I texted Grammy. She wanted very badly to go with me to the hospital to be an extra set of hands so I wouldn't be alone doing all this. Her help was very welcomed.. and for nothing else, but to help wrangle Annabelle as I filled out paperwork and spoke with doctors. I asked her to be at the house ASAP and she also moved into motion. The morning was chaos, it went a lot like this:
- Mady grumbling because she didn't want to wake up. (Maybe if she didn't fight bedtime the night before.. this wouldn't be an issue!)
- Annabelle was hysterical, begging for a cup.
- Zoey wouldn't get out of my bed to go outside. I pushed her behind out the back door.
- I took the fastest shower of my life and slipped when I stepped out the tub. I don't even know how I did it or managed to fall.. but it happened, the worst part is that I hit my pinky tow on the medicine cabinet and jammed/bent/hurt it to where it's throbbing constantly!
- Finally found an outfit for Annabelle that doesn't have snaps and is safe for the MRI.
- Got Mady dressed but it became a battle because she believes every shade of pink goes together, so she ended up looking dressed appropriatly only for a Wal-Mart outing, nothing more.
- Packed diaper bag.. books.. sippy cup with nothing in it so it wouldn't tease Annabelle.. Medical records, MRI forms, Physical clearance sheet, etc.
- Let the dog inside and had to configure Plan B because it started raining and she can't stay out. I barricaded her in the hallway with baby gates and started loading kids in the car.
- Annabelle threw up on her clothes. It was mostly stomach bile/reflux. It hurt her so bad but there wasn't anything I could do. She can't have her meds or eat anything before the test. When her tummy is empty, it hurts her so terrible and she was begging to eat something to feel better. Poor baby. And poor mommy, because I had to go on my next mission to find a second outfit that didn't contain snaps or buttons!
- I ran downstairs and something caught my eye. My debit card was sticking out of the slot of the PS3. This wasn't a good sign. Someone got into my purse... someone that is probably around the age of 21months and loves to give mommy a heart attack and fry my nerves.
- I loaded Annabelle into the car beside Mady and jumped in the front seat. Push START and my car wouldn't start. "No Key Available" - or whatever it read to me. It means I don't have my keys in my car.. they must be inside from when I opened the door last night.
- I made 876546435 laps around my house and can't find my keys anywhere. My house isn't filthy my any means and it isn't junky at all - so how can I not find my keys in an open room?! I assumed the position of crawling around on the floor all over my house on my hands and knees, dragging my cheek across the floor looking under every bit of furniture. I checked every basket and toy bin I could find. I tried to put on my thinking cap of an almost 2yo and it led me no where. The time was 8:25 and I needed to be at St. Mary's in 25 minutes!!! UGH!
- Finally grammy pulled in the driveway. I didn't think twice and started unlatching carseats from my car and walking towards hers. "Good Morning lovely lady - you're driving today, we don't have time for questions, pick a kid, we gotta move!"
I dropped Mady off very quickly at the sitter's house and as I was pulling out of her subdivision I turned up the radio. "Interstate 95 Northbound is practically shut down at Bells Road. No one is moving and traffic is backed up for miles, choose another route, do not use I95". Oh fabulous. I needed to think, fast. Where do I go now? I decided to jump on 295N and get off in Varina to take rt.5 into the city and catch the interstate from there. Of course, as soon as I merged onto Rt.5, I get caught behind a slow truck... it could have been a tractor, knowing my hometown and fortunately it wasn't but this dump truck wasn't moving faster than 40mph and it was boiling my blood. Annabelle was still screaming in the backseat and we were doing everything we could to keep her happy. When I jumped onto Broad Street and began approaching 95/64, the traffic was still at a dead stop in the city. I decided to just take Broad Street all the way up until Boulevard/Monument, etc. It took me almost 45min to get to the hospital and I was late. I HATE BEING LATE!!!!
Annabelle and I checked in as Grammy parked the car. I filled out paperwork and very quickly, Patty met me in the waiting room and we were taken back to another room with cartoons and plenty chairs to relax, alone. Annabelle was not happy at all. She cried from the time we walked into the hospital until the time the doors shut of that room, she then started screaming.
My poor baby's anxiety over these hospitals or doctors offices are so heartbreaking. She clenches so tight and yells, "Mamamamama" with tears pouring off her chin every time. I feel helpless and so guilty for continuing to bring her to these places. She KNOWS she will get hurt, be stuck with needles of some sort, touched and poked by doctors while they are wearing a smile and saying to her, 'it's ok pretty girl! oh, look at your shirt! oh hey, where is your belly button?' She could care less about your small talk - the kid's smarter than that and she doesn't trust anyone. It's so so sad :( I hate that she is this smart, I hate that she knows exactly what tool in a doctors office does, I hate that she is terrified every time we walk over the threshold of the hospital. Kids shouldn't have to live like this, they shouldn't fear things like this. And I keep doing it all to her. She begs me to leave and protect her and I am the only standing by her head and holding her down.. I can't tell you how much it tears me apart. All I can do is fight back my own tears and tell her, "Im so sorry baby. I love you, I love you, I am so sorry!"
