I’m the mother of three kids, one with a rare, catastrophic illness called Dravet Syndrome, wife of a farmer & business owner. I decided to start a blog to let people know what a day & night (which are often the worst) is for us. Raising kids is hard, but even harder when you have to face the challenges our family deals with on a daily basis.
I am going to be very open about this journey. It is going to be heartbreaking for some of you to read, but that’s our life. You will see that I am very much like you. I have terrible days, sad days, & happy days. Throughout all of this, I try my best to maintain a sense of humor & a smile. Without laughter, the sea of darkness would of towed me under long ago.
I haven’t blogged in a while & I thought I’d catch y’all up on what’s been going on in our lives & our journey with Jack. Life has been pretty difficult since coming home from the hospital back in March of this year. When I say life is pretty difficult, I don’t mean like last year when Jack was so sick, I mean in a sleepless in Ellerbe way. Lee always hashtags “Ellerbe Strong” on his Facebook posts, but my new hashtag is “Ellerbe Tired”. My whole life now revolves around either trying to keep Jack awake, trying to wake him or trying to get a few hours of sleep myself during what we consider typical sleep hours. Sleep for all Dravet patients & their caregivers is not something that comes naturally. Very often Dravet patients don’t sleep well because of seizure activity during sleep. The nighttime hours especially during the ages of 4-16 were particularly rough for Jack. Little seizures like head drops or arm tremblings would occur in the middle of the night maybe up to 100 times in a row, then he would have a full-on grand mal seizure as a result of the 100’s of seizures prior, sometimes five or more grand mal seizures (the kind you see on tv) a night would occur. Often times with Dravet, these kids/adults have subclinical seizures that can’t be detected that also disturbs sleep. Jack’s circadian rhythm is off big time! He sleeps four hours, then awake for four hours, sleeps for four hours, awake for four hours . This goes on all day & night. I’ve written about Jack’s sleep struggles & ours many times, but nothing has ever been this severe or extended. Life has been pretty depressing as well. With the days being shorter & cooler, the The Berry Patch doesn’t need me as much, there is not nearly as much going on as in the spring & summer, I feel useless in some ways & lazy also. If Lee nor myself aren’t working 15 hours a day, we make ourselves feel shamed even though our rational minds says it’s okay to slow down. We enjoy the hustle & bustle. It takes our minds off of stressful brain noise that can be a constant when you have a special needs child. We are also going through empty nest syndrome. Ava is 17, off doing teenager things & that really does make me happy, but I do miss the days when she & I watched Patty Duke every night. She might be the only teen on the planet to have seen this show! Lee comes in & goes to sleep with Jack & there I sit!
Jack has taken us back to food struggles in many ways over the last few months. His appetite is still good, but he is still busy ordering food & not eating it. We have two full-sized refrigerators in our house, one for the kitchen, one for Berry Patch stuff-neither are big enough! Jack needs a full-sized fridge in his room for everything he orders just so we can have room for the aforementioned. The waste is unbelievable. Jack has been more mobile since his return home & getting out way more, although it’s great, it is also annoying. Jack orders all kinds of food & doesn’t eat it, then he orders food to take home that he doesn’t eat. The amount of money he wastes on food alone would make any financial planner fall over dead! Jack can find fault with anything, really pushing you to the limit all the time. If his food isn’t on the right plate, or cut just so, or he will say he meant to say he wanted something different other than what you served him-doing absolutely anything to get out of eating. Drinking is also an issue. He doesn’t love to be hydrated, this is a trait he inherited from Lee. It’s “the cup is wrong, didn’t want a straw, the drink is too cold”, the list is endless. We get so aggravated with trying to serve the master of our domain because he acts like a tyrant (hence his nickname Hitler). The amount of effort it takes every single moment to get Jack to either stay awake, wake up, drink, eat, sit up, take meds, move around is exhausting. It is like having five full-time jobs.
I posted about two weeks ago on Jack’s anniversary of going into the PICU on life-support & how pleased we have been with how well he has done & how our prayers were answered with Jack’s behavior. If you happen to be new to my blog, for years, Jack was violent with us & attacked us often. Two days after my praise report Jack fell asleep in our bed. It was past Lee’s bedtime & he tried to wake Jack to get him out of our bed which has become a second home to him. Jack had an outburst & started hitting Lee. It had had been a little over a year since Jack got violent with us. This is such a depressing change of events. The only humor I could find in the situation was tonight while Lee & I were watching The Sopranos & Tony’s son Anthony was giving him lip, Tony grabbed him by the throat & threw him against the wall. I told Lee that Tony Soprano needed to be Jack’s Daddy! We did the only thing we could do with Jack during his outburst, which was to hold him down, talk to him soothingly & he stopped pretty quickly. Later he told me he couldn’t control himself. I don’t know where he heard that mess. In my head I’m cussing him out, but all Jack’s saw was a caring face. I’ve touched on the fact that a few of my dreams have come to fruition in a past blog & how I am sometimes tormented by my dreams. Many times my dreams are warning signs of trouble. For the last few weeks I’ve dreamt of snakes, some violence, hard stuff, now I know why. I knew something was going to be going on with Jack, I just didn’t know in what way, shape or form.
And while we aren’t as stressed as we have been, we do try to do more with Jack because he isn’t as bad as he used to be but here lately as explained above, we can see some attitudes popping back up. It makes everyone around us elated to see Jack out & about, but people don’t realize the stress it creates on mainly me since I’m the one doing with him most often. Jack is a thief & doesn’t know it! He orders all the food in the world as I mentioned & never eats it, if you take him somewhere he wants literally everything he lays his eyes on only to never touch it again, & he can never really enjoy the moment because he is too busy thinking about what he can spend our money on. I hate to sound so negative, but if there is ever anything people can say about me is that I have been honest & upfront from the get-go. Jack will test every single limit you have every single day. He was better this past summer because he was swimming several hours a day & burning off extra energy. Now that the pool has closed, we have seen a change in behavior & energy level. No one wants Jack to be involved more than we do, but it is not easy & tears my nerves all to pieces.
Though this blog sounds like a ‘let’s dis Jack blog’, he is a sweet, caring, funny child. He still randomly says he loves us, always says thank you, & cares about whatever it is we have going on, but Jack needs to be on something for his behavior, but prescription meds for this are not his friend & typically not a friend of Dravet. A lot suppress the appetite which we don’t want to do, a lot interfere with his meds, & a lot don’t mix with Dravet period. It’s a game sad to say. He needs some sort of stimulant to stay awake during the day without affecting his appetite, making him more aggressive & more attitudish. Some of y’all know I dabble in natural supplements so I am looking, but I have to be very careful with those as well due to his seizure medications. Not only is Jack sleeping when we are at work, he does not have any interests at all any more to help keep him stimulated. He rarely touches his phone, never his Nintendo, computer, tv & on most days, these were all things he would not do without at one time. The good thing is by not having phone interest, he’s not talking to strangers & getting catfished. Christmas shopping for Jack is also very difficult now as well. He has no interests any more so I feel like everything I am buying for him is pure & utter junk that will never be touched. Jack is very much looking forward to Santa visiting & leaving him gifts though.
One moment that shocked me with Jack a few weeks ago was when one of his favorite Power Ranger actors died in real life, Jason David Frank. Jack has not cried since he was a toddler, even with various family members passing away, all the needle sticks & illnesses. When I told him the news about one of the founding father Power Rangers, he threw himself on the bed & cried for about thirty minutes. Jack was in a depression for days. I said that boy probably wouldn’t shed a tear when I pass on & there he lay crying over someone he doesn’t even know!
