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. 💜💜💜