Here's the whole story. A few months ago, Hadley came home with a paper from school announcing the school musical, "Cinderella". She wanted to try out. I might have cried later on, thinking of my child trying out for the musical. She is deaf. She inherited those genes from both of her parents. She is tone deaf. She got that one from her dad. It is completely unrelated to her deafness. Also, like her dad, she loves to sing. She makes up her own words and her own tune and really enjoys herself. I love it when she sings but I was really nervous about those tryouts. On the big day, I went with her. I explained quietly to the woman running the tryouts that Hadley is deaf. She does so well that people don't always realize. Maybe I shouldn't do that. Maybe I should just let her be Hadley and let people come to their own conclusions about her. I'm not there yet, though.
She was cast (with all other applicants) as a member of the 1st and 2nd grade chorus, singing a few numbers at the beginning of the show. There were many practices, dress rehearsals, etc. and the big show finally arrived. Hadley wanted her hair in curls and I gladly obliged. She looked darling and had a great time. On Friday night, while curling her hair for the 3rd night of performances, I noticed a goopy matted spot on the back of her head. When I tried to look closer, she yelled at me to leave it alone. She never complains of pain. She is one of the toughest people I know. I was really worried all weekend long and called the doctor's personal scheduler (oh, yeah, I have that number!) on Sunday night so that she would hear my message early Monday morning. I had my suspicions about what was going on back there. Worst case scenario, her cochlear implant was infected. Best case scenario....I couldn't think of one.
On Monday, we went to the University of Utah Hospital to meet with one of Dr. Shelton's residents. By the way, if you want to know of a job that seems to be only slightly more glamorous than being a garbage collector or a professional toilet cleaner, check out a day in the life of a resident. It's almost funny. They DO pay for becoming official doctors, don't they? Anynow, the resident was concerned, left the room and called "THE DOCTOR", the head honcho, the surgeon, the main man. He called back and immediately said that he needed to see Hadley on the following day. Tuesday came and we made another trek to the University of Utah Hospital. I had to buy a Webkinz to convince Hadley to let them clean the wound and cut away the dead skin and there, poking out of her head, was the edge of her cochlear implant. "Let's take a closer look at her under the microscope," head honcho says. Residents crowd around for a look at something the surgeon has never seen before. If he's never seen it, it must be rare and exciting. Rare and exciting is code for "You do not want this to happen to your child" as far as I can tell. Rare and exciting is what got Hadley published in the Journal of Neurotology and Otology last month for the trauma she went through in 2007. Since I don't currently subscribe to aforementioned journal, THE DOCTOR gave me a copy of the article. Hadley is "Case 3" for those of you who are rushing out to buy your copy of the journal.
As I detailed Hadley's cochlear implant ups and downs, Stewart noticed THE DOCTOR patiently listening. He was sure that THE DOCTOR knew all about Hadley's case since she was one of his most rare and exciting patients. Yay! Go Hadley! But he listened anyway and then gave me worst case scenario news. Surgery. Friday. Big Head Shave. Already on his schedule. Surgical scheduler will give you pre-op instructions. I'm sure you remember them from last time. See you on Friday.
Hadley didn't tell anyone about her upcoming surgery. I asked her to tell her teacher at school. She said it would be too hard to explain. She pretended like it wasn't happening. On Thursday night, she got to choose dinner. She picked Cafe Rio. Over quesadillas and rice and beans, sweet Maddox told her he was scared about her surgery. Here's how the conversation went:
M: "Hadley, I'm a little nervous for tomorrow."
H: "It's okay, Maddox. This is my sixth surgery. You don't need to be scared."
Wow.
Thursday after Cafe Rio, we decided to have a late night, complete with popcorn, chocolate chip cookies and Star Wars movies. I fell asleep on the couch; Hadley made it through the movie. I thought that would help her to stay up late. Maybe she could sleep in on Friday. We didn't have to check in for her surgery until 11:00; she couldn't eat after midnight. Of course, she must have had some surgery related nerves because she woke up at 6:58 am. I convinced her to go back to sleep and then Lincoln woke up. I tried to keep him quiet. He dialed 9-1-1-1-1-1-1-1-1...which apparently still works. They called back. "We're fine. Sorry." (We'll be at the hospital soon enough, I almost told them.) The house sprang to life after the phone call and the big surgery day began. Round Six for Hadley.
There's something about watching your incredibly brave and mature seven year old go into surgery. She was happy and sweet, kind to the nurses, friendly to the other patients and parents. When the anesthesiologist came to talk to her, she requested a new flavor of anesthesia that she'd never tried before: Blueberry! He said nobody had ever asked for blueberry before but he was sure he could find some. She held his hand and bounced down the hall with him, explaining to him that she was missing Friday Fun at school. He told the nurses later that she had the prettiest eyes he'd ever seen. He was smitten. So am I. I cried as she walked away, remembering surgeries 1 through 5 and hoping that number six would be okay.
Waiting, waiting, waiting. I left my winter coat on the entire day in the hospital. I couldn't get warm.
Finally, THE DOCTOR came to talk to us. "She did really well," he told us. "Things were more infected than we thought they would be. We irrigated and put antibiotics in there." I asked a few questions. No, they don't know why this happened. No, they've never seen it before. No, there's nothing we can do to prevent it happening to the other side.