The blessings we can count even with severe sleep deprivation are Jack’s health, his sense of humor, continued appetite, & not talking to strangers online. I am so thankful our Christmas this year will not be spent in a hospital. As a year has passed since Jack’s hospital entry, to me it seems like yesterday. I think of that period each & every day. It was misery. I knew in my heart with every fiber of my being that Jack was going to be okay. God spoke to me & gave me that sense of calm & knowing, although the storm getting there was anything but calm, it was a category five hurricane! As we go through this special season of celebrating a healthy Christmas at home, we would like to thank you all once again for the prayers, caring hearts & offers of help during Jack’s illness last year. You all mean the world to us, have a Berry Merry Christmas!
I have not blogged lately, as things have been a little cray cray at The Berry home over the last few months. My life is in turmoil I feel & it all is centered around sleep deprivation. Never in all my years of caring for Jack have I been this sleep deprived for this long. It really all began prior to Jack getting sick last year. He would sleep much of the day & be up most of the night & early morning, falling back asleep when my day was just getting started. Once Jack went into the hospital, the lack of sleep continued due to hospital stuff obviously & that was for three solid months. When Jack came home, things did improve, briefly. Lack of sleep was no problem then because I was riding on a wave. A wave so blissful, calm, & peaceful, & one of pure joy that nothing upset me. For five wonderful months, Jack was seizure-feee, behavior outburst-free, & in excellent health minus him having Covid but did well with it outside of extreme fatigue. That period was one of the best eras of our lives, it just didn’t last nearly long enough. When the shoe fell, it knocked a hole in the floor! It took one seizure to bring back the old Jack that I feared for many years, that made me perpetually exhausted, depressed, afraid to the leave the house & scared to live in it at the same time. It was three weeks ago that Jack blew up at me over something that we had not even been discussing. I was home alone (usually am during frightening times), didn’t have my phone on me, but I was able to escape out the back door before it escalated. I was terrified. We have no neighbors that I could go to if need be during the day, so I waited about twenty minutes outside in my nightgown looking like a hant before going back into the ring. I was hoping Jack might be calmed down before I went back in. He was in his room with the door closed. I called Lee & waited back outside until backup arrived. About the time Lee arrived, Jack came out saying “I’m glad I didn’t do what I did in the 5th grade”, which was beat his assistants tail. Nothing is more disheartening than having your own child be violent on you or someone else & it would not be as scary if he weren’t strong as Andre the Giant, Hulk Hogan & Ivan Kolff put together. It would be so very different if I could defend myself without him or myself getting injured. That one seizure turned into dozens of seizures before we could get a handle on them.
The other issue that has brought back “old” Jack is him looking for a girlfriend/wife. Since being home from the hospital, Jack has not been on his phone nor iPad hardly any which has been a huge relief for us…until the seizures started back in August. That is when the search began for a girlfriend/wife & inappropriate communications with strangers started right back up. The one positive from his hospital ordeal is he’s not as consumed with the phone as he was last year. There are days that he doesn’t even turn it on. If Jack could have hobbies, help out at The Berry Patch or had friends, I think that would help take some of the worry off his mind about having relations with another woman (that sounded Bill Clinton-ish). Back when Jack was very active on his phone, talking day & night to strangers & getting catfished, he did some terrible things that I will never speak of. I tried to reason with him when he was 15 that he didn’t need a wife then, he was too young. I told him when he turned 21, he could start looking for a girlfriend & he wanted me to help him find a young, blonde woman for him. Of course my wisdom didn’t stick at that time, but he didn’t forget what I said. When I told Jack that, I honestly did not think he would still be living with us. I thought he would be in a facility due to the violence. It was bad if you’re new to my blogs, I mean terrible. I used to carry mace with me at all times in the house. A few weeks after he turned 21, Jack brought up the girlfriend search. I had totally forgotten about my promise. He keeps asking me now, & I keep telling him not everyone gets married, not everyone has a girlfriend. We have to do what the Lord guides us to do. He’s been okay with that thus far.
He has also become obsessed with going out to eat a lot (like his Mama). The problem with that, he always demands to go during inopportune times. When he gets to the restaurant, he doesn’t eat, then orders enough food for a family of four to take home, hence the nickname Hugh Hefner. During one of his more recent outings, his main caregiver, Sherry took him out to a local Mexican restaurant, Jack met saw a group of family friends there & made himself at home at their table! Which they were wonderful to him & I am grateful they have such kind hearts.
My bubble has been burst. When Jack was released from the hospital, he was so kind, loving, & caring. Sporadically saying ‘I love you’ all through the day. I understand how seizures can cause behavior/mood changes, I can’t imagine what his poor brain must feel like & body, but in the throws of the situation, I don’t think about that. All I can center on is why we have to have so much turmoil in our lives, how can someone so sweet strike you like a viper in a millisecond, & honestly, why me, why us!
One of the most difficult aspects of managing Dravet Syndrome outside of communicating with his neurologist is medication. It is very easy to over or under medicate. Jack has been on the very same seizure medication regimen since 2017, it was time for a change, particularly with the rapid weight gain recently incurred. Jack has an issue with low blood counts so I wanted to make sure we stayed away from increasing a particular med he is on & keep that dose the same since it can make those levels lower, but who am I kidding, all of his medications can have mild to severe side effects. I was given two options from his doctor since there was one I wanted to avoid increasing. One is known to be the worse one for behavior so that option was immediately out. The other instantaneously caused an outburst. There I was left with the option that I didn’t want to do, but had to do it any way. Every increase has to be slow. I started the increase with the nighttime dose only hoping that would be the only increase, but again life laughed at me & said ‘increase both am & pm’! Thus far, it is working. I am grateful for that & pray that it will continue to for a long time.
As I try to make it through each day so very sleep deprived that I forget nearly every single time why I walk into a room & have a difficult time speaking the English language, I say to myself, ‘how much longer can a person exist so inadequately rested’? The only answer I have is, until I can’t. If I’m lucky, I get about three hours of undisturbed sleep right after falling asleep & from that point on, I am doing math-calculating down to the seconds how long I’ve slept. Then the process starts all over again on & on until I finally start my day. Jack’s typical schedule is: he goes to bed at 2am, wakes up around 5:30am, is up until 9:30am, back to sleep until 1pm, naps at 7 or 8pm, wakes at 11:30pm & the process starts all over again. Waking him up is such a struggle, you don’t know hard labor til you give waking Jack a go! This is such a mean, evil process & one of the most unspoken aspects of Dravet Syndrome. Some many Dravet patients face severe sleep challenges & means so does the caregiver. With our line of work, it is impossible for Lee to help out with him having to be on the farm early in the mornings.
I feel like I have a newborn but without the luxury of being solely a stay at home Mama as I was for many years & without the energy of a youngster. Now that the kids are nearly grown, I have way more responsibilities with owning & managing a business along with the duties of a 20 something or 30 something new Mama. I’ll be 47 soon & I’m tired before I even wake up. My energy level is not what it was. I’m an illbox (as my Daddy refers to it as). I can’t stand myself because I’m so sleep deprived. It wouldn’t be so bad if Jack didn’t have the seizure risk & I didn’t have to constantly listen out for him. I have a monitor in my room & can hear every single movement he makes, even if he rolls over in the bed. Being able to hear like a hound dog definitely has it pluses & minuses. I would love to have a doctor like Michael Jackson had for a few days to knock me out (without death of course)! Propofol sounds real good right now! I’ve had that & Morphine once each in my lifetime & it was the best time of my life!
