Braces....again. February 2018

So to begin with, over Christmas Kate decided it was time to chop off the hair.  This was a momentous occasion so I took a before and after photo. We were in the salon in the middle of her hair being cut away and I said "huh" out loud and Kate asked me what I was thinking. I said I believe this haircut makes you look older. She started laughing and said "Mom, that's kind of the point." What?!?   With her being 5 8'' I am seriously considering stickers to put on her shirt that says I'm only 14, back away.

The kids and I went to San Francisco for a week and spent New Years there. Museums, food, the works. Had a wonderful trip. And yes, she looks far too old. And adorable too. I am one blessed mom, all loving and wonderful children.

 Braces, seriously, again.  Kate doesn't have room on the top for her canines to come down and all of her top teeth need to rotate to the right. I guess the one bright side is that her spacer has worked and her palate is still wide enough to work with.  So, here we go again. She will also be using rubber bands this go around.

The braces will be put on March 12th and she's soooo looking forward to it. Her orthodontist thinks they will be on about 20 months. Which in teenager time is approximately 5 to 10 years or so. She is such a good sport about it, as she is with all things. She takes in the new information and a few minutes later seems to be at peace with whatever she now has to deal with.

The nice thing is no more mouthful of putty to get ready for the braces. It's all done with computers now and takes just a couple of minutes. Grateful for the little things.

Her back is healing well, she had X-rays before the holidays and things are going well. Her back pain is almost nil, almost. Her feet still hurt whenever she isn't wearing shoes, which she does the moment she wakes until the moment she falls into bed. Other than that she is holding steady.

Side note on her X-rays (and my life): We walk into the room and they start going through the usual questions and the tech turns around and asks me if there's a possibility I might be pregnant. Without missing a beat, my lovely, precious, daughter starts laughing and says "there's no way my mom is pregnant. Like no way."  While the tech is trying very hard not to laugh, I turned to Kate and said "Thank you, sweetie. Thanks" and that pretty much sums up my life.  Still single, happy, employed, and barring a few horrid days in November, I am upright every day.

Update on Miss Kate September 2017

 I can't believe it has been so long since I have updated Kate's blog. So here's the quick stuff. Kate's back has taken some time to heal, as you might imagine. Even now, almost 10 months later, she doesn't like full on hugs and says she is still numb down the full length of her scar.

Dealing with life unable to bend has it's challenges. Her neck gets quite sore at school looking down at books all day. Picking things up from the ground or from low shelves also requires a lot of knee bending. She can still swim but it's a whole different ballgame.

Over the last few months I have noticed that Kate keeps her shoes on right up until she goes to bed and they are the first thing to happen when she gets up in the morning. Of course when I ask if her feet are hurting she has a sarcastic response that I must be imagining things. She has also been expressing, non verbally naturally, that her hands hurt as well. I figured there was nothing to be done, but took her to the doctor anyway. It's all a lack of fat padding on both her feet and hands that causes pain. Mostly in her feet. While seeing that doctor it was determined that her legs and hips are very tight and he recommended physical therapy.

You can see her doing some exercises here. We are also working on regaining her arm muscle strength for archery. Her therapist mentioned that some kids who grow very quickly and who are tall often have some lack of flexibility in the legs and hips. She definitely grew quickly last fall. Overnight even.

Kate also had another set of x-rays on her back and everything looks good. She had her heart echo and it has remained mostly stable. She did have another breathing test and it was determined she isn't breathing much better than before her spinal fusion. She needs more exercise. It's a fine line, get exercise, but don't stress the heart and good luck finding something she can do that doesn't hurt her back or feet. So, there's that.

Kate has been asking to be home schooled for a couple of years now and she is finally getting her wish this year. She is doing an online school with live classes every day. So far, so good. They are really working with her for the PE portion of the credits. Physical therapy and archery count.

She's such a beautiful girl, inside and out. This picture is from the first day of school. She grew out of her chair just a little bit. Don't worry, I got her a new one. :)

Almost Two Weeks Out

Ice Cream and a Smile

We had our first outing! Went to the drive thru for an ice cream cone and then stopped at a gas station where Kate actually walked in, rocking her Pooh Bear comfy clothes, and picked out a piece of candy. No Halloween for this girl after all. Funny how you don't care about being in pajamas or how things look when your just living in the survival mode of life. I was just incredibly happy that she walked as well as she did. Pretty cute pajamas and beautiful girl anyway.

By time we got back in the car she was seriously tired. But we had some smiles, sang a few of Kate's favorite songs, and got to see something other than the inside of my house. Straight to bed afterwords, of course. I stayed with her and we watched Jimmy Fallon funny hashtags on YouTube.

On Thursday the 27th Kate had her first day of "school" with a tutor at home. She lasted a whole 40 minutes sitting up and concentrating.  She is coming again tomorrow so today will be full of homework. And that's only one class. Her teachers have decided which things she actually needs to turn in and which things she can skip. Her tutor said none of her teachers were worried about Kate and her grades. She's a straight A type of girl.