Hadley is slow to wake up from anesthesia. She wakes up angry at me. For some reason, this makes me feel guilty. She also wakes up sick. We stay in recovery for the rest of the day. Most of the patients have left. Hadley can't drink anything. Many doses of anti-nausea, no pain meds. She's still as tough as nails.
Finally, they tell us we should stay overnight because she can't keep anything down. "I want to go home," Hadley says. They call the doctor who recommends a lot of IV fluid and some medication to make her retain it. After 600ml, we get to leave the hospital with instructions to return in the morning if she isn't doing better.
Home. What a long day. Family, toys, a hot meal are waiting for us. Thank you. I don't know how we would get through life with Hadley without a lot of help. Thank you, thank you to all of the helpers. And now, it's over. I hope we can go a few more years without a surgery. Somehow, Hadley still hasn't noticed that over 1/4 of her head has been shaved. That will be another bad day. But here's to a few good days in between.
18 comments:
wow. she is in our prayers. I think she gets some of that "tough as nails" strength from her mama though. I don't know how you even survived #1, not to mention the other 5. I know I'm not that brave.
p.s. I'm sending you some of our 65 degree sunshine we had this weekend...the wait was worth it!
Oh Misha, I'm so sorry. What a tough little girl you have. You both are so strong. I really hope she has a good recovery. Maybe some cute spring hats will help? My thoughts and prayers are with you.
I love your new family photo.
Maybe a great headband would work after the bandage comes off.
Best wishes, prayers and hugs to you in these hectic times.
Hi Misha,
My emotions got the best of me as I read your weeks events. Hadley is such a beautiful, strong little girl. She has such amazing insight for one so young and I pray that all will go well for her for a really, really long time.
Jared has surgery this week. For some reason I feel even more nervous about this one then I did during his transplant. Probably because I have had time to think about it. With the transplant, I didn't know when it would be and when the call came it was just crazy surreal. I don't think it gets any easier to let your child be taken to the O.R. no matter how many times it has happened.
My heart is so full tonight as I think of your experiences with Hadley. It is so hard! I am so grateful to have you for a friend. I can read about your experiences and feel like I can understand in a small way, what you are feeling and it brings those emotions that I try to hide away, to the surface. Hang in there!
love,
Rebecca
Misha, my tears are still running down my face. I feel so priveleged to know you. I watched Hadley during the shows I saw, and she was, by far, the one having the most fun. She's so cute, I was misty-eyed. Maybe I should have Carlie come have some words of comfort before she goes for her treatments, whenever they are. We're off to Disneyland to get some fun before the dr's appt's start. =)
You guys have gone through so much-What an incredible daughter you have and how amazing you and Steuart are!! You are in our prayers.
I too have tears. What a trooper she is and you and Stew too. I didn't know she'd had 5 previous surgeries. I feel humbled as I watch what you go through with such faith. We send our love and are glad we got to see Hadley recently so Sedona understood who I was reading about and why I was crying.
Mish - as I sit here bawling I wonder about who you and Hadley were before you came here - were you the best of the best? Did Heavenly Father sit the two of you down and explain some of the trials you would have and did you smile and say - no problem, we can handle anything....because really, I don't know anyone in my life that could do this better than you. You make it sound easy and I know it isn't. You take motherhood to a whole new level and I think I am luckier than anyone else simply because I get to say you are my cousin. If only I could name drop you because I would say "no I know the best mom in the world and she is MY cousin." OK, so maybe I will do that! Tell Hadley that she is a miracle and we think she is THE coolest 7 year old we know.
I believe the answer to Taylor's 1st question is a resounding 'Yes'.
I love Hadley. There's a special place in my heart for her.
Your family is taking these trials in stride Mish. Great examples to us all.
I Love you Hadley, you will always have a special place in my heart. :0)
(so does your mom)
I love you, Mishka. And you, Haddy! What an amazing team you two are. Your whole family has been in my prayers and you still are. Thank goodness it's not Friday anymore is right! Now on to a speedy recovery!
Wow, what a tough family. I hope that the recovery goes well. Best of luck to dear Hadley.
What an amazing little girl you have, very resiliant. Glad that things went well and Hadley is on the mend. Happy Healing Hadley!
Oh my goodness Hadley and Misha! What an ordeal, to say the least, what a list of ordeals! I am so glad she did great. . . AGAIN! I have to admit, there is something about these CI kids, they are some tough kiddos. If there is anything we can do for you guys, let us know. Hope to see you all sometime soon.
Oh, sweet Hadley. I am so sorry to hear that you had to have another surgery. Stewart and Misha, you two are amazing parents. Our thoughts and prayers are with all of you. P.S. We are sad that you are not headed to AZ this year. Maybe we will see you this summer. Lots of love,
The Norton Fam
Hi Misha!
Sorry we didn't get a chance to talk tonight. H-A-D-L-E-Y did such a brilliant job at the speech fair!
I had no idea that she/you had been through such a huge ordeal recently. You really are amazing and a great example to me.
Hope we can get together soon!
Your posts are always so great. I almost hate to blog after reading yours because they're so well written and mine are just a jumble of words. From what you've written, I don't think that Hadley thinks she has a "disability." It is absolutely amazing to me that she has been raised to believe that she can do anything she wants and be anything she wants. Who's ever heard of a deaf child trying out for a MUSICAL?! That's amazing. She must have really great parents :D There are amazing things planned for that little girl.
Oh my! What a week! I can't believe how brave she is, I hope she has a good recovery!
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