). And then that afternoon I discovered on our online banking app that our actual business checking account had been hacked into. I have had debit card fraud before, but I didn’t know the actual checking account could be frauded with the creation of a fake check. We are having to close our business checking account thanks to a piece of trash, which is nothing but a pain in my rear end…especially times like this do I wish I were a man, Lee hasn’t had to do much at all with this ordeal since I am the accountant. Now am I not only in the process of closing that account & starting anew, we are switching banks. The team at Truist seems to not care to find out who did this. Someone made a check, very poorly may I add & it fell through the cracks. Same thing happened with a friend of mine, made out to the same people & designed the same exact way, makes me think it was someone local. I do care to find out & am opening a police investigation. There is not any protection for the consumer. What if that were to happen again in the next month or two or next year, we would have to go through the same process yet again. This is costly for us. We have two different styles of checks, one for payroll & taxes, one for paying vendors & bills. Plus, I’ve got to change all of our automatic payments. Annoyed to say the least & the bank is not even concerned with the person(s) that did this. No wonder fraud is occurring at an all-time high! We’ve been advised to call 911 to open an investigation..

On the following Monday, Jack had an appointment for his first gtube change at UNC. That went really smooth & he did great. From there, we wanted to visit with the PICU team that treated Jack & helped save his life on many occasions. The moment we walked through the doors, the familiar faces that treated Jack went crazy. One commented that they were literally just talking about Jack! A few were in tears, it was an extremely emotional moment for me, too. They could not believe the extreme progress Jack has made. The staff became a secondary family for us. As terrible as it was being in the hospital for such an extended period of time, both Jack & myself miss them all.

After gaining over 35 pounds since being home from the hospital, it seems so strange to us seeing his arms & legs with weight on them & a little belly. We have been delighted with Jack’s tremendous recovery. Over the years I have written about Jack’s violent side. We have all been on the receiving end of his attacks, been frightened on a daily basis of him, had to sleep with our doors locked, & put up with a very sassy-mouthed Jack. Since being home, we have not had to endure any of that. We are now able to sleep with our doors open again, he has been accepting of Teddy & interacting wonderfully with him, coming out of his room all day, he is able to eat with us without being threatening, & throughout the day, he spontaneously says “I love you”. Jack’s new attitude has been our other biggest blessing outside of him surviving such a medical crisis. It has been much like having a toddler doing all of his or her “firsts” & we love it! But, we are worn-out from his new active lifestyle. There are no moments other than when Jack is asleep that he spends alone. It really is stressful as I have so much to do for The Berry Patch at home when I get home from The Berry Patch, it really is stressful trying to make time for it all & keeping him occupied at the same time. There is not any time for Lee & myself, which I realize sounds a little selfish considering what Jack just went through but I am an honest person which is one thing no one will be able to deny about me. I feel like my life is in such chaos right now. Strawberry time is really a busy time for Lee & myself. As soon as we got home from the hospital, The Berry Patch took off running leaving us with zero time for anything else. Farmers taxes are due March 15-I find this strange considering farmers are of the busiest of occupations. We had to file an extension due to Jack’s unfortunate incarceration. In the meanwhile, Coleman’s bedroom has been taken over by receipts. They are separated thanks to Ava, but that’s as far as it goes. I can not work up the nerve to open the door to that bedroom, mainly because I don’t have time since Jack is so needy. My house never got straightened up with Lee living as a bachelor, now bills & papers are piled up on my desk & dining room table because I don’t have any checks to pay them with. I could just go lay down in the road & await a car! It has taken me over three weeks just to write this blog. Plus, Jack isn’t sleeping well either. It’s a Dravet thing. He doesn’t go to sleep until 1:30am (is like a live wire until then) & wakes up frequently & loudly throughout the early morning hours. At best, I am getting five hours of sleep a night.

While this is a lot to process for myself & there are other things going on that I haven’t written about, we have so much to be thankful for & that is what is keeping me afloat now. I love that we do not have any current stress of worrying about sickness or violence from Jack. It is such a weight lifted off my mind. Jack interacting with Ava has been one of the greatest things I could ever witness. They were very close when Ava was a little thing, but drifted apart as Jack’s behavior worsened. Now they are doing videos reviewing food & such & hanging out. Lee & I even have hopes on taking a trip this fall with the kids if Jack’s health & behavior are still doing well. During Jack’s check-up visit at UNC on the way out of the hospital, I experienced a very poignant moment with Jack. Out of the clear blue sky (fitting analogy in Tarheel land), he put his arm around me. Mama caught the moment on camera & I am so grateful. To me, this picture says it all, “Mama, we did it”!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

2 thoughts on “Mama, we did it!”

  1. Thank you for sharing your life with us. I have continued to pray for you every night and have seen how God has blessed you. I have been through the banking being hacked and I know what it is like. In my case most of my bills automatically come out of my checking account so when we were hacked I went trough a week working on getting the old account dropped and the new one started. Although I haven’t been through what you have I can appreciate what you have been through. I will continue to pray for you and your family. Stay strong and try to get some persona time for yourself. We love you and always remember that we care.

    Liked by 1 person

  2. Whew Amy! That surely got me choked up and I hope one day that I will get to meet Jack! Y’all are an inspiration to many families and friends and businesses and I could go on and on! This was my blessing to read this today! Thank you for sharing!

    Liked by 1 person

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