When the nurse came back into our holding room, she started asking questions and we discussed briefly why we were there.. Annabelle's allergies, no foods / Elemental Diet.. my concerns about anesthesia.. where will she be when she wakes up and can I give her a cup of formula, because she will be very hungry, etc. Annabelle finally calmed down (or surrendered) and watched TV for a moment. I was SO grateful to have this time with her and I begged for more and more smiles while she was distracted from crying. I was happy to be able to enjoy her and tell her how much I loved her because I knew the doctors would be in soon to take her from me. I wanted to kiss her all over and hold her calm body in my arms without her crying and flailing around. I didn't want to have to hand her over in that condition and I was SO relieved she was calm.
I got to hold her for a good 5 minutes of being happy before they took her.
.jpg)
Annabelle laid on me watching TV, she was happy and content but I started to feel her body twitch. I didn't know what was going on.. I then started feeling her shiver slightly and like always, wondered if she was cold. Her skin was cool but not too cold. The tremors only lasted several seconds and they stopped.. they happened to have occured when Grammy wanted to snap a picture of Annabelle. What timing, huh?
Finally the doctors and Anesthesologist came back to talk with me again. It was time that Annabelle heads to the back and I gave her my goodbye kisses. I'm sure this is supossed to be a sentimental thing but I always overlook the impact of how important that kiss can be. What if it's my last kiss to my baby girl? I always think about that AFTER she is gone from me. It was too quick - I didn't squeeze her and hug her. I didn't look into her eyes with a smile on my face and tell her, "I love you BabyBelle, smile pretty for your pictures". I always feel like I do it wrong. I give her a quick peck and say, 'be good, love you sweety' and they're gone with my baby girl.
The process was to take Annabelle back into the next room. She would immediately received gas thru a mask that would put her to sleep. They would begin the IV and once she was on the MRI table, they will let me know and I can head upstairs to the Surgical Waiting area. They took her around 10am and we waited. About 5 minutes later Patty came back to meet me and said she did great, she was on the table and the MRI was about to begin, she directed me where I needed to go and I took off upstairs. The procedure should last 65 minutes and I will be notified as soon as she is out.
Let The Waiting Begin...
I'm never a fan of this part.
At the counter, I handed the volunteer ladies my slip of Annabelle's information, answered a couple questions and received a pager and cheat sheet card that detailed how to read the process of Annabelle in MRI/Recovery etc. over their monitor displaying all the patient numbers.
I was standing beside the chapel and kept looking inside thru the closed glass doors. I didn't want to go in there. If I walk into that room, I will break down and cry. If I start talking to God on the other side of those doors, in that silence, I will lose myself. I don't have time to do that. I can't lose focus on what I am fighting for. I can feel God everywhere inside me and guiding me thru this nightmare. I am following his leads and I am trucking forward thru the darkness. I pray he is beside us on the path he is leading.. although it isn't the bright, sunny, flowers growing all around... he's led me down the fork in the road that is deserted, cold, dark, scary, alone and without any road signs along the way. I am trusting in what he is doing and trying my hardest every single day not to question him.
Inside that Chapel, I would have a lot of things I wanted to say.. a lot of heavy prayers, questions that I want to demand an answer to, begging and pleading for understanding in all this and questioning why Annabelle is having to live this journey. I knew I wouldn't do my God or faith any justice if I walked into that room. I would sit down and expect answers or I would stand up and walk out mad.. so I decided to say a small prayer on the other side of those doors and called a friend.
Her and I talked for a while. I vented briefly and we discussed my fears about Mitochondrial Disease. I told her with a smile across my face, "Annabelle is a fiesty, pain in the butt, every day toddler. She smeared sunscreen all over my carpet last night when she was supossed to be in bed! As much as I wanted to yell at her, I have to laugh because. . . that is what toddler's do. They pluck your nerves until you want to snap. They drive you nuts and make you worry far too much. Annabelle is an everyday toddler and acts and behaves just like we would expect her to.. when she's feeling well. When she isn't doing well, when she's having seizures or screaming out in random pain, when her fever cannot raise above 94 degrees, it makes my heart sink and gives me the motivation and fight even harder to bring back 'normalcy' for my little girl. She deserves every day to be full of laughter, tantrums, pudding smeared across her face, dancing to Mickey Mouse Clubhouse - Hot Dog Dance, all of it. Seeing my little girl normal and then quickly fade into a version of my 21 month old I hardly recognize is motivation to help her.. I need to keep that focus because if I start feeling sad for her (which I do), then I may lose focus and drive to keep fighting. Annabelle makes it easy for me, she makes it easy to see what I am fighting for. She's an incredible kid and deserves a happy normal life. I will fight for that. . . . . but it's getting harder and harder everyday."