Yesterday Kate had a couple friends come and visit for a while. They brought goodies and Kate introduced them to 5 Crowns, a Poll family favorite. She had a great time, all smiles. As soon as they left it was time for a pain pill and lay down for a while. Every time someone asks how she is feeling she just says fine. I guess that is what we all do to a degree. Life and body can be falling apart and we all just smile and say fine. Kate has decided to sleep with me a few times. Honestly it's rather nice. I don't have to get up twice a night to give her pain pills.

So tomorrow, Monday, is our two week mark. Feels like a lifetime ago. Kate has been itching, literally to get her dressing off. She convinced me that today was the day. So we gave her a shower and then sat her on the toilet all wrapped up while I tackled her dressing.

We were given little pads, similar to alcohol pads, that take off the sticky stuff that medical tape leaves behind. I was armed with those, scissors, and a warm,wet cloth to help this process be as painless as possible.

Kate watched Bolt on my phone while I worked away. It probably took 35 minutes. She has some steri strips that, will fall off on their own, that decided to keep some of the dressing. Hence the scissors. So much yellow sticky stuff on her back, we were laughing and being silly the whole time. Once in a while Kate would say, I can't feel right there, or that feels like a horrible bruise. Needless to say, that is why we took our time.

The incision is incredibly thin and looks so much better than I thought it would. I think this will be a very nice scar. There's still some marker and sticky goo here and there, but a few showers will help take that off.

Looking Good!

We are acting a little more cautious again, even her hair laying down on her back kind of hurt. Small steps, but we are getting there!

HOME!!

Hanging out with Baggy

So happy to be home. Kate needs help laying down, sitting up, and walking. We have gotten pretty fancy with the pillows and getting her comfy, it's an art really. I think we finally have it down to a science.

She still gets nauseated at times and dizzy for sure. She said she can't understand why she has no energy. But she has more energy than she realizes. I have gotten her laughing pretty hard a few times. So, so good to see. She tells me I'm killing her and we have to wait a few minutes for her to breathe so she can move again.

We may or may not have more than one cat in the house....needless to say, we do not have a lap cat. But this guy, Baghera or Baggy,  is getting really close. We call him our next to our lap cat. Kate loved having him close to her. Much better than having a cat jump on her, which may or may not have been this same cat.

Peace Sign from the Princess

After all the arranging of pillows and blankets and cushions for Kate's bed, I started calling her Princess and the Pea girl. Bed is now a solid thumbs up. Just need to make sure she changes position often enough.

Sometime she just wants to hold my hand and have me sit by her. I've watched more Donald Duck, Goofy, and Pluto cartoons in the last two days than I have in years. We still have pain pills every 4 hours. That includes waking up around 11 and 3 am every night. Up again at 7 and so on.

She has started taking a few steps on her own and her balance is actually decent. But she still gets dizzy and feels like she has no energy. One big issue we have run into is her height and that fact that she cannot bend.  Washing hands, she desperately wants a higher sink. And brushing teeth is a joke. She has to use a cup to rinse and spit. She needs a house especially designed for her new body.  Loving this time with her. She is as funny and witty as ever. How I was blessed with such amazing kids I will never know. Abby and Noah have been cleaning the house, doing anything asked of them. Both wait on Kate left and right. So blessed. I have been trying to live my life a little differently the last few months. Living each day in the moment, not thinking that some time in the future will be better or if I just had this or that I would be happier. No, live in the moment. Appreciate each moment and day. Some days its easier than others. I am also trying to live with gratitude. Also takes practice.

Kate starts with a tutor on Thursday. Test run to see how long she can sit up and focus. Will likely have to build up to a full two hours. Thank you to everyone for your thoughts, and prayers.

Out of ICU

A visit from Noah

We moved Wednesday night out of the ICU and into a really nice room where I don't have to buzz in and out all night to use the restroom. Small things mean a lot when you're up all night. They took our her central line but she still needed to be on oxygen for the most part. We did more breathing exercises and she slowly weaned herself off the oxygen. Which was nice, because she hated it.

The other kids came to visit but Kate was usually pretty out of it. We had a time adjusting her pain meds. Finally found the magic combo that kept her relatively comfortable but also kept her breathing and able to wake when she needed to. She had her foley removed and was forced to get up and walk. The first couple times were pretty brutal.

On Friday we were told they needed another X-ray of her back. We went to X-ray and she had to stand up during the procedure.  They put a protective apron on me so Kate could use her arms to balance on my shoulders. I'm pretty much her crutch given our height difference.

X-ray 

We finally got the okay to go home but Kate was nervous about the couple of stairs I have going into my house. Physical therapy came and took us to a stairwell so Kate could practice going up and down. She did wonderfully. It calmed her nerves and we packed up. We got home around 5 pm.

