Yesterday was awful. KayTar knew where we were going from the moment she woke up. Mommy doesn't wake her unless we have Somewhere to Be. And sadly, the only place we have to be that early is the hospital. She was withdrawn all morning and once we got in the car and onto the freeway she started crying quietly and saying, "No docdahs. Don't want to MomMom. No docdahs." I told her we had to see the doctors today and that she would be okay. "You okay, KayTar. You okay." she repeated with tears in her throat. I almost flipped a u-turn on the freeway. It was just too sad. I let her pick some music (Maroon5 Wake Up Call, if you'd like to know what she's into these days) and tried to help her forget where we were going. It worked for a while. But one we exited the freeway she knew where we were and it started all over again. I felt every Mommy instinct in my body raise themselves in protection, but I had to keep driving. I made myself a promise, though, after yesterday, we are done for a while. No appointments. No doctors. No nurses. Unless someone gets sick, of course. She deserves a childhood that isn't so filled with poking and prodding. She deserves a vacation from it, if we can't quite manage a life that is free from it. I told myself that we would get it all done, and then be done. And so I kept driving.
The ABR went well actually. We had a different nurse, Martha, bless her soul. The first time KayTar wretched up the sedation meds, she said, "We have suppositories, do you think that would work?" "OH MY GOD YES! THAT IS THE ONLY WAY WE CAN GET MEDICINE INTO HER! WHY HAS NO ONE EVER TOLD ME ABOUT THESE BEFORE? I LOVE YOU MARTHA! MARRY ME! MARRY ME!!"
And so Martha got us three green sleep-inducing suppositories and they went right up the poop-chute while KayTar practiced counting them. She immediately curled up on my chest and was wholly content. It still took about an hour for her to fall into a deep enough sleep that I could lay her down, but it was a dream compared to the previous nightmares. Suppositories are my best friend! Martha is my hero! YAY FOR BOTTOM ROCKETS!
It went well. KayTar's left ear is largely unchanged, although she had a slight worsening in one of the frequencies and a slight improvement in the opposite frequency, neither is a large enough change to make a difference. They ran the test that helps predict if an ear is about to fail and her right ear still passed, so that is good. The audiologist said it is important to keep checking though, because there isn't a time limit on when it could fail. It was an interesting experience to watch them check her left ear. It practically flat lined. It made me sad to see that basically, that ear really has has flat-lined. I knew already, of course, but seeing it visually was a bit different. We left with an appointment to be seen in 6 months instead of 3. Thank God for little breaks.
Then we went to the 4th floor for her KUB. The receptionist printed our stickers and sent us to the 8th floor. We checked in on the 8th floor and the receptionist wanted to see our order from the doctor, which was still on the 4th floor. So after some floor jumping, we got it sorted out. Somewhere between floors, KayTar had diarrhea through her pants. I took her to the bathroom to discover I had already used her last diaper during the ABR. So I went back to the receptionist and asked if by chance they had any diapers handy. She said they would give me one in the x-ray lab. So we waited a minute or two and were called back. KayTar's tush was saved by the kind radiologists and their stockpile of Pampers. Because I had to answer the question, "Could you be pregnant?" honestly, I had to wait in the hall while they did her x-rays. I heard her ask for me twice, but the techs did SUCH a wonderful job with her. They had her count and say cheese and kept her mind off the noisy giant camera. She didn't even cry! Big girl.
After the KUB was done, we ran to the cafeteria to grab a quick lunch. KayTar has milk and Cheetos. I had a Chik-fil-a sandwich and a diet DP. After swallowing my food whole for the most part, I called the pediatrician's office to let them know we were headed in for her flu shot. I know everyone has an opinion about the flu shot, but with KayTar's propensity for getting really ill from minor things, we're not going to play roulette with this one. We got there, signed in, and waited maybe 5 minutes before being called back. We saw the doctor in the hallway and said hello. The nurse gave KayTar her shot and she didn't even get out a whole yelp before it was over. She got a shiny star bandage and we were on our way. The shot was actually the easiest part of our day.
We left the house at 6:45 and got home after 2pm. And we were oh-so-tired. Of course KayTar couldn't nap because she had been sedated all morning, but she petered out about 4:45 in her chair.
Josh (who I (perhaps unfairly) don't usually think of especially emotionally astute although he is incredibly caring) came in the door and said, "She needs a break. She can't keep going like this. She's going to hate the doctors again. Every time she goes she is being poked and prodded. We have to figure something out." and I said, "You know, that is exactly what I had decided on our way out this morning." So we talked about it and after this week, she is going to have a two week vacation from EVERYTHING. No therapy. No doctors (unless she is sick). No tests. Nothing. After the two weeks, we will reinstate therapy, because we can't let those go for too long, but we are still going to try not to have any doctor's appointments for at least a month, if we could make it to the new year without any, that would be a dream. She deserves a normal childhood, even if we can only manage it for two weeks every once in a while. That in itself makes me a little sad. I shouldn't have to block off time for her to be a child. She's been having episodes for over half her life. We've been in this diagnosing hamster wheel for over a year now and we just have to take a step back, even if two weeks is all we can manage. She's only two and a large percentage of her experiences and memories are caught up in doctors and nurses and tests and needles and trips to the hospital and IVs and electrodes and hospital bracelets. Sometimes it just doesn't seem all that fair for her. We can all tell it is weighing on her right now.