She asked if we could pray together, I quickly thanked her for the offer and agreed. She prayed and I listened, with my eyes closed standing in the middle of St. Mary's Hospital with doctors, patients, kids, visitors, florists, employees, everyone walking past me moving quickly about their life - I stood there with a phone on my ear and tears pouring off my chin. I stopped wiping when I couldn't keep up with them all. I kept my eyes closed and felt each and every word she spoke as she picked me up in her prayer. I literally felt my heart burst of love in my friend, and shatter at the same exact time for my daughter. This is all too surreal. My baby girl is downstairs, under anesthesia with a banging MRI machine reading her brain. She's alone with a tube in her mouth and IV in her foot and I'm not with her. The power of prayer is an incredible thing and is exactly what I needed at that moment to be 'with' my daughter and my God. I was hardly able to mumble the words, Amen.
After I hung up the phone, I stared out the window and refocused. I needed to figure out how to make the tears stop. This was the moment I have been fighting for over a month.. the tears. They haven't fallen at all yet - not one. I am so scared that when that moment happens, they won't stop. I need to remain focused, and the prayer was exactly what I needed to be recharded.
I also needed caffeine. Starbucks, stat. Grammy and I headed for the coffee shop and we both ordered a Hazelenut Macchiatto and slice of raspberry pound cake with buttercream frosting. Mmmm! We took a seat alone in the main hallway at a small comfy table and two chairs and talked for a while. I talked far longer than she probably wanted to hear, but I was attempting to waste as much time as possible. I brought grammy up to speed on Mitochondrial Disease on a level that I hoped wouldn't frighten her. Finally I checked the time and it had been an hour and 15 minutes! Annabelle should be finished soon! We threw our trash away and headed back to Surgical Waiting and I checked the screen.
Annabelle was number 361067. Her color changed soon after we approached the waiting room. Blue means she is out, the procedure is over and she is heading to recovery. I just knew my beeper would be going off any moment. I waited.. and waited.. and waited.. .. .. .. It was driving me nuts. I started reading things on the wall about the history of St. Mary's. I stood beside Grammy rocking my hips back and forth holding my binder of medical records and notes. She looked at me and said, "You're swaying back and forth like you have a baby on your hip.. you don't Ashley, it's ok." I can't help it. I do this all the time because I am so used to moving. I couldn't hold my nerves. My baby girl was coming out of anesthesia and I knew she would be scared, she always is. I wanted to be with her and I am stuck upstairs and no where to go but to wait. I HATE WAITING!!! Finally I decided to go find some warm water. I filled Annabelle's cup and made her a warm sippy cup of formula so it would be ready for her as soon as I see her. I reconfigured things in my hands so they could easily be put down when I walked into her room. It's amazing the things I can find to do when I am begging for distractions.
FINALLY! Around 12pm my beeper went off. I rushed to the desk and handed it over. They weren't nearly in as much of a rush as I was, of course, and I internally begged for them to pick-up the pace and get moving! One girl said to me, "I'll take you to your daughter, follow me." I followed her and we headed towards the elevators. We made it to the basement it seemed.. down zig-zag of hallways and into a quiet white room where I turned the corner and saw my precious sweet little girl. She was sitting in a nurses lap, she was smiling, she was happy . . SHE WAS EATING!! WTF?!
My walking pace moved double time as I approached her. My smiles of happiness to see her well quickly turned to fear that my child was eating. "WHAT IS SHE EATING? WHY DID YOU GIVE THAT TO HER?" The nurse said with a giggling voice, "Oh it's ok mom. It's watermelon, we checked.. it's not strawberry. Now Mrs. so&so over here gave her Graham Crackers before we realized she was allergic so then we gave her the popsicle. She was hungry mom! She wanted to eat!" Of course she wanted to eat, she's wanted to do so for the last 97 Days that she hasn't eaten! She can't eat and it's written all over her chart! It's on her Allergy band around her foot. DO NOT FEED! Are you kidding me?! I reached for my daugther and picked her up. She was so happy when I walked into the room and that quickly turned into upset tears when I took a popsicle away from her. I looked at the sippy cup and it was full of a red juice. I was beyond pissed. BEYOND FURIOUS! The nurses were gone the moment I took Annabelle and I was left in the room with a doctor that I doubt spoke english. I threw everything around her away to remove it from her sight and tried to offer her the sippy cup I made her of safe Elecare. She wasn't entertained at all. I asked the doctor in the room, "Can we leave please?" He agreed, we signed paperwork and he escorted us to the end of our zig-zag hallways towards the main entrance where we arrived. Can I say again, I was freaking livid?! Thank you so much St. Mary's Hospital, for the second time in a row - you've attempted to kill my kid. If she dare has a reaction to the foods you gave her, or this flares her EoE, I will be marching back to your hospital with steam pouring out of my ears!