As I close this blog, not only do I ask for prayer for a better sleep regimen for Jack & myself, but ask for prayer for a Facebook friend of mine. She doesn’t live in NC, but she lost her 15 year old Dravet son this week due to an extended seizure. That hits home for every single Dravet parent in the world. Our world is small & these losses are horrifying. This syndrome is so devastating & complex & affects the whole entire family. Thank you all for caring & praying. 💜💜💜
What a trying past few days! Jack has been doing so well, so well in fact that we got way too comfortable with how well he was doing. How could we not! After the several years of nothing but severe behavior & medical issues, we honestly felt like we were on an extended vacation with a tremendous hangover the next day! Why a hangover, because Jack has not slept well since he’s been home from the hospital in March. At best, I get three or four hours of straight, undisturbed sleep, after that, I’m lucky to get two hours & that included about 25 interruptions from Jack. Jack has never had any concept of personal space, other people’s needs, or time. If he goes to sleep at 2am, he thinks it’s perfectly fine to come jump on my bed while I’m asleep at 6am or carry-on in the kitchen trying to find something to eat after he’s only slept a few hours. It’s been very difficult keeping up with a job & the extreme lack of sleep I’ve had. Lee, Ava, & myself actually had a peace of mind for the first time in all of Ava’s life & years for Lee & I even though I was/am exhausted. I knew I was tired but I guess i was experiencing a natural high from the sheer happiness of not having to worry about Jack’s behavior or seizures that that kept me going. Jack has gotten out more than ever, visited more than ever, & has eaten more than ever & that is not a good thing since being home from the hospital.
Him eating became a point of contention when Jack was in his mid-teens & it’s a side effect of Dravet & the many medications he takes on a daily basis. We would bribe, beg, plead, ride all over our county picking up his food requests only to bring it home to rot in our fridge. This was also the period that the violence was peaking & the smallest thing would set him off. If you’re new to my blogs, Jack was very dangerous when violent & it was extremely scary for us all, even my strong husband. Jack was too much for three people trying to hold him down. In saying this, you will appreciate our elation in being overjoyed that Jack had not been violent since last year & his eating has improved greatly. I can’t tell you the amount of food he eats on a daily now & that has picked up big time over the last few weeks for some reason. He loves the Tostitos Scoops chips & the Tostitos yellow cheese dip. When I say love, I mean love like Pee Wee Herman would say, “do you love cheese dip? Then why don’t you marry it?” Bet you read that in Pee Wee’s voice! Jack is that in love with it. With supply chain issues, as Lee & I head home from work, we often have to stop & get Jack’s food requests. One stop is at the Dollar General hoping to get everything there, but finding out they only have one bag of chips & no dip. Next stop the grocery store, grab two jars of cheese dip & one bag of chips, last of all they had. Final stop & praying they have enough is Family Dollar, they are fully stocked with the yellow cheese so we buy 6-8 at a time. Jack was eating 3 jars a day with about 20 scoops total. It was funny at first, then it wasn’t. We were hoping the fad would die, but to no avail, cheese dip, cheese dip, cheese dip is all we hear. People say “be glad he’s eating” & no one is more thrilled than us, but with Jack, his life has always been this way, there is no happy medium…ever, it goes from one extreme to the other. His daily caloric intake looks like this, 3 jars of cheese dip, a whole frozen pizza, breakfast croissant, 5 hotdogs, then two plates of Mexican. All of this except the latter are processed foods. Anyone who knows me well, will tell you I never, ever eat processed foods, no cookies, crackers, frozen meals, nothing like that so it is very nerve-wracking to me to watch him do this to his body all in one day! It’s nothing but pure chemicals. Coleman & Ava always told people at school & teachers that I only ate organic, it is a characteristic they can’t stand in me! While at Target last week, the conveyor belt looked like I was having a Super Bowl party…for the Carolina Panthers team! He’s so worried about cheese dip that he called Lee one morning at 7:30 & said he was out & needed more. Lee went to our wonderful Family Dollar & bought them out & delivered! This is how deep the cheese dip obsession goes, I was talking to Ava when this was recorded & Jack chimed in: https://youtube.com/shorts/1UDS6ki3T64?feature=share
The effects of Jack’s diet showed up last week. He began having seizures & he’s not had one since March. I knew he was going to seize when he started acting wild & being unruly, that was the first clue. He had his first seizure right after going to bed one night at 1:45am, then woke up from 5:30am-10:45am & had the next one. A few days later, the same pattern repeated similarly, seizure at 4:15am, another one at 7:45am. The last few caused him to be incontinent. Jack sleeps with all kinds of pillows & blankets & thick ones at that. It honest to goodness took me from 11am-3:30pm to wash it all & that includes hanging it all out because it’s so thick & I am organic & all 🤣 thanks to those confounded new washing machines that I hate with a passion (even wrote a blog about it once). There is no sleeping between seizures for me for two reasons, I am worried he’ll have another one & I won’t hear it & I am worried he’ll become violent afterwards like he has so many times before. I have worked myself into a depression with these recent events. I’ve tried to talk to Jack about eating too much dip, even lied to him & told him the doctor called & only wants him to eat two bowls of cheese dip which equates to one jar a day. Today, he abided by that request. I think he’s eating too much & his current meds can’t keep up with the calories he’s ingesting & I also think all those chemicals he is eating may be playing a role in it as well. I am currently waiting for a response from his neurologist (who doesn’t have the best response history) on what medications we can up. I hate to do it, but it is a necessary evil. Those meds have so many side effects from behavior issues to eating disorders.
The tiredness has hit me because I am no longer elated. I’m scared, nervous, anxious, & on edge. I am tired like I have never been, even through his lengthy hospital stay. I just want to cry all the time now due to being tired. It’s a bad feeling. Overwhelming exhaustion makes you make mistakes, stump your toe, spill stuff, bite your lip. I’ve been so ill, too. Especially since I haven’t had any television to watch. Our sorry Directv has been out for five days now. It’s depressing not having the tv on or not being able to have our normal background noise. I feel like we’ve had a hurricane without the hurricane. What I wouldn’t give for a solid nine hours of sleep without interruptions. In closing, I ask that all of Jack’s faithful prayers warriors will lift him up & specifically ask for a calmness to come over Jack’s body, for the seizures to halt, the doctor to reply back to me, & normal sleep hours be restored to Jack’s body. Thank you for reading, caring, & praying! 💜💜💜
I’ve said since the show Seinfeld was released, they basically were writing about my life…minus all the sex story’s lol. Before I reveal about the clown, I’ll give y’all a quick update on Jack. I’ve not had the opportunity to blog about Jack in the last few months because he has been doing so good & praise the good Lord he hasn’t given me much material to work with. At one point, I could have written a blog about Jack nearly everyday. He was either getting into computer stuff he didn’t need to know about, tormenting us with terrible behaviors, or sick. We honestly never knew what each day would bring & what kind of torture he would put us through. If you’re new to my blogs, Jack would meet scammers online & they would make him make us buy them gift cards in turn for “love”. No amount of talking to Jack could make him understand what was actually going on. He even told us a girl was moving in with us a few years back & there was nothing we could do about it. Talk about scared! Lee nor myself slept at all that night wondering if someone was going to come to the house. Thankfully, “she” never did! At this point in time, Jack doesn’t really have any interest in his phone any more. This has been a huge blessing to us. His days are spent by the pool, talking on his hamburger phone, planning his birthday that’s coming up in a few weeks, napping, watching TV, & seeing who he can get to deliver him food! Food trucks are all the rage now & our town has a great one, Max’s Millstone BBQ. Jack called Max & asked if someone would bring him a few bottled waters to the house. Now, we have filtered water from our sink, but that was not good enough for Mr. Hugh Hefner as I lovingly refer to Jack! He paid for them upon delivery. Just this week, our local sub/pizza place delivered Jack some chicken wings, french fries & a tea. They don’t do delivery, ever! When I asked Jack how he arranged it, he wouldn’t tell me. Said it was a secret! I was completely shocked when the doorbell rang & a Mama Noi’s representative was at the house. This young man can get anything done! I’m sending him to the White House to straighten out that bunch!