We had the blow up mattress from her hospital bed put on her bed but she hated it. I finally put two doubled blankets over it and she was comfy. But, it kept making her slowly slide to edge of the bed. She has found herself in my bed a couple of nights as well.  I finally found the right combination for her bed. One egg crate mattress, and two thick blankets doubled under sheet. Yay!

Ready to go home

Our Stay in ICU

Not quite awake yet

After we talked to the Dr we were led to the waiting room up on ICU. You have to pick up a phone to be buzzed into the ICU unit. In the waiting room you can see patients being bought onto the floor. They said we would see her go by and then it would be another 40 minutes or so. We did see her go by, I ran to the window closest to her. She was still intubated, which I hated seeing. So dumb, I'm a nurse. But seeing all of this on my girl just feels different. Finally we were allowed to go into the room. She was no longer intubated when we saw her. She had two IV ports in both wrists, a central line in her neck, and an art line in her left wrist monitoring her blood pressure. Oxygen on, pulse oximeter measuring her oxygen, and pads on her chest measuring how many respiration's she was having. This was became our issue. Breathing deeply hurts. 

Art line and IV  

Kate did kind of wake up, enough to us that she hurts. Excruciating pain, that is how she later described it. It took a few minutes to get the narcotic from the pharmacy for her PCA so we were finally able to give her some IV morphine. It helped somewhat, but I have to say those first 24 hours were rough. There is absolutely NOTHING worse than seeing your child in pain and not being able to take it away. The second night I thought she was asleep, I was leaning over her, holding her hand and I said out loud that I would trade her this misery if I could. She never opened her eyes, but she said that wouldn't be fair and she wouldn't want that. I told her I would still do it, I love you so much. She just squeezed my hand.

There is one chair in the room that kinda lays down like a bed. It wasn't too bad honestly. ICU is full of machines going off all night. Here is where being partly deaf works in my favor. I tell Kate to tell the nurse to get me if she needs me and I simply turn over. Sounds gone. The biggest bummer was that to use a restroom I had to leave the ICU completely, which means having someone beep you in and out. One time I was coming back into the ICU, I pick up the phone to say I'm the mom of this patient, yada yada, and the lady, who I can see through the glass on the door, looks at me, says her name and then follows up with "I see you." The door opens and in I walk. As I am nearing her desk it dawns on me that someone else had opened the door with their badge, and the lady hadn't said "I see you," she had said ICU. I'm half embarrassed and half laughing at my stupid, tired self when I reach her desk. I apologized for just walking in and told her of my confusion. She was laughing at my stupidity as well by time I walked away. Marci on little sleep is not a pretty thing.

Every time it was time for a medication or pulling out her drain,  Kate would ask if it involved needles. This poor girl had tubes in both arms and her neck. But as long as we said no needles involved, she was fine. 

No one deserves what she has gone through, but I sometimes get so angry that such a kind hearted human being is being put this. Yes, I know, maybe that's why its her or maybe it makes her the kind person she is. But for right now, I want to be mad about it. 

Side view

X-rays post-op.

All straight now

 

Monday October 17th Surgery Day

Hair all braided and ready to go 

The night before surgery we had aunt Traci here to french braid Kate's hair.  I picked Kate up last Friday for her last day of school and the second we stepped out of the office she said "I'm nervous." First time she has said anything about being apprehensive about having surgery. I did what I could to calm her fears, but it didn't help that we were on our way to Rady's to get her blood drawn.

You have to know that this girl HATE's needles. With a passion. We got called back to get her blood drawn and she told the phlebotomist she was nervous, they told her to look away. She said it's easier if I watch. And she did and it was fine.

We had to be at the hospital by 6:30 am and Kate was straight out of bed. Traci and I were the tired ones.

Since Kate had mentioned she was a little nervous I had told the anesthesiologist and she suggested a little pre-surgery medication to calm her nerves. Turns out it was versed. That stuff is strong, and tastes terrible, according to Kate.  She started getting little loopy, we even recorded a couple little videos. She was laughing, we were laughing, good way to start the day. When it was time to go in she just waved and smiled and off she went.

Happy on versed pre-surgery 

We were walked out the waiting room and that's when I lost it. Those kind of tears that are so hard and fast it literally hurts your throat because you're trying to stop yourself from crying. Traci was my rock.  I had asked the liaison, a nurse who keeps families connected to the what is going on in surgery, that I need just a thumbs or something every two hours. She was very accommodating. Once she was 15 minutes late, luckily she gave me her number. 7 hours is a long time to wait to know if your baby is OK.

We finally got the call that she was finished and we went in to talk to the Dr. He told us that everything went fine. She had a slipped disc in her lower back that needed to have more work done on it than the rest. She was fused from T4 all the way down. That is a long, long incision. More work was done on her left side so there might be more swelling on that side and more side effects.

On her way to surgery