As soon as I shut the door from buckling Annabelle into her carseat, my phone rang, "Dr. Young" I answered quickly to give her an update on how the morning went, and was shocked when she said, "Well, the MRI is not indicating any tumors." Huh, what? How do you know already? Im still at the hospital! She said from a preliminary look, it's not showing anything that is jumping out but there is already one defect noted on the report. We don't know what that is and will find out after the Neorologist reads the rest of the slides, but for right now, it looks normal.
The entire drive home, I kept turning my head from the road to check on Annabelle. I couldn't stop watching her. I was watching to see how she was doing from anesthesia, I was watching for an allergic reaction, I was watching for a seizure, I was watching to see if she went unconscious since her temperature was still in the 94s. I couldnt stop taking my eyes off her. She looked pitiful by the time we got home. She hardly picked up her head and was drooling in the carseat. The anesthesia really kicked her butt this time I think. Poor, poor baby.
After I dropped Annabelle and grammy off at the house, I rushed to pick-up Mady and grab grammy some lunch. I knew I needed to eat but I just couldn't stomach the thought.. I had zero appetite for anything so I settled on a coke. Two sips of that and I realized it was diet, gross, into the trash it went. I put Mady and Grammy on the search mission to find my keys in the house and I rushed to work. I had a meeting that I needed to host, I have work that needs to get done ASAP and the pressure is wearing me down. I found the closest conference room as I could, shut the door and hid for the entire afternoon to work alone. I didn't want to talk to anyone, I did emerge twice to pour myself a cup of coffee and then confined myself again into my conference room. I don't like giving the impression that I am anti-social or being rude, I just didn't have anything to say to anyone yesterday. I am emotionally exhausted and worn down to the bare minimum of my patience. All I could think about was my meeting and getting my work done as fast, efficiently and well as I possibly could. Distractions weren't welcomed. The only distraction that I was willing to accept was my phone ringing with good news from a doctor. That's it.
At 4:30pm I packed my things and flew out the door. In the pouring rain of course. Got home and moved all the carseats and my days luggage from grammy's car to mine. I ran inside and changed Mady from her clothes and into her bathing suit. Packed her swim bag and restocked the diaper bag. Of course Annabelle had JUST fallen asleep only 15min prior to me rushing home, but I had to get her up, changed, dressed and back out the door. Mady had Swim Lessons in Midlothian again at 5:30pm and I knew the rain would make traffic difficult. I loaded the car and girls and we headed towards Midlo.
The day was long. Stressful and emotionally up and down the entire day. I am grateful it's behind us but I am also discouraged in a sad way that they didn't find a tumor on her brain.
Let me take a step back, just so you can see my perspective. Mitochondrial Disease is terrifying, it's devestating to think my daughter may be suffering another silent, incurable, chronic disease that has every possibility of destroying her tiny innocent body. I am terrifyed beyond belief about the potential of Mito. And with every negative test we get that doesn't indicate this is something else, it points even more strongly towards Mitochondiral Disease. It's incredible to think that if I had to choose between the lesser of two evils, that I would be praying my child has a brain tumor. Doctors are smart, they know what to do with tumors and I can have hope for a tumor to be completely benign. We remove it, and this nightmare of a journey is behind us. That chance may not be there though, it's likely Annabelle doesn't have a tumor interfering with the Hypothalamus and Putitary Glands of her brain, which is a blessing and I am grateful, please don't get me wrong. But it leaves me with more questions and a greater chance of Mito. That potential is even more devestating :'(
I pray to God at this point, not for help, full healing or direction. I am praying for understanding. It's the understanding that I am struggling the most with and I pray he can help guide me.. I am so very thankful for the incredible friends and family we have praying for my sweet little girl, I am grateful for the friends that call me to pray, the friends that answer their phones at all hours of the day and night, I am grateful for the friends that come over to visit in a pinch, or pick-up and keep smiles on Mady's face when mommy and daddy cannot and I am thankful for the family that wouldn't dare let me ride the journey of a Brain MRI alone. Thank you God for all these wonderful people you have brought to my life. Without them, I could never do this alone. Thank you all for your unconditional love and support, prayers, offers of help and heartfelt cards. Thank you, thank you.
Love to you all,
Ashley
No comments:
Post a Comment