Jack has had Covid. We found out this past week, his only symptom was extreme lethargy & I mean extreme. Mama also had it & my sister. I took Jack to his primary care office earlier this week because I suspected it but knew on Saturday something wasn’t right with him as his eating & drinking slacked off drastically & I could tell by the way he was holding his head something wasn’t right, but I couldn’t bust up in there & say “he’s not holding his head right, so I know he’s sick”, I had to wait for more symptoms to develop & that was through tiredness. I felt like Jack was developing pneumonia again but to my surprise, his lungs looked great. When we got checked in, his blood pressure was very low, he has that issue any way, most Dravet patients do. He was also dehydrated which contributed to even lower numbers. The PA’s were wonderful & whisked Jack to our local ER right away. From there, he got two bags of fluid & a positive Covid swab & he was allowed to go home, but not before we got a tongue lashing about the Covid vaccine. I don’t mind telling anyone that I’m not vaccinated, nor is anyone in our house. If you don’t already know, Jack’s first seizure occurred just four days after his six month immunizations. There is a connection between vaccines & Dravet & even though Jack is a higher risk patient, we still feel the vaccine is not right for him or us at this time. The ER doctor advised me to consult with a geneticist to see if the vaccine would be right for Jack-please! A geneticist couldn’t even discover Dravet Syndrome, so no thank you. The staff at our local hospital was amazing however, this doctor was annoying with his lectures to us. Not only that, he pushed the antiviral Paxlovid on Jack & he couldn’t even have it due to interactions with his seizure medications. When I inquired about the monoclonal antibody infusion, he said they don’t even prescribe that any more or do it. I knew that part of that statement was an outright lie, the part that they don’t do it-they do! On the doctors third time in to deliver the news of a positive Covid result, I declined the Paxlovid & asked again for the antibody infusion & this man raised his voice at me to say “I told you they don’t do it any more”. Now, he better be glad I was too worried about Jack or I would of lost it. I am so sick of medical professionals pushing the vaccine & now this antiviral drug. So many are hung up on these two things & many patients are becoming complacent because they are either too scared to speak up or don’t know of any other treatments. Jack was signed up for an appointment for the infusion when we left, but I didn’t end up taking him because he felt so much better after the fluids. Y’all don’t let people railroad you when you have a hunch that you know better or it doesn’t feel right.
Jack had his feeding tube removed a few weeks ago, which was not ideal. Jack’s appetite waxes & wanes all due to Dravet & medications, but he wanted it out. Being 20 years old & strong as an ox, there was no way we could make him keep it in, this was my resistance in him getting a feeding tube years ago because he’s going to take it out if medical professionals don’t. We simply do the best we can with him & pray for help, daily. Jack’s blood pressure got really low when he had Covid because he wasn’t eating or drinking properly & the feeding tube would of been very beneficial to him at that time. Otherwise, his health has been great & his attitude marvelous.
What we are having an extreme problem with is his sleep. Jack is not sleeping normally…again. Dravet patients have a very hard time getting solid sleep, a lot of times it’s from seizure activity, but in this particular case with Jack, it’s from excitement we think. First, it was the anticipation of watching the fireworks on the 4th, now it is the excitement over his birthday that is August 2, which brings me to the title of this blog That Clown!. Jack wanted to have his birthday at the bowling alley this year, but I talked him out of it with the promise of a clown. I thought this would be a fun, different experience for Jack especially given what he went through last year & into this year. Jack was all for that, very happy about a clown coming to our house, but like with everything else, Jack has gotten so worked up into a frenzy about the clown coming, he has made me hate the thought of celebrating his birthday & the clown, too! I made the unfortunate mistake of telling him who the clown was in which he looked her up on Facebook & started calling her relentlessly. She called me one morning very early 7am & said that Jack had called her all night long & at 5am & asked that I talk with him. I had to tell him if he called “that clown” again, she said she wasn’t coming to his party. If this ain’t a Seinfeld episode, I don’t know what is! The other unfortunate circumstance of this birthday is “that clown” has to come at 10am, he won’t sleep at all that day. While I am thrilled to be able to celebrate Jack’s birthday after the medical issues he has had, I am wanting this day to hurry up & arrive & pass because of the sleep issues he is having worried about “that clown” & that’s exactly what he calls her. He wakes up talking about her & goes to bed talking about her& what gifts he is going to be receiving. Honest to goodness, we have been working on a birthday list since March! This is his current sleep schedule that has ruined my life: Nap from 8pm-11:30pm, sleep from 2am-5am, he comes & wakes me up at 5am & stays up til 9:30am, sleeps from 9:30am-1pm like a freaking log. One may say “just wake him”, there is no waking Jack. When he sleeps, a stick of dynamite can’t rouse him. He sleeps in segments now & so do I. I am beyond sick of it. It’s so incredibly hard to do life sleeping on such short timeframes day in & day out. Jack has zero understanding of this & it seems like the more I talk to him about it, the worse he gets.
And while life is tough right now without adequate sleep, I do know how fortunate we are to have Jack, but it’s really hard to deal with & trying to process all these Dixie Lee pea orders, too can be nerve wracking! 🤣🤣🤣 If you’re not from our area, Dixie Lee peas are the hottest ticket in town, we even have a whole waitlist for them that is pages long! If any of you have any leads on a clown that would be available August 2 anytime later than 10am, please let me know…there might be Dixie Lee peas in the deal for you! 🤡🤡🤡
When Jack entered the hospital December 13, 2021 for what we thought was going to be a simple operation for g-tube placement, our lives quickly got turned upside down within hours when Jack was placed on a ventilator. Lee & I waited for days praying for a rapid change in Jack’s condition, when that didn’t happen, we were lost. The days turned into weeks, the weeks turned into months. We never would of guessed what was supposed to be a three day tops ordeal end up being three months! Richmond County (the county we reside in case you’re not familiar with), is small. It’s kind of like the sitcom Cheers where everybody knows your name. Our little town of Ellerbe has only one stoplight & we love that! Our county is full of loving, caring friends that would do anything for a neighbor. Where Jack was in the hospital, it’s not so little. Located in Chapel Hill, NC, it’s a major city that is surrounded by other major city’s. After nearly two weeks of Jack being at the hospital, Lee & I became the welcoming committee for UNC for Richmond County residents. Honest to goodness, it seemed like everyday there was a post on Facebook asking for prayers for a fellow friend who was at UNC, we would run into their families in the halls, the elevator, bumped into them in the cafeteria while they were passing the time while sitting with a loved one. With most of them, we developed a connection-it was hard not to. I would look forward to running into a familiar face most days because things were so isolating for us. That was also around the time we developed Covid, after my five day quarantine, I went back & then Lee was out for weeks leaving me up there alone a lot of time because of the severity of the last Covid wave. This is when I really anticipated seeing local friends. It’s amazing how little a big town can really be sometimes. We could relate with one another, understand the hurt & pain, distract the other with small talk, & pray for one another. There were many connections made.
