EEG

This is hard to write.

 

Sometimes I am eager to update the blog, I am eager to share with you all what is happening with sweet Annabelle. She is in so many prayers and you all deserve the latest on what is happening. I love being able to share the good, and even when we have the not so great news, it’s still another piece of the puzzle and for that we are grateful and keep the prayers coming.

Today I have found myself lost for words. I am sitting here staring at a wall with eyes full of tears. Reality is here. The cold, harsh, raw reality has finally broken that rock solid wall of numbness that I have been hiding behind for so long. I keep saying that I cannot let the tears drop, because I will lose focus and motivation – at this point, I don’t get a choice. My heart has never hurt so bad, every single fiber in my body is aching, my head is literally spinning out of control. I cannot breathe. I cannot think. I cannot process. I cannot stand. I cannot imagine ever smiling again.

Yesterday morning went better than expected in the sense of making it out the house and to the hospital without battling “Cup! Cup! Cup!” from my hungry little girl. The distractions worked very well all morning and to be honest, I can’t imagine it ever going more smooth in that respect. I stared at Annabelle’s closet a bit longer than I should, wondering what to dress her in for the day. Today was a big day for her! I picked up a dress that I bought for her and Mady to match, it was adorable and then I started collecting all the accessories for both the girls. They both matched and loved it. I then dressed myself… I needed to match them too ;) I have to say – we were quite a cute collection of girls yesterday!

We arrived at the hospital with plenty time to spare. I love not feeling rushed. Valet parked our car and Annabelle strutted her stuff thru the waiting rooms as we navigated the chaos of where people thought we should be. (Admitting / Inpatient, but being performed as an Outpatient Procedure.. that really throws them for a loop). Annabelle was doing well, she was cautious about where we were, but she was doing ok. Soon after we arrived and completed our check-in, we were taken to the Pediatric Intensive Care Unit. Room #1. Annabelle glued her head to my shoulder, curled under my neck the ENTIRE walk to the PICU. She never lifted her head, she didn’t cling tight to me like she usually does, she just rested her head down and frowned. I kept whispering to her, “It’s going to be ok baby. Today is going to be a good day. Today will be ok, I promise.” I was so wrong.

I stood between the glass sliding doors looking into the room and the bed that was in front of me waiting for Annabelle. I looked at that room and just thought about what would be happening in here – by the time I leave today, this room will have served my family another roller coaster that I never would have imagined we would be riding. For the first time, my own anxiety grew. I didn’t like the day already, for some reason I was nervous! Im not sure if it’s because this is the 4^th time in three months that my little girl will be sedated or if I knew that this test was my last opportunity to find a scapegoat to what is happening without us moving forward with Mitochondrial Disease. A lot was resting on today, and that hospital room in the PICU was not warm and welcoming.. I look back, and it was my own instincts telling me to run. I knew from the moment I caught my breath before walking over that threshold, that the day would not run as smooth as we hoped. I whispered into Annabelle’s ear and hugged her so very tight, “It’s going to be ok today baby – I’m not leaving at all today. I promise.” I think that squeeze was for my own reassurance.

We settled into the room. I put my diaper bag, massive-overflowing-binder of medical records to the side and then walked to the chair beside the bed to sit with Annabelle in my lap. She straddled me like a monkey and laid her sweet face against my chest and didn’t move. I knew she was silently begging me to let us leave – please don’t be here.. please let’s go home, don’t do this! I ran my fingers thru her curls and began talking with the two nurses. We began the simple information, ‘Name – Medical History – Allergies – Birth History, etc’.. Annabelle didn’t move. I tried to pick her up to look at her and she clung to me tighter. Another nurse came in and wheeled equipment that was draped in sterilized plastic sheeting. Annabelle squeezed tighter. I could feel my face turning red and the sharing of our anxiety run thru our bodies together.. finally I asked “How long do we have until we begin? Roughly how long until she’s asleep?” The nurse looked at the clock and said, “Hmm… probably an hour, give or take.” I immediately asked her with sincere eyes, “I need Child Life in here, please, please, Annabelle cannot sit thru this for over an hour – I don’t want to put her thru today with her as upset as I know she already is, can we please bring someone in?” Child Life is a team of amazing people that work specifically with children to help them thru the anxiety of a hospital, procedures, etc. They support the parents if needed and also siblings that would visit a sick brother/sister in the hospital. They come along with lots of fun games, puzzles, iPads, bubbles, movies etc. They are fun – they do not wear hospital coats – they are genuine loving people with a comforting smiling face during a very scary time. I looked around at our room and saw sterile medical equipment – we needed some primary colors and fun in that room. Annabelle deserved that.

