KILL BILL VOL. 4

unnamedIf you’re reading this, hopefully you have also seen Quentin Tarantino’s Kill Bill so you don’t think I’m a psychopath (and maybe you will anyway–I’m not, just a mom on a mission). If you haven’t seen it, let’s just say that Uma Thurman is a badass rise-from-the ashes and take no nonsense kind of gal. In the movies (Kill Bill Vol. 1-3), Bill tries and thinks he succeeds in killing Uma’a character, but she comes back smarter, more determined, and stronger than ever! Kill Bill Vol. 4 doesn’t stray from any of these ideals so I hope you enjoy my way of turning a terrible situation into something I can both laugh at and learn from. It is hard to separate myself from the anger and pain that I felt during this event because those feelings haven’t gone away. But I am choosing to take control of the story by talking about it and also laughing at it so the villain (clearly Bill) no longer holds any power of me.

Throughout Jack’s first six months of hospitalizations, he had over 10 EEGs because his epilepsy etiology was such a mystery. I became pretty comfortable taking care of a baby with dozens of wires + a heavy box that connected them coming out of his head. After the first 3, I had a system after the take off. The sticky glue stuff the techs use to make the leads stay is so hard to get out of hair and off the face! The EEGs techs were always so wonderful and would take their time trying to get the leads and glue off Jack’s head and out of his hair. It took a little while as you can imagine, especially since Jack did have some hair and his EEGs always stayed on 48-72 hours. The process was clear: when neuro said that the EEG could come off and put the order in, the nurse would call down to the EEG techs. The EEGs techs ALWAYS take off the EEG (ya know, because it’s literally their job). Unfortunately, this is where you meet Bill.

During Jack’s worst hospitalization ever, he was in the PICU and had a nurse named Bill. We were likely going to leave PICU and move to the neuro floor on this particular day and we were over the moon. Unless Jack needed help breathing, I hated being in PICU because the nurses were not as familiar with seizures as the neuro nurses were. Even though Jack was still having seizures, it was going to be a good day because we were leaving PICU!! –>Enter Bill. WORST DAY AND WORST MOM FAIL EVER! Jack’s team said the EEG could come off and then we could move to the floor. Woo Hoo! Except, the next thing I know Bill comes in the room in a huff and says that he is going to take Jack’s EEG off because he didn’t want to wait on the EEG team. I was still pretty new in the game, but I had a bad feeling and didn’t agree with Bill. I really thought he should wait for the tech, but I’m not a medical professional, just a scared mama, so I second guessed myself. I let it happen and I don’t know if I will ever forgive myself. In 30 seconds flat Bill ripped off an EEG that had been on my SEIZING infant son for a full 3 days! If your child has ever had an EEG then you probably want to throw up because I know did. My heart broke and fell to pieces on the floor; that has to be the reason that I didn’t speak up. I mean it happened so fast, but I should have tackled Bill…done anything to stop it!

Let me set the scene a little better. Since Jack was leaving PICU, his big sister had come to the hospital with their grandparents for a special visit. The last time Jack’s big sister had seen us, it was an emergency and Jack was being rushed to the hospital in status. Rowan was just 3.5 at the time so we really want to make this visit less frightening for her. Thus, while Bill was ripping the EEG off my son’s head, my husband was downstairs in the cafeteria taking his turn visiting with Rowan. The only saving grace is that I did not leave Jack’s side, but had decided my husband and I should take shifts visiting Rowan so Jack always had a watchful eye on him. I was utterly alone when this happened and have never felt so powerless. I silently watched someone who was supposed to be caring for my medically fragile infant inflict unnecessary pain on him, pain that would last for days. I stood there seething and wanting nothing more than to kill Bill. You can see the sores that Bill actions created below. IMG-7556 (1)SO I called my husband because I could barely think, speak, or function. Many a murder has been prevented on his watch (JUST KIDDING, but I am definitely the more outspoken & slightly unhinged one when it comes to our children). I was already planning where I should hide Bill’s body when my husband got back to the room and managed to calmly get us to the neuro floor while also telling Bill to stay the hell away from our son. Were we overreacting? I was still shaking and visibly upset. The second we got to Jack’s room on the neuro floor, there was a flood of nurses wondering what happened to his head. I didn’t want to talk about it. I was scared to implicate on of their own…what if caused other nurses to hate us or not want to take care of Jack? Snitches get stitches, right? Maybe this was the turning point, the defining day that made me forever want to speak out and speak out. One of the most amazing nurses urged me to tell her and I will be forever grateful that I didn’t stay silent about what happened. Before the day was over a legal representative was in our room and I realized that I wasn’t being an overprotective crazy mom, and that what happened to Jack was wrong!