A friend gave me a book while Jack was hospitalized that I have become to rely on, Red Sea Rules. One of the “rules” says that you are exactly where God wants you to be. That quote has been a strong reminder to me since reading it of how true that statement is. I chant it often. As bad as Jack’s illness was, I was reminded of this during his tenure & thankful to have had that lesson brought to me. People were so kind & caring during his sickness. Sending him wheelbarrows full of cards, stuffed animals, games, gift cards, and so many people & groups helped us with expenses. Since being home, the generosity of friends has continued. Lee & I eat lunch out frequently since it’s our only time together without interruptions. When we go to pay, we find out our tab has been paid often times. We are truly blessed to live in such a fine community surrounded by wonderful family & friends. I always say it, but I would not want to live anywhere else. So a big thank you to all who supported us in prayer, love, & gifts throughout Jack’s journey.
Unfortunately, not all that go through the doors of the hospital return home. Without going into specific details, this has been a hard pill to swallow given the closeness of our relationships. Knowing the intense & critical struggle Jack went through & many local friends who went through similar fights, we were all rooting for one another, we felt each other’s pain, but Jack came out on the other side. I have been so saddened that all were not as fortunate as Jack. The moments I have of guilt are strong as I think about those that didn’t make it, but I also know that was the fate of each. It has been a year ago to the day as I write this blog that Jack was in the hospital with pneumonia, we were there almost two weeks & I thought that was tough. Jack was very hard to deal with then once he got over the worse part of the pneumonia. He didn’t want the IV’s, oxygen in, didn’t want to take his medications, didn’t want to be in the hospital. He tried on multiple occasions yanking everything out. It took being hard on him telling him if he didn’t do what they wanted, he would die. That helped the situation. As I reflect back over the last year & a half of Jack’s life, I honestly think he had been sick for that long & we didn’t know it. The lack of eating, drinking & life is a big indicator for me. After receiving months of antibiotics, we pray he is healed from that nasty pneumonia.
Jack’s current status is great! He is still eating excellent! My last Mother’s Day was spent in the hospital with him, this years was way different. Jack got me his traditional gift he gives me-Pepsi, popcorn & Reese Cups. When I indulge, this is it. Coleman came in for the day with flowers, & Ava blessed me with the sweetest words any Mother could ask for. Everyday is a blessing & I am grateful for each. Anytime Jack sneezes or coughs, we get worried. His left lung when we left the hospital back in March still had damage, so we are always worried about him getting sick again & not being able to fight it off with two healthy lungs. I’ve enjoyed being able to take Jack to the dentist willingly, out to eat & to stores. He is much more obliging than ever, needs no prodding any more. He will walk up to us & randomly say “I love you”. Now his sleep is still aggravating as all get-out & he can be, too, but we have full & overflowing hearts so it kind of evens out.
As stated in many other blogs, I despise writing, always have. It takes up too much time & I have never been one to like anything pertaining to school-type stuff (and blogging is school-type stuff to me). It takes me a long time to write, mainly because I don’t have a lot of extra time. My extra time right now goes to making chocolate covered strawberries, bills, sorting papers, & the kids. Our whole house is nothing but boxes & papers, I’m about to go insane. When I wrote the above paragraphs, things were good. Ever been feeling really good & happy & then something horrible happens & you are down & out. This is when the party ended: Thursday, May 11, a few of our employees were having a really bad day, so Ava & I took them to eat after work. Always thinking about Jack & his need for takeout, I asked him what he wanted & of course the list was a mile long. I ordered the food, brought it in & the restaurant didn’t send the right food. Jack got angry, ran to his room, slams down the dog gate, & slams his door, too. This is when our bubble burst. Nothing & I mean nothing can bring us down like behavioral outbursts do, these outbursts affect me more than they do Lee. We thought we had that licked, but we were proven wrong. All the other stuff that Jack goes through is dealable, violence is not. I am now back to feeling jumpy at every little noise thinking it’s Jack getting violent. Back to not being on a cloud. Back to being nervous about leaving the house & him in the care of another. When he gets like this, I want to be a crazy person, but I can’t. I want to tell him how foolish he is being over food, storm into his room & be the warden, but I can’t. I have to be meek & mild so that a war will not start, pet him for acting ridiculous, we all must remain calm to avoid further, possibly more violent attacks. Not only is this a worry, Jack is now wanting the feeding tube out. He is pitching a fit for it to come out, which is why I hesitated in getting it to start with. It has become a problem. We haven’t used it at all since he has been home other than flushing it daily, but it was there as a backup should Jack get into a bad cycle of not eat and/or drinking.
This blog did a whole Jekyll & Hyde situation! Jack ended up apologizing which he usually does. Is that commendable, yes, but to me it doesn’t matter because the behaviors always continue even though I know technically he can not help this due to his medical condition. Dravet is the disease of all the diseases in my opinion. Every single cell, mechanism, thought, every single aspect of their lives & the people that care for them are affected. It’s the cruelest of the cruel. I know of no other disorder that robs patients of not being able to go to events, be active, or get excited all because of seizures and/or behavioral issues. My hopes & dreams on taking a family vacation this fall were crushed in 30 seconds after his outburst. Life will go on. It will be hard as it has always been, but we each are used to it. Our prayers that smooth sailing would be in our favor for once were not yet answered. I will just chant harder, “I am right where God wants me to be”.
One of my favorite songs I learned during my youth group days inspired the title of this blog, here’s a link if you’d like to listen. https://youtu.be/w3Wa2L347fQ
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”!
We made it! Jack is finally getting to go home after nearly three months, five more days & he would have made the three month mark. I did not know what to expect with all the things that was wrong with Jack, but I knew when our complete faith was in the Lord, Jack would be okay. To recap all of his issues in case you’re new to my blogs:
After 100’s of labs, chest X-rays, consults with nearly every type of doctor, seizures, sleepless nights, blood clots all throughout his body, a vent, a self-extubation, four extubations & intubations, a trach, a GI bleed, taking the trach out, countless bags of blood & plasma, crazy lab work, a collapsed lung, going from complete tube feeds to now all regular food, a tremendous bed sore on his bum, staff medication mistakes causing issues, & stealing the hearts of all the staff, he has made it! The road was hard. It was particularly difficult due to Covid. Lee getting it so severely, I had it but not bad at all but I am still suffering with a the most terrible thing I can think of to smell-cigarettes! It is like living in the 80’s again! All day long I smell cigs as a result of Covid. As a child, I was tormented by cigarette smoke, have always hated it & complained about it (my parents automatically caused me to be a complainer every time they lit up). My Mama & her girlfriends or sisters would sit around the table smoking, drinking coffee & Cold Duck all hours of the night, it kilt me! Daddy would smoke with all the windows rolled up while I lay gasping for fresh air. Now I am plagued with my nemesis! The things we witnessed Jack go through are images we will never forget. The unanswered questions, doctors not knowing what was wrong with Jack on many occasions. doctors saying Jack would be vent dependent for the rest of his life, being torn away from my family, our dog Teddy, the sun, the moon , the stars. For days on end, I never went outside. I started to think rickets was in my future. The terrible food choices, the isolation because I didn’t want anyone coming in giving Jack Covid, the horrific sleep arrangements, the noise of the PICU, transferring to another hospital for rehab, it was all such a blur of time & also a long span of time in the same breath.