Last night at bedtime, she was crying in her crib. Not a "I don't want to go to sleep!" cry, but a sad cry. I went in to check on her and she said, "Carry you, MomMom?" and so I picked her up. She put her head on my shoulder and touched my mouth with her palm and said, "Singing, MomMom?" and I said, "What would you like me to sing, sweetie?" and she said "Whoooa, what you doooo meee.." and I said, "Okay, baby." and sang through Hey There Delilah for her. When I was done, she patted me and said sleepily, "Good singing, MomMom." and I said, "Sleep time now, sweetie. See you in the morning." and she rolled over and curled up in her Gee. As sweet as those moments are, when she's feeling emotionally secure, she doesn't ask for them. I know that when she needs those extra cuddles or a song in Mommy's arms at the end of the day, it means that it is all getting a little too scary and she needs me to chase it all away for her. And so I will.
ETA: My dear friend Katie lost her mother suddenly last night. Won't you please, please stop by and leave her some comforting words? I know nothing can heal her pain, but it is nice to know people are thinking of you when your heart hurts so very much.
Kyla, as awful as this is, she is lucky to have you two as her parents. You're making her life infinitely better than it could have been.
2 weeks off is a wondeful idea! I hope it can be longer still without a doctor's appointment! And I hope you'll get some good news from the lab really soon!
Good luck at the doctor's for YOU!
I think stress is very, very powerful.
What a long and tiring day for you both. When ever I read comments about people like Martha the rockstar nurse I am flabbergasted that no one thought of that sooner. Thank you, thank you, thank you. My kid is a puker so you know I will be using that info.
I am so glad you have decided to take a break, you all will benefit.
Poor girl--the stress of it all must be overwhelming. I remember going through all those horrors with T., and rest assured that once it does get better, and the doctor visits become less frequent, she will forget about the horrors and fear of it all.
Hugs to all of you...
Poor you, poor her.
I think you both need time off. and if I can kick this damn cold i have AGAIN I think a playdate might be in order.
The part about "Hey There Delilah" made me smile! A two week break sounds like a good plan... poor little kid! I hope you get some answers soon so you can take a two MONTH break someday.
We send big time hugs to all of you. That Kaytar is precious!
Your little bowed-headed Supergirl at the end brought tears to my eyes. You guys are GOOD parents to respect her limits. GOOD.
Oh, Kyla -- you are all my heros, that's all I can say.
Well, that and get yourself to the OB/Gyn! Pronto, girl!
You all deserve that break. Let's hope you don't need a trip on your own behalf (even if I am tempted to tell you to make an appointment anyway). ;)
And I just want to smoosh Kaytar's sweet face. Poor girl.
Supergirl is breaking my heart. You and Josh are making a great decision about the break, I think. Your girl is a champ. It's sad, too, but also sweet, to get to sing their fears away. That time is pretty short ...
I think the 2 week break is an excellent idea. A well needed and deserved break.
I hope yall get those test results soon. Waiting is always the hardest part.
I still can't believe AF hasn't shown up. Holy moly!
That's just all so wrenching, Kyla. Those photos broke my heart; her eyes are so bruised and shadowed.
TG for the two week break. Yes, I think that is a great idea.
Hope the AF stuff and lab results are let loose. Soon.
Using My Words
I am devastated for Katie A. too. I'm so glad you girls are such good pals.
And sweet KayTar...oh, her asking you to sing is just breaking my heart. I'm so glad she's going to get a break and I just pray she doesn't get sick and can stay away from doctors for the whole year. Till her 3 year well-child.
AND, my theory is that your AF is still stress related, yes, you've been more stressed before. But at the same time, this is a way of life for you now...in the past, with brain tumors and such, you didn't have such a new way of life and the possibility of it all being over with just some meds following an LP. Ya know?
And also, I think you might just want another baby. :) And so that, mixed with the possibility of KayTar having a diagnosis and treatment that may allow for another Tar is why I think AF is holding out on you once again. :)
But that's just me... :)
Ok, it's sad that she's feeling drained, but it is so AWESOME that she's aware enough to ask for extra cuddles and singing! Great idea on the break. You guys rock!
I just can't get over how lucky she is to have you two for parents. And those pictures are so precious, I just want to reach through and shower her with kisses.
Maybe with your break from Kaytar appointments you can sneak in some time for yourself. Schedule a massage or a pedicure, treat yourself to something that feels good. You've earned it momma bear.
She looks frail here, and that makes my heart ache.
A break from the medical establishment. A good thing.
Oh she looks absolutely wiped in those pics (B has fallen asleep like that). I think the break is a great idea.
Thank goodness for two week breaks, friend. Phew! Sweet, little Kaytar!
I'm glad to hear Kaytar has been granted a reprieve! She is ready for it I think too! Those pics are so sweet, so sweet . . .what an angel!
Sweet girl. You are such smart parents. You all deserve a break every once in a while. Enjoy these weeks.
sweetness....those photos nearly killed me. If you can give her a break do so.
and I hope Aunt Flo visits soon (if that is what you want....)
I love you guys. Your KayTar just squeezes my heart. This is a perfect decision.
Yay for bottom rockets!
When a needle is the easiest part of your day, you know it was a real tough one. It makes me happy to know that KayTar is having a break for two weeks.
I'm glad you can give her a break. i often do the same with willow ... we'll stop therapy for a month or two. it makes an enormous difference...
One of the things I hate about these pseudonyms we use for our children is how they make us back away from expressing their true feelings. I don't know if I am saying this right but when I read "You OK, Kay-Tar." I have to stop myself and mentally insert her real name b/c the pseudonym distances her from that very real anxiety she is feeling. I find this on my own blog as well. When I am really hurting or when my daughter is, all I want to do is use her name, her real name.
I don't know why I'm saying this other than to let you know that I am making that switch out with your kids now. I am calling them by their real names in my head.
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