Child Life came in about the time I met the team of anesthesiologists, it was perfect timing. The wonderful Child Life Specialist pulled out the million dollar distraction = BUBBLES! I sat back and talked with anesthesia for far longer than either of us expected. He was actually quite helpful in exploring what was happening and offering input on tests and different perspectives to explore. It was a welcomed conversation. Him and I talked for a bit about which drugs we would be using and the process we will go thru to get her sedated. He checked over all the work the nurses were doing to get ready and said he would be back in a bit when we are getting started.

Between paperwork and lots and lots of doctors to meet and discuss things with, some volunteers came thru with a pup! How fun! Child Life called to have ‘Zoey’ come visit Annabelle. It was so sweet, the dogs were more gentle than you could believe. What a rough job they have, to walk thru a hospital and get loved all day :) Annabelle absolutely loved the pups, she cried when the first one left, so they brought another up to visit again! What a wonderful, wonderful distraction!

Once all the preliminary things were finished, more nurses started reporting to Annabelle’s room. I knew things were on there way to getting started. Child Life picked Annabelle up and asked me to sit on the bed to hold her. We needed to start her IV. . . IV? Why? Now? Can’t you do that once she’s already asleep? Aren’t you going to put her IV in once she’s asleep and then do everything? It was then that I learned exactly how this process would work. The IV needed to be in because the drug we were using to sedate her, would be administered thru her IV. (Propofol, the same drug Michael Jackson OD’d on). Darnit. Poor Baby Belle, I told her I was sorry – I really didn’t think she would have to be awake for anything painful today, darnit I lied to her.

I sat Annabelle in my lap with her facing me and gave her a bear hug. With both her arms underneath mine as I squeezed them down. One hand on her lower back/hips and another hand on the back of her head to keep her from moving, I held her snug. The moment she looked over my shoulder behind me where the nurse was standing, she started bawling. I closed my eyes and remained silent. She fought for several seconds as the nurse was simply putting the band around her arm and wiping her hand down with alcohol. She screamed her head off in a new scream, a scream that said “NOT AGAIN! Darnit! PLEASEEE Not again!” Before the nurse stuck her, she surrendered. She laid her head softly on my chest and looked down to my lap and sobbed. She didn’t move, she didn’t fight at all, she wasn’t screaming – just sobbing. This punched me in the gut harder than I could ever know. This cannot be my life, it just can’t. My poor, sweet sweet Annabelle. She is such an amazingly incredible strong little girl. I pray this is all over for her soon.

Once the IV was in place, the nurses started to call the rest of the team. I wanted to snuggle Annabelle but she didn’t want anything to do with me. She was upset, reasonably so, and she knew the day wasn’t close to being over. She wanted out of the room. She wasn’t buying the distraction of cartoons, bubbles, or an iPad any longer. She didn’t want to be held. She didn’t want to be near the bed. She didn’t want to sing and I couldn’t even offer her a comforting sippy cup. She wanted to leave - because she’s smart. Every time I would pick her up, she wouldn’t even look at me, she would just push away and climb out of my arms. It was such a helpless feeling as I stood there in that hospital room alone with an incredibly TERRIFIED little girl and I had to keep pushing her down the path she is begging her mommy to not walk down. I’m all alone with her, I am the only person in the room she knows to trust and I am the only person that keeps putting her thru this. Oh my God the guilt and helplessness that flooded my emotion! If this were Madelynne, I may be able to explain to her what is happening and why. Annabelle understands more than I can give her credit for but not enough for me to comfort her before the inevitable. We’re in such a terrible place right now.

