The Hardest Road

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! 💜💜💜

Author: dravetsyndromeblog

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

4 thoughts on “The Hardest Road”

  1. Girl. There’s so much I could say about this subject. But suffice it to say you’re on the right track. He will heal faster at home. We had to traverse Boston traffic to be discharged, which is stop and go and often dangerous so Teddy had to be able to sit up straight for forty five minutes. THe second we hit that goal we bailed. He’s FAR safer at your house where seizures aren’t missed, medicine is never missed and you can get real and productive sleep to deal with how much encouragement he’s gonna need each day. God love the Acute work Mass General does saving my Teddy’s life but something long term puts our kids in danger. Like you last February when we were in for a month I was expected to be awake during every shift. I’m sorry dear nurses, if you all are allowed to sleep so can I. Two very major med mistakes were made and one caused a five day psychosis episode when psychosis was a documented reaction for poor Ted. I’m dead tired of hearing because COVID. Sorry but I’ve worked tirelessly to keep Ted alive and I’m not losing his cus y’all are tired. I mean NO disrespect for how tired nurses truly are right now but you don’t know tired till you’re 32 years into Dravet as a single Momma. And I don’t make BS mistakes. As always sending our love and prayers for you all. Love Michele and Ted

    Liked by 1 person

  2. You are so right about all of this! I have been labeled a Karen as well and I do not care! You can only go through so much until you’ve just had enough! Ten years for me and I’m done with taking all the medicines! I’m taking my life back and if it wasn’t for Jacks entire family, they could have taken his life! This infuriates me so bad! Y’all are always in my prayers! Good for you Karen! Keep up the good work!

    Liked by 1 person

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