Now that Jack has graduated from rehab, he will be returning home. Up until today, he has been very kind & understanding about all that has taken place. Jack missed Christmas which he has always gone nuts over, hasn’t mentioned it once during his stay. He is forgetting a chunk of time. His Santa gifts are setup in his room for when he returns. Today with Mama & me, he has been antsy, sassy & irritable. He got angry with me about his feeding tube. This is what has caused such a delay in Jack’s care & the decline of his health. He got angry when I told him we were going to have to go to back to the main hospital to check his gtube. He demanded for it to come out. If you’ve read any of my blogs, y’all know Jack is difficult, is a picker & can be violent. If he doesn’t keep this tube, he will go through this same type of illness again & again until he can’t. I don’t know how we will make it with the gtube in place other than prayers. Jack is apt to pull it out completely. It is such a helpful tool to have with someone like Jack . If he gets in a non-eating cycle, we can tube feed him, hydrate him, meds go in it also so he doesn’t have to swallow pills any more & we can give the constipation meds in it . It is a win-win, but not in his eyes.
There are going to be more doctors appointments now & y’all know Jack doesn’t willingly go to appointments. As he gets stronger, it is also a worry of Lee’s & myself that he will get angrier over the new stuff & show-out. Now that we have beat one obstacle the size of a football field, we have another giant one to feat. This is one is going to take the same amount of faith & prayers. What sustained me & gave me strength on the countless nights I sat in Jack’s PICU room & cried my eyeballs out, was the prayers from family & friends. I wanted to lay down & die-truly! But I didn’t, nor did Jack. He hasn’t come this far to go back through it again. I’m asking for prayers once again from y’all for Jack to be accepting of his gtube & never be violent again. Thank you each that lifted us up through this whole ordeal, sent gifts, cards, monetary assistance, donating blood, offers to help at the Berry Patch, everything! We need our prayer warriors to continue to help us fight for Jack. Jack is really going to miss the luxuries of room service. There were times he would order five plates, those poor food & nutrition employees. This might be a ploy to get back to room service! You know, Hugh Hefner will do whatever it takes to get his way! 🤣🤣🤣 Thank you all! 💜💜💜
It’s been a while since I’ve blogged, mainly because I am employee of the hospitals & of Jack Berry. Now that Jack is awake & off sedation medications & off the vent, I work for him & UNC. You’d think I would have time to blog, read, nap, but no I do not nor does anyone else that stays with Jack. We are constantly changing his socks, bedding, gown, feeding him, boosting him up, rubbing feet with lotion, fetching this or that. It’s unbelievable. But, what an incredible whirlwind we have all been through over the last two months. From Jack being in critical care for nearly seven weeks, to Lee ending up in the hospital himself with Covid (Jack’s issues were NOT Covid), medication mistakes causing Jack to have tons of seizures, to learning the medical team thinking Jack would be vent dependent (which he isn’t PTL), three surgeries, tons of blood transfusions, to him taking his first steps last week, to him eating puréed foods & finally getting to drink fluids, to him learning to use his voice with the trach in, & so much in between. For those that don’t follow our updates on Facebook, the good news is that Jack was able to go to a regular floor room in the Children’s Hospital. We miss the staff tremendously from the PICU, after being there for over two months, they became like family. Jack’s room was a welcome zone for all once he learned how to use his voice. The staff had never heard Jack talk & I think they thought he could not, so when they heard him, all stopped in to chat! Jack has been without the vent for a week now which is amazing. He is not on any oxygen except while sleeping & that’s to keep the trach opening moist. Jack surely has come a long way. We never imagined he would be doing so well after being in such an acute condition, however, we have reached our boiling point with this UNC Healthcare!
When Jack was coming off of the sedation medications, he was in withdrawals from being on the sedation meds big time. The team quickly learned what I had been saying the whole time was correct. Jack is very sensitive to any changes & weans have to go extremely slow. They put him back on everything full-strength only to start the weaning process yet again extremely slow which was hell on both him & myself. That process is too difficult to describe in writing other than just simply saying it was pure hell. He didn’t sleep for days on end, like five days straight & starting having seizures which was expected during the wean. After he started settling down from the wean, seizures stopped & he got back to his baseline. A few days later, the seizures started back with a vengeance. I went home & left Lee in charge for two nights, when I returned to the hospital that day, Jack had a strange seizure. I had not seen him have that type of seizure in nearly 10 years. It was prolonged & lasted for like four hours. It bothered me. My nerves were tore all to pieces worried that now on top of everything else Jack had going on, his seizure medication regimen needed to be changed. I consulted with his neurologist & we devised a plan. As meds were given that night after the prolonged seizure, it didn’t sit right with me. A few hours later it hit me, I didn’t see the nurse give him one of his medications, Stiripentol. He’s been on this one for 10 years & it’s the only medication designed just for Dravet, it stopped the hours long seizures that we used to have to take Jack to the ER to help break him out of on a routine basis. When I questioned her about it, she said she had not given it the last three nights. Come to find out, it was the last five days & nights! An abrupt stop in any type of seizure medication can be disastrous, which it was.
A. I had consulted with his neurologist to change medications.
B. The team kept saying Jack was experiencing ICU delirium & gave medications to help assist with that. Medications that he was not previously on, on top of everything else he was already on.
C. I was about to change his medications unnecessarily which could of been very bad for Jack with even more side effects than he already has from current meds.
I know I was dubbed a “Karen” in the PICU. Not only did I cut up about withholding Jack’s seizure medication, I cut up about the PICU waiting room being closed. It was closed when Jack went in December 13 & remained that way. So “Karen” contacted the compliance officer of the hospital because I was tried of crying in a busy hallway with people looking at me & sitting on a hard tail wooden bench-none of us PICU parents had any privacy at all. It was open soon after my emails. I never thought I’d have to email her yet again complaining about the huge mistake in Jack not getting his seizure medications. Now an investigation has been opened. Within two days of Jack being in a regular room, Lee found yet another medication mistake. One of Jack’s meds was found under the bed undispensed from the previous day. This place is on my last nerve! After meeting with nurses, charge nurses & doctors about this medication foolishness, they look at us like we are the idiots. As you can imagine, we are ticked! Another email & more phone calls will be placed. Jack did have a seizure Saturday afternoon while Lee was here. Was it a result of not giving meds, I don’t know.
I am so tried of everything. I can’t focus on Jack’s health for having to stay on top of every move these medical people make. The carelessness they have exhibited for a person with a chronic, life-threatening condition has shocked me. A hospital is a place to heal, but they will also kill a body! Let this be a lesson to anyone that has a loved one in the hospital, don’t ever, ever let them not have someone there to advocate. There are so many hands involved in care for a patient that it is literally like a 13 year olds slumber party game of telephone. Rumors get started here about the patient & it won’t be no such thing. I could write about that as well but I won’t, y’all have heard enough griping.
Another thing we are having to fight is Jack’s visitors. When Jack was in the PICU, his visitors were unlimited. Now that he is on the regular floor, they are saying Jack can only have the same three visitors the whole time he is here. Lee has gone round & round with these nuts. This is communism. Don’t give me this Covid-safety crap either. I have no idea where the crowd of doctors, nurses, CNA’s, respiratory, OT, PT, cafeteria employees & etc go when they leave this hospital, hell, some are even treating Covid patients & treating Jack as well. They are not taking into account the length of time we have been here & how much attention Jack needs. Jack is liable to start yanking his g-tube or trach out at any moment like he tried to Saturday after his seizure. Lee, Mama, Jodie, Coleman, Lee’s aunt Vickie & myself were all taking turns in the PICU because it is a lot to be in a room 24 hours a day. You don’t get adequate sleep due to interruptions & an uncomfortable sleeping situation. We also have a child at home & a business. They surely don’t mind me going down to the cafeteria or Starbucks here with tons of people standing on top of one another & then coming back into the room. Again, just another example of how higher-ups are using Covid to divide our society & make even bigger problems. Best believe if their loved one was in the hospital, the rules would be broken. They didn’t come running when Jack had his last seizure. No one knew it but Lee who was in here with him, there is no type of equipment to alert the staff of a seizure. Jack needs 24/7 care & this is NOT the place to get it that’s for sure. I know I sound disgruntled, it’s because I am & have every right to be. Jack can’t make proper headway if he is having seizures. Do not let personnel tell you your loved one can’t have visitors, fight it-it is against the law! Show your tail!