Finally the doctor to perform the EEG arrived with his cart of materials and machines. He began to setup. He started taping a makeshift neckroll/pillow, he assembled most things he needed on the other side of our room and then moved machines around to make room for the rest of the team. The anesthesiologist joined our room with his team and then the nurses began to flood the little space that was left with random medications, syringes, and supply they were bringing along with them. It was like a very coordinated, three ring circus happening all around us. The only reason there was room for me to stand in the room is because I wasn’t standing. I was sitting in the bed, lounging and holding Annabelle as they all got into position and discussed doctor talk among themselves. I was just as nervous as Annabelle was I think (ok, that can’t be true.. but I was nervous. I didn’t know what was happening next either. We were both just waiting). Finally they started recording and calling out the time on the clock, I knew it was beginning. The anesthesiologist asked for a reading on the Propofol. Two nurses and another anesthesiologist read the syringe, re-read Annabelle stats, what the dosage is they all agreed on, double checked again and then handed the syringe to the main anesthesiologist – he repeated the exact same. You would think they were handing over a top secret, crazy, billion dollar item – I guess with the life of my little girl in all their hands, Triple and Quadruple checks were necessary before administering the drug.

I was holding Annabelle against me. The anesthesiologist looked at me as he leaned over the bed with us, he told me to hold her snug, talk to her, this medication hurts going in and she won’t like it, but she will be asleep very quickly. This is all she will need – just this dose and then as soon as she’s out, I will get up and we will lay her down to begin the procedure. I nodded my head and said, “I understand”. He placed is hand over her hand and looked at Annabelle. He then bowed his head and the entire room was silent, he said a prayer to himself without mumbling a word and with his face not a foot and a half away from mine I watched his lips read “Amen.” And then he administered the drug. It was quite surreal what was happening all around me. I felt like I was in the spotlight of this bed being surrounded by THIRTEEN doctors, all silently watching what was happening. It was very unnerving. I knew Annabelle could sense that spotlight too, but for her she didn’t know what it was all in anticipation for – she was just upset. I did my best to keep curling her over to her side to face only me. I didn’t care how Janis Joplin my voice sounded, I wrapped her in my arms and turned her body away from everyone so she could only see my face and I started to sing. You know the song by now, “Baby Annabelle, of mine. Everything about you is perfectly fine. I love what you are and I love what you do. Sweet Baby Belle, I love you.” You could hear a pin drop between the beeps of her heart rate on the monitors.

The drug was fully finished and they were flushing her IV when she began screaming. The pain pulled her attention away from me and she panicked again. She started arching her back, backwards and throwing her arms around. She was pulling at her IV and spilling crocodile tears from her heavy little eyes. It took far longer for the medication to kick in than I expected, it was several (30?) seconds before she started looking drowsy. Once she looked drowsy, I think the pain was gone. She calmed down for a second and instantly her head dropped backwards before I could catch it. Oops, sorry baby! I was relieved. It was over. She is out and we can get this show on the road. Just then she woke back up, roaring with energy and ticked. The anesthesiologist quickly went into action and asked for another. He emptied the next syringe into her IV and she screamed the same pain and exact same emotion, trying to rip off the IV. Kicking and making a mess of all the cords, wires and tubes her and I were tangled in. This time she didn’t drop her head at all. She kept fighting.. her cry was getting more. . . what’s the word – very medicated/she sounded drunk. Very disoriented but she was still moving about a LOT. He did another push of the Propofol and Annabelle finally calmed down. I looked up at everyone, the room was finally quiet again, I saw people exhaling, I watched eyes spin from one monitor to another watching her stats, I then looked at the main anesthesiologist that was standing right beside me and he read my eyes, “It’s ok mom. Im sorry about that, she’s a very very strong determined girl you have. She really shouldn’t have needed more than one dosage. She really doesn’t want to relax, does she?” I smiled and said, “No. Not at all. Naptime isn’t exactly her favorite.” We all smiled and I began to search both sides of me, trying to find my best exit strategy to move myself out of the bed but hand off a limp Annabelle and all her wires. I looked like an acrobat but we did it.