Unpleasant testing is part of life with a serious medical condition. I can accept that and I can make my son endure them for the good of his health. BUT that does not mean that I have to stay silent and I hope no mama ever feels as helpless as I did above. I feel sad, ashamed, and sick about what happened to Jack. My only hope is that sharing this story will help other moms and their babies. It’s so important to remember that even when things are terrible, we still get to control our story. By sharing this I took Bill’s power away and I’ve made him into a sort of joke/lesson because it doesn’t hurt so bad when I approach it that way. Since our kiddos can’t advocate for themselves, we have to channel our own Uma Thurman ass-kicking selves so we can speak up and (metaphorically) KILL BILL.

Here’s a little EEG photo roundup for Epilepsy Awareness Month!! Sending love to all the warriors out there!

 

Epilepsy Awareness: Siblings Edition!

EVERYHTING.jpgIt’s a good thing that Jack’s big sister, Rowan, was already in love with butterflies and the color purple before he was born. These important symbols of epilepsy have sort of become staples for everything in our life. What color should we get is never a question; we always purple for epilepsy awareness. If it has a butterfly on it then we are definitely getting it (doesn’t really matter what it is)! Epilepsy Awareness is so important to our family, especially Jack’s big sister! This post is dedicated to ALL the special needs siblings out there. You are seen, loved, and so important to this world!rowan and jackI am a different mom than I was before Jack was born. I am not sure if this is better or worse for Rowan. I do know that it has been one of the most difficult parts of this journey for me and certainly one of the most difficult to talk about. Since the day Jack found himself in Egleston’s PICU, I have struggled to be the mom that both of my kids need. I had to jump all in to protect and fight for Jack. From the very beginning doctors were confused by Jack. He had a brain injury and was having seizures, but they didn’t know why they so they were throwing the kitchen sink at us. I had to be fully present every second to make sure one decision didn’t cost my newborn son his life. The mystery that was Jack only got deeper as time went on until one day we were faced with how to explain to our 4-year-old that her newborn brother was going to die. Through it all, I had a really hard time accepting how perfect Rowan was versus how sick Jack was…why was there no balance?? Of course this wasn’t Rowan’s fault, but I hurt for my sick boy and I didn’t understand how such cruel things can happen to children, to newborn babies. I wish I would have handled so much differently in the beginning, but mostly I wish I would have encouraged a relationship instead of trying to protect Rowan from Jack & protect Jack from Rowan.

Rowan Eliza is my oldest and the one who made me a mommy, and she is turning 6 in a month. She was 3.5 years old when Jack was born and she wanted a sister. When we told Ro that she was going to have a little brother, she called him baby Lucy and said he would be a girl, not accepting a thing we said as the truth. I would literally have people say, “I thought you were having a boy. Rowan told me you were having a little girl named Lucy”. My outgoing, gregarious, and incredibly empathetic little girl had her whole world turned upside down the day her brother was born. Instead of life with a new little brother, she got life with her grandparents while her mom and dad were hours away in the hospital with her new brother. There’s no way to protect your other child(ren) when a tragedy occurs. Jack was in status epilepticus and being life-fllighted, but Rowan was also along for the ride. She sat in the PICU waiting room for over 10 hours that first day and came back almost every day with her grandparents. Rowan was the first one to adapt to our new life when Jack came home from the hospital. Jack wasn’t the only baby having seizures and therapy appointments, Rowan’s baby dolls were also going through similar experiences. Her baby doll named Sunny even had an NG tube with the same tape as her Jacks. She would get competitive some days when I was taking care of Jack. She would walk by in her plastic princess heels ask how therapies my baby had today; of course, her baby doll always had a few more appointments than my baby (aka Jack) did. After the first several hospitalizations, it became obvious when were about to take Jack to CHOA. Rowan developed a stiff upper lip and would help me pack a bag because she knew we would be there a few days, never making me feel bad for leaving her.