In closing, I first want to thank you all for the cards, concerns, gifts for Jack, extra love, & the many, many prayers. Prayer has been what has brought us through this & the support of our family. Without both, I would of never have made it. There were multiple nights when Jack was crashing, that I had terrible, awful thoughts. I honestly wanted to vanish from this earth. Which is yet another example of what Covid has done to people. Those times were during the peak of Omnicron & I wouldn’t let anyone come in for fear of exposing Jack to Covid. Had Covid not been in existence, I could of had proper support from family & not felt so lonely & sad. If y’all can help us pray that the medical people will see just how necessary it is for Jack to have more than three visitors while he’s a patient on the regular floor, that Jack can get decannulated (trach out), & Jack can get stronger in the next two weeks to go home instead of rehab. Rehab has been mentioned, but Jack does not want to go. Ideally, as long as he can walk to the bathroom, I would rather bring him home & have people come in to work with him. We are tired, he is tired of all this stuff & wants to get back to his life. Ava & Teddy are broken-hearted. No to mention Lee & I never see each other. Today, we met at the gas station in Southern Pines for ten minutes as he was headed home & I was headed to the hospital just for a quick look at one another. This has honestly been the hardest road I’ve ever hoed. Jack is headed towards being a hospital patient for his third month. Help us pray that he gets to go home safely before he hits that milestone. Thank you all again! 💜💜💜
I have embarked on the hardest days of my life since December 2021 & it is now February 1, 2022. Being the main caretaker for Jack, I have seen him during all of his health crises, this current one being the most difficult of all. Through all of the drops in oxygen, blood pressure, heart rates, the self-extubation, multiple intubations & extubations throughout December & January, which all made me want to rip my heart out, these moments right here right now at the hospital with Jack have proven to be the most difficult. Watching his computer screen monitor for his oxygen level has given me a permanent crick in my neck. I watch it like someone’s life depends on it & it does, thinking of how 100 is perfect for oxygen saturation & 99, 98, 97, 96 is great, but only a few more points to go & Jack gets into dangerous territory. Two days ago he had a particularly bad day for oxygen. He hovered around 90, 91 all day long. As he got something called a cough-assist treatment, it aggravated his cough something awful. He couldn’t stop coughing & had so many secretions. His oxygen dropped down to 86 as respiratory was in here suctioning him out, then it was 76. Jack got scared & reached out for me in tears. They got him stable quickly but it was so scary.
Most of you know Lee contracted Covid while home from a friend. He hasn’t been able to be at the hospital with us in over three weeks, Jack’s care has been mainly on me. Mama came up for a few days to keep me company which I desperately needed, Jodie & Coleman have stayed some nights as well. I absolutely hate putting stress on other people so I despise asking for help, for their benefit, not mine & to limit Jack’s Covid exposure as well. People want to help but uprooting their lives isn’t fair. While Jack was intubated, I made the statement that when he woke up, it was going to be on & boy has it ever been. The sleep deprivation was real for me when Jack was sedated because the nurses & respiratory staff were in the room constantly making noise & talking, which was fine by the way, they were working on saving our sons life, but I was tired nonetheless. When Jack was first admitted to UNC, he had a great big spacious room. After about a month, they tell us we have to move to another room on the same unit. What they eluded from the story was the room was a baby room, literally. It was a room for a crib, but they decided to put an almost six foot tall guy in there. The foot of the bed was only inches from the door. Every time someone walked by, they bumped the bed. Some of y’all saw the video of Mama trying to get into the air mattress on Facebook, if not I’ll post below-hilarious! That room was such a pain in the you-know-what! Plus, some idiot, I know it was a man, designed the room that when you walk in, the automatic sink would run every.single.time someone came in or out! That designer needs to be horse-whipped!
A week ago they moved us to a larger room on the same unit. There are 20 rooms in the PICU, we’ve had three so far. After getting to the new room, the team started weaning Jack down from his final sedation medication & to call it rough would be an understatement. He fidgeted something awful, moved from side to side every 10 seconds. Wanted the blankets on & literally 30 seconds later, wanted them off & so-on. Kicked all the pillows off the bed when the nurses turned him, only to want them back on after he did it. This team has never dealt with a Dravet patient before, the wean was too fast for Jack’s body. They have no idea about the sensitivities DS patients have. Then Jack started having seizures. He has not had a seizure in six months. Jack is not addicted to the sedation meds they had him on, he was just on them for so long that his body got use to having them. He wouldn’t know what a sedation medication was if they asked him about it. The problems he was having was due to withdrawals from the sedation meds. The symptoms Jack had was agitation, delirium, he did not sleep for four straight days/nights-zilch, fast heart rate, high blood pressure, constant moving, seizures, increased coughing, fever, & excess secretions. It was truly a nightmare. The team was concerned with me because I had been here so long & it was so difficult to watch Jack like that, plus it was physically exhausting as he wanted me bedside at all times. I know Jack has been scared & still is. The poor child had no idea why he was going to the hospital any way. The day he left home in the ambulance December 13, we told him we were worried about him not eating & that’s why he was there. After the transfer from our local hospital to UNC where we are now, he went into respiratory distress the moment he arrived & was quickly intubated. So now he has two devices in him, the g-tube in his belly & now a trach in his neck to assist with breathing. The trach is the absolute hardest pill for Jack & myself to swallow. It has taken his voice. My heart breaks every single time I look at Facebook memories of Jack talking, singing, kidding around. It totally shatters. I have been such a mess since he has gotten the trach. He can’t wrap his head around why he can’t speak, why he can’t get out of bed, why he can’t eat & drink, why people keep coming in his room & shoving a tube down his throat saying “good cough, buddy”. We hear this dozens of times a day. The coughing is still there, the mucous is still there. Will this crap ever stop producing! I simply do not understand where it all is coming from. The staff was concerned about me because I hadn’t left. I only leaving to go to the bathroom, I couldn’t leave Jack. He looked for me every second of time, even when I was there. Lee would try to come up to help but Covid has done a number on him & he was too tired to come. This is work being here with Jack. Again, I sure hope the creator of this whole entire man-made, division-causing evilness is brought to justice soon. If it weren’t for the virus man-created, I could have plenty of help with Jack. Y’all know Jack is no ordinary patient. He requires attention at all times, especially now with these devices in him.