As soon as she laid down alone, Annabelle woke up again. My heart stopped. I was trying to get myself out of the line of fire and to the furthest corner of the room to let the doctors do their job. They quickly started reading off her vitals. Her blood pressure was dropping and they kept repeating it’s updates, another nurse was repeating the oxygen levels consistently. The anesthesiologist rarely took his eyes from her himself. When she wouldn’t stop crying and appearing to be still I heard him say, “I do NOT like this.” He mumbled it and sounded ticked. I think he was frustrated that he was having to use so much medication to get her under. I knew everyone in the rooms anxiety was high. He didn’t want to give it again because of her vitals dropping. I stood back and bowed my head. “Dear Lord, I know you can hear me. Please be with my little girl. God send her an angel to sit next to her body right now. Wrap her in your love and strength so she knows she is going to be ok. Lord help my baby get thru this. Help ease her pain and fears to allow these doctors to use the knowledge you’ve given them to help heal sweet Annabelle. We need you here with us today Lord, Annabelle needs your strength, send her an angel to rest next to her. Amen”

Annabelle was calming down. She was much more quiet. She wasn’t crying as loud and she was running out of energy. The angels were arriving to comfort her. I consciously reminded myself to Inhale – Exhale. My phone had 257486514 text messages. All I could think about was how much AK will never believe what his little girl was conquering and how much she was fighting these doctors. I picked up my phone and captured the 5^th and final time Propofol was administered. This was the final dosage given in bolus form. The rest was slowly given via IV to keep her sedated after she was finally unconscious. 

Once she was under. The specialist to conduct the EEG was given the green light to get started. He moved into action immediately and worked very, very quickly at assembling all the probes on her scalp. Nurses were repeating to one another the times and dosages that were just given, stats, vitals, etc. The anesthesiologist walked over to me and picked his Starbucks cup back up, “Mom. You have an INCREDIBLE little girl. I cannot say that with enough emphasis. She is a fighter – please don’t have any worries. As long as she has strength like that, she will get thru whatever is battling her! I’ll be right here if you need anything, she’s ok now.” I smiled and thanked him for his expertise and skill. I really did feel as though she was safe finally. I didn’t move next to her, I kept a distance as everyone worked quickly around her.

The EEG itself was scheduled to take a couple hours. Within minutes of beginning the test, Annabelle’s vitals began to fluctuate again. She was breathing extremely deep and snoring. She would gasp, sometimes cough and choke, when she would cough – her vitals were very erratic. The anesthesiologist asked repeatedly over and over to the tech conducting the EEG, “How much longer?... Hurry up. How much longer?” I know the gentlemen was truly working as fast as he possibly could – but a scan is a scan, watching brain waves isn’t an xray – it takes time to do a reading. After 20min the anesthesiologist told him “You’ve got 15min, we’re pulling her out”. The tech said he needed at least 25m. Anesthesiologist said, “15 minutes. Im cutting her off in 13m.” I don’t think he felt easy the entire time during this process. Without a doubt it wasn’t as seamless or as smooth as it was expected to be conducted, but he still didn’t like the way Annabelle was acting even while under. I never spoke a word. I was speechless and stood behind everyone doing their jobs, watching my little girl’s body lay helpless in the bed and glancing at a computer screen that showed me how alive her brain really is inside that cute noggin of hers. I was counting down the 13 minutes. 