ro jack 4

After we met with palliative care for the first time, it was suggested that we speak to a child life specialist about to approach this subject with Rowan. We did this in hospital one day with Rowan. The child life specialist gave Rowan this special bear that had a pouch where she could put messages she wanted to write to her brother or pictures she wanted to draw for him. I was so happy for this sweet little message bear and Rowan 100% rejected it. She would touch it, hold it, talk about it and every time I have tried to talk to her about that bear since, she still does not want to go there. It is so interesting! I feel like it is her own private revolt against the mito diagnosis and the “he’s going to die” inevitability that hung over our heads for so many months. It used to make me so sad because it felt like she was rejecting her brother, but now I am proud because it was her own way of protecting her brother (and herself maybe) by protesting against the stupid hospital bear. Rowan has always been Jack’s biggest cheerleader, but it is not easy for siblings to sit in doctor’s offices and therapy waiting rooms. You forget what they hear and what they are learning during phone calls with insurance, doctors, schedulers, etc. This is your life and they can’t escape it, just as we can’t. I got off a particularly upsetting phone call with neurology one time and Rowan asked me, “Mommy what is brain damage?” When she plays pretend, you will often overhear her saying that so and so had a genetic disorder, but does everything other kids do. I mean she is just the best despite all the pain and sadness has surrounded her for much of the past few years. Rowan’s daddy and I missed her 4th birthday because Jack was in the hospital and doing really poorly. She and my mom sat tried to eat the Barbie cake (see photo) and celebrate through the sadness. We’ve moved past all of this on the surface of course, but it still weighs so heavy on my heart and mind.

Rowan and Jack have recently developed a relationship that means so much to me thanks to the walker and Jack’s increased mobility and awareness! But, prior to this it was obvious that they didn’t know how to interact with one another once Jack’s seizures were under control and he was more aware. He is a hard kiddo to love on sometimes. Rowan wants to freely hug and kiss her little brother, but this is so overstimulating for him (even today) and he often screams, hits, and kicks her. He doesn’t like to be approached or touched without lots of warning, and even then he is likely to fight your advances. This used to hurt Rowan’s feelings so bad…”he’s pushing me away again,” she would cry. We have talked through things like this so much and I know that Rowan is wise well beyond her years. Her constant kindness and understanding always humbles me. To wrap up, I want to tell you about a little surprise that I am planning for Rowan’s 6th birthday next month AND I will be forever grateful if anyone can help me make this surprise EXTRA SPECIAL!!!

My heart is so heavy every single day with the weight of what I’m not doing for Rowan or how she always ends up having to wait because Jack needs something or has an appointment or is hospitalized. She’s NEVER once complained about her brother or uttered a selfish word. She tells me sometimes, “I remember what it was like before brother, but it would never be the same without him”. She’s been the strongest and most graceful of us all and her life has probably changed the most. If I could give this girl an experience she’ll never forget then maybe I could forgive myself for two years of missing things, failing her, and a lifetime of “hang on I need to give brother this first” or something similar. I got tickets to the Jingle Ball for her birthday, but now I need to figure out how she can meet her idol, Sabrina Carpenter!! ✨ HELP ROWAN MEET SABRINA!!! Does anyone know how I can get this amazing girl passes to meet Sabrina Carpenter​ at the POWER 96.1​ Jingle Ball in Atlanta next month?! Hit me with your contacts AND SHARE PLEASE because this amazing big sister deserves the most special gift for her 6th birthday! We have tickets for the Jingle Ball, but I can’t find any info about meeting artists! THANK YOU!!!!

Pictured below is my sweet girl celebrating her 4th birthday with just her YaYa (my mom). We had tried to prepare for a party, even ordered this princess cake! But Jack was in status AGAIN and we things were pretty bad at the hospital. It was TERRIBLE for everyone. Below this photo is one of Jack jack in the hospital with Rowan’s Minnie mouse of she insisted keep him company in the hospital. ❤rowan bday cakejack and minnie

This is the very first photo of both of babies! We had no idea about the secret battle Jack was fighting at this time! img_2807

Where does that leave Jack?

IMG_2556

Hi friends! It has been a while so allow me to reintroduce for new followers! I’m Leah, Jack’s mom. We lovingly call him Jack-jack like from The Incredibles. Jack has a very rare genetic and metabolic disorder called Pyridoxine Dependent Epilepsy. This condition has left Jack with a brain injury, as well as many struggles and delays. To put it simply, Jack’s body lacks an essential enzyme known as Antiquitin, which breaks down the protein building block called lysine in the brain. The breakdown of lysine in the brain is necessary for the brain to function properly. This essential amino acid breakdown doesn’t happen in PDE patients and the build-up of lysine is toxic to the neurotransmitters in the brain, resulting in seizures and abnormal brain function. What does this mean for Jack?