I get very emotional all throughout the day at almost anything. When Jack wants to hold my hand, I know it’s because he is scared. He never has wanted to do that before. I cry & cry at that sweet gesture. As Jack is moving into a lesser state of withdrawals, we are working on trying to get his body adjusted to not being on the ventilator. He has to do what they call trach collar trials. This is where is he only hooked up to oxygen & he is breathing on his own. He later gets hooked back up to the vent so he won’t wear his lungs down & get overly tired which he is done several times. And while this crisis has afforded me the luxury of hanging out with Coleman, I have missed Ava tremendously. I know she understands the importance of me being at the hospital, but it doesn’t make it any easier. Children need their Mama & Daddy & to be without your Mama for an extended period of time is depressing to her I know, it sure is for me with my Mama. There were two things I could count on doing every single night when I lived at home-calling my Aunt Dot & calling my Mama. We discussed politics, this Covid fiasco, what Shawn looked like on QVC, silly things. Since being a live-in hospital caretaker, I have stopped that because Jack is so needy. One thing about isolation is, the longer you are isolated, the less you want to become unisolated. It’s really hard for me to find the energy to talk to people on the phone. I stay such a mess. Jack also has a bed sore on his backside that looked terrible, but it is healing & improving since changing his actual bed to a heated sand bed that moves & shakes all the time. The bed itself is so loud but I appreciate the noise, it’s kind of like white noise to drown out the hallway racket which is crazy loud, they sound like they are honky-tonking all night & early morning long. I swear the staff sounds like they have been partying with Toby Keith at a dive bar slamming beers down & hooping & hollering until shift change at 7am! Then to watch Jack in a diaper has been mind-blowing to me as well. Tears me up every time he is changed.
With all of that being said, Jack is improving in very small measures. At the moment, he is tolerating the trach & g-tube with amazing grace, especially to not understand it all, have developmental delays, & be tired from laying in a bed for nearly two months. There are moments that I will never forget in this hospital. The night Jack received four units of blood & four bags of plasma with the staff working emergently on him, all the nights of emergent intubations, the scary moments of destat’s of oxygen, the moments of Jack crying in fear, the moments of seeing your own children cry over their sibling, watching my own Mama walk out in pure tears after staying with Jack alone overnight. I pray these etched memories are replaced with new, beloved memories of Jack’s accomplishments. So many are praying for Jack & we are ever so thankful, our prayer requests for Jack at this time are for his lungs to get stronger so he can come off the vent permanently, that Jack can soon start eating & drinking in order to get his body healthier & stronger in order to beat this thing, & for the seizures to stop. Jack can not go to rehab (which will be required) in-house at Chapel Hill unless he is off the vent. Y’all help us pray that Jack can transition off the vent & keep his oxygen levels up & secretions low. You each have made a difference in our lives through concern, acts of kindness & prayers. We thank you & thank God for getting us this far. 💜💜💜
Fortunately, I’ve never been held captive by a psychopath unless you count Lee 🤣 , but I am beginning to understand what that might feel like for a person. All of mine & Jack’s days & nights are the same. He lies in that bed day & night, restrained now due to extubating himself the other morning. He is mostly sedated, waking several times an hour holding his hands up wanting me to untie him then back to sleep. I imagine this is what it must be like for someone that has been kidnapped. Not knowing what time it is, what day of the week it is (even I am struggling with that), not knowing what happened, & maybe even wondering if he will lay in that bed forever. Jack has so many different people in & out everyday of his room, I know he has got to be in a chronic state of questioning who are all these people. None are ever the same. He is responsive to questions by shaking his head yes or no. I try explaining things to him but I know he is confused. He has a look on his face that tells me that. Every single day Jack has been in the hospital, it has been a day of events. One thing gets corrected, then something else breaks. The hospital is holding me captive, too. Due to the uprise in Covid & Jack’s lung condition, we are keeping visitors to a minimum, but I have to wonder if that should even matter when the CDC has changed the quarantine requirements, plus, medical people can come to work if they test positive & have been vaccinated. This Covid has ruint everything & especially has ruined people’s mental health & those that are in the hospital suffering from lack of human touch & relationships. I can not wait for the day that the creator(s) & the person(s) of this mess is brought to justice. A few days ago, I decided to get a room at the SECU House which is referral housing for caregivers of patients. I finally relented control which is so very hard for me to do being that I have taken care of Jack for 20 years each & everyday. It was a necessity but I feel extreme guilt in doing so. I worry about him waking up & not seeing a familiar face. I worry that he won’t be cared for & watched over like I would do. But there is absolutely no way I could function staying in the room with Jack for consecutive days because it stays so noisy & busy in not only the room, but right in front of his room as well. I have never stayed alone anywhere. I don’t like it. The room is nice enough, but it’s empty just like my soul feels. There’s nothing but a bed, tv & bathroom which is all a person needs, but it is a struggle for me to find comfort there when my child is suffering three miles down the road from me. No sleep that I get is restful, much like Jack’s. All my dreams revolve around him & they are all weird, taunting nightmares.
If things go as planned, Jack will be having two procedures Wednesday. One to place his g-tube, the other is to place a trach to help wean him from the vent successfully since he has failed doing so three times. Dubbed Houdini in the PICU, Jack extubated himself completely a few nights ago. Of course this was my first night spent away from him & I immediately felt like a complete louse for leaving. He then had to go through the whole intubation for a fifth time in a little less than a month. Had I been there, I could of prevented that. Pulmonary took some samples from Jack’s lungs a few days ago, the samples have to have time to grow so the doctors can see what they are dealing with which takes a couple of days. I am still praying that the Lord will grant us with a miracle & the pulmonary team will come back & say “we’ve found the issue in Jack’s lungs & he will not have to have a trach”. The g-tube is going to be a hard enough acceptance with Jack, the trach is going to be a whole other mountain to climb.
It’s been a month now. When I say that out loud, it truly blows my mind. As we all know there are only 12 months in a year & Jack has been a patient in the hospital for a whole month, that seems wild to me. It has flown by but it hasn’t. This is our home for now. It makes me question everything I’ve done for Jack’s care. Should I have done things differently when Jack was a patient back in May with pneumonia? It really makes me physically sick to see him like this & what all he has had to endure. I’m nervous about the trach procedure more than anything. I’ve seen Jack struggle to breathe too many times now to know he’s not able to make it without it. Watching him be intubated in emergency situations kills me & I’ve seen it all four times, missed the fifth one due to me being away that first night. Jack’s developmental delays makes this all even worse. His understanding when he finally gets coherent will be very difficult on him & us all. We are still trying to find out why he’s bleeding, where it’s coming from & why does his hemoglobin keep dropping. It’s just a lot & not anything I ever thought Jack would have to go through.
I’ve been reduced to looking at my phone nearly all day. I can’t concentrate enough to read, so your Facebook posts keep me from going crazy, somewhat. I’ve started watching the Real Housewives of Miami thanks to a friends suggestion but I am not keen on watching a show on something the size of a deck of cards. If I didn’t have a double chin before, one is certainly growing now & not from this awful food either, from bending my head over! The food started out pretty good, but I guess since the new variant of Covid has reared, a lot are out of work. This mess is the pits now. Throwing this term back back to the 80’s, I mean like totally gag me with a spoon!
People say DoorDash or GrubHub, but they too & the restaurants are short-staffed so they are really slow. I eat when Jack is comfortable, stable & I have met with everyone that needs to be met with. And too, paying $30 for a meal is crazy especially if it’s not fit to eat either! Y’all know food is a major part of my life, so I’m suffering lol. Honestly, I don’t have much of an appetite which is a good thing up here.
As I sit here in my empty room completing this writing, my heart is aching for Jack & for the family at home & Teddy. I miss everyone, miss our business which I haven’t been to in weeks, & miss life. I’m not mentally prepared for Jack’s upcoming lifestyle changes, but that’s what life does, throws you curveballs at any given moment. We will adjust somehow. Again if anyone wants to know what they can do for us, give blood! Jack has needed four transfusions during this stay, supply’s are very low, the hospitals are all full & many people need blood. Y’all continue praying for Jack to get stronger & for answers to be found.