  

 

Finally it was time that they all agreed we needed to stop. The EEG Tech approached the top of Annabelle’s bed near her head and looked down at her. With his hand wrapped securely around all the wires connected to her head, before he pulled them all away with one swift motion, he bowed his head, motioned the Sign of the Cross and whisked the wires away from her body. At the moment he did that, the nurses were cutting off the Propofol pump and everyone was standing around waiting to see how she would do. They pulled the line connecting to her IV, flushed the IV and within about a minute Annabelle was beginning to stir around. She immediately wanted to sit up and instantly tried to cry but couldn’t deliver a sound. She was so disoriented but there were too many cords and wires surrounding her still to keep me from climbing onto the bed with her. I wanted to lay down next to her and let her snuggle close as she was waking up – but I couldn’t get around all the doctors to do so, and the very last thing I wanted to do is be in there way. Coming out of the sedation was easier than going under. Once she stopped trying to get all the way up, and I was able to make my way to her bed and wrap her in a blanket, she relaxed a bit. I held and rocked her in my arms very slowly. The EEG Tech was packed and leaving the room, the anesthesiology team was conversing among themselves and nurses were cleaning up while I sat there with my little girl. My eyes closed, an honest half smile of relief on my face, and wrinkled forehead of grief. I asked a nurse if she could dim the lights and she smiled as she walked over to the light switch. I turned my baby to face me and she reached for my shirt.. she pulled it down just enough that the top of my chest/neck was skin and she laid her head down next to me. We sat there silently for no fewer than 5minutes before either of us moved. She was blinking her eyes occasionally when she opened them. She didn’t want to get up. She was defeated. She was tired. She was comfortable. I was heartbroken.

We waited for about two hours after the test was finished before we were seen by each and every doctor and allowed to leave. I couldn’t wait to get out of that hospital. I wanted nothing more than to take Annabelle home as fast as I possibly could. I wanted to put her in a deep warm bathtub and scrub the goop out of her hair. I wanted to lotion her down and snuggle her in the warmest jammies. I wanted her to be able to see her daddy and I wanted to see her face when she saw sissy. My happy place was just knowing that anything outside of these hospital walls that can make my baby girl smile, will bring me a breath of fresh air. I needed to see her smile like it was a drug my body was having withdrawals from.. it was intense.. I wanted to run out the door so fast to make my baby girl happy.

Annabelle had only one spell of energy where she walked around silently playing for a bit, and then she hit a wall. She started stumbling a little and becoming more and more clingy. I knew she was exhausted. Around 5:30pm I picked up Madelynne with Annabelle in the backseat. Annabelle kept repeating blood-curling screams of pain. She would thrash around in her carseat, absolutely hysterical and then slow down into a full crying of tears. Finally there was a break in the fits. While driving down the road, Annabelle had a seizure. . . . . . Madelynne watched it happen :’(

Annabelle didn’t regain consciousness from the seizure the entire car ride. Mady kept informing me every couple seconds, “Mommy! She’s asleep, mommy! Annabelle won’t wake up!” I reached back and could feel her breathing, but she wouldn’t sit up or open her eyes. Finally I was home and got out the car. In a Lifetime Movie, I would have rushed around the car with smoke behind my sneakers, ripping her out the carseat. But that isn’t my reaction any longer. I opened the door and wiped the sweet, greasy, curly hair from her forehead and softly said her name – forcing a smile so that my voice would sound calm and comforting. I unbuckled her out the carseat and she began to wake up. You could tell she was beyond exhausted. She was very happy to see her daddy though – and smiled when she recognized Mady was there.

I took Annabelle straight upstairs. I turned on the water in the bathtub and dimmed the lights in her nursery as I sat her on the changing table. She laid down and I smiled at my brave little girl. She smiled back. I undressed her and asked if she wanted a tubby and she just looked into my eyes as I scooped her naked hiney into my arms. AK came upstairs and looked around the corner in the bathroom, “That’s plenty water Ashley. Cut it off.” I looked at Annabelle and then back at him and said, “No. she’s getting the spa of baths tonight.. not an inch of water, it’s a hot tub of relaxation if you will. We’re girls, this is what we need after a long day – go away, you don’t understand.” I looked down and winked at Annabelle. She looked at AK and said, “HA!” That’s my little girl.