For the first 5.5 months of Jack’s life, he suffered from intractable epilepsy (uncontrolled seizures). He was life-flighted from our hometown to the best Children’s hospital in our state at 5 days old in status epilepticus; he was in a constant seizure state that could not be controlled. For the next several months, Jack was a medical mystery. He spent so much time in the hospital having seizures, being sedated, getting tests done. When Jack was 11-weeks-old, he had his second stay in the PICU at CHOA. His seizures were getting worse and worse. He was on 3 different types of anti-epilepsy medication and still he was having terrible seizures. The doctors did a bunch of tests and an MRI and told us that Jack had Mitochondrial Disease and that he was going to die. We were devastated but kept fighting for Jack. That turned out to be a misdiagnosis, but does illustrate how sick Jack was at the time. After much genetic testing, Jack was properly diagnosed with PDE and we have been fighting for his development ever since! At 6 months old, Jack had the skills of 1 or 2-month-old baby. He still suffers many delays from everything he has been through and his health is a daily battle. He is on a diet and therapy specific to his condition. He sees Neurology, Genetics, GI (because he has a feeding tube known as a G-tube), Neuro-developmental doctors, Developmental Pediatricians, as well as a Physical Therapist, Occupational Therapist, and Speech Language Pathologist. In addition to PDE, Jack has been diagnosed with Global Developmental Delays, Sensory Processing Disorder, ASD, Apraxia, and Cerebral Palsy. Jack is the happiest, sweetest, most wonderful little boy despite everything he has been through! He loves life and exploring his surroundings more than anything. He has been completely stuck and unable to do this until his doctors prescribed him a walker! We have been waiting on Jack to get his own walker for over a month now and still no word…Currently, Jack is borrowing a walker from his Physical Therapist while we wait for the insurance company to approve one of his own. I live in fear another kiddo will need it and we will have to give it back.

And this is where we circle back to the title. Where does this leave Jack? Out.  Because Jack was not a little sicker or because it wasn’t caught in time, it is a constant battle to get him the services and equipment he needs.  Jack was likely having seizures in utero that were not caught. I used to say I could feel him hiccuping all the time…makes me sick to think those were seizures. Anyway, the seizure activity was not caught (by me) until he was 4-days-old. I hate thinking we could have been better prepared…where was our help and our support? We have always been handed these huge and life-altering diagnoses with little no support. The doctors can only do so much and this shit is EXPENSIVE! This is not supposed to be a bitch session so I apologize if that’s what it’s turned into. However, the struggles and battles we face as special needs parents are so soul-crushing that I feel like writing about them may help me shed some of my anger and frustration.

Our biggest struggle is getting Jack what he needs. Jack’s doctors say he needs a certain amount of therapies to be able catch up and have a decent quality of life. This is 6 therapies per week and we currently do 5 a week to try and save a little money. We have private insurance through my husband’s work. He has a great job and we are very lucky. However, I was unable to go back to work after Jack was born and his daily needs keep me from being able to work a full-time job now. This means we are stuck. We live in a basement apartment at my parent’s house because our finances are so strained. Can you imagine?? We have two windows for the whole place. Again, not complaining because we are very lucky.  Private insurance doesn’t cover much of Jack’s therapies and they only pay for so many visits. In addition, we also do not qualify for any assistance so we are stuck. See a theme?  Jack is two-years-old and does not walk or talk. He does not have the fine motor skills to ever be able to button or zip, hold a pencil, etc. THIS IS WHY KIDS NEED THERAPIES! Shit, sorry did I shout that?! Thanks to therapies, Jack has learned how to do everything he knows how to now. Jack LOVES his walker and the independence/confidence it gives him. He is a totally different kiddo since he got the walker and his development is taking off! At two-years-old, Jack was able to stand up and hug his sister for the first time. I am livid thinking about the waiting Jack would be doing if his PT had not given him this walker to borrow. I can only imagine the price tag that will be attached once the walker is approved. Instead of battling insurance today, I decided to write. I hope there is a way to shed to this hard shell that these battles have given me, but so far I just feel like fire-breathing dragon that scorches anyone who gets too close.

P.S. As always, I welcome questions and I am always open to helping in any way I can. If you want more info on PDE, check out http://www.pdeonline.orgIMG_2909IMG_2558