Day 4

Yesterday was day 4. Yesterday was a GOOD day! I will say that this was the official turning day. Day 3 was improved pain wise, but all day/night she was seizing and holding her breath with each seizure, making her heartrate and oxygen levels drop pretty low. Yesterday though, there was none of that. At times she appeared to be at baseline, chillin like a villian. It made my Momma heart so happy to know that she is feeling good!

Her back is still bandaged up. I can't see the incisions yet, but I do know that she was cut whole body length wise on both sides. I'm not going to lie, i'm pretty freaked out about lifting/moving/holding her. I am so afraid im going to hurt her. Those rods are so big compared to her dainty little self. I'm afraid i'm going to rip the incision open, though I know that that's not likely. When she had her biopsies on her thigh as an infant, I was afraid of the same thing. I don't know why my mind always pictures the skin being pulled open on accident. Sorry, not a pretty image.

Anyhoo.. today is my Grannys memorial service, so Jim went to be with her this morning, and I will go back to my Lady Bug this afternoon. P.s. You all know you are welcomed to post comments on here. I can see that SO many people have viewed Bugs blog here, and I love that people care and want to know, but don't be sceeeeered to speak up people! XO

Scoliosis pictures

Here are some before..soon to be during, and after images of this journey.
                                                 

Before going in... irritating her with all of my lovins...

... and for her official "before" image. I really should have done a lot of different positions. 

I do have a few other images of her laying on her side with me on the bed before she went in, I will add those later. Here is the X-ray image taken this morning, the day after surgery. It shows the titanium rods on her left side. Original plan was to put a rod on either side, but her ribcage was protruding too much on the right side for a rod to be placed. I know it looks like they are going down the middle, but the longer one is in the left shoulder blade, going to her hip bone, and the shorter one is in her ribcage, going into her hip bone. You can see her spine curving to the side. Her BODY already looks straighter, she doesn't look like the letter 'C" laying down anymore! The curved spine you see there is a 35% improvement! I am very happy with the results!! I just cannnnnnnot wait for her to get out of this damn pain! 

Recovery

Ack, I am so sorry it took so long to get her update on this thing. Believe me I wanted to do it earlier! The laptop would not connect to the internet and my cell phone died right after she was wheeled in. The charger was in the truck, and I said screw it! My fabulous husband just brought me another laptop....ahhhh!

Surgery went well. It seemed to have gone on forever, but all in all, she was back there from about 8:15 a.m. until 2 p.m. She is now in PICU, and we are trying to get her comfortable. She seemed pretty comfy for the first couple of hours, then steadily climbed into, "I am in pain over here!" We have given her Morphine and Valium and she is still acting out. Her heartrate is high, she is grunting and moaning, developed a fever, urine output slowed, and her seizures are doing their, " Our host doesn't feel good, let's go wild!". This is not my comfort zone with her. This is such unfamiliar territory. Give me a hefty respiratory illness and I will be okay ( well......) but this, this sucks. Her fragile little body now has 2 titanium rods screwed into it, and it hurts her. This painful ordeal is also such a Blessing to her precious body. The surgeon told us he took her from a 100 degree curve to a 65 degree curve, that is impressive! I am shocked that I can already see a difference on her. Her surgical site is still covered, but I can already see a difference with her ribcage, that's nuts. I am beyond excited to see what the future holds for her. Can you imagine how much more comfortable she will be in her wheelchair and in her carseat?! I can't wait! Thank you all so much for your Prayers, I can tell you that I felt them. Last night was ugly for me, but today, when I should have been a WRECK, I was pretty cool, calm and collected. I felt peace and virtually no fear. I am trying to upload a few pictures but I keep running into problems... so those will be at a later time.

Signs? Hogwash! (.....?)

Do you pay attention to signs around you? Not the tangible, large red signs that tell you to start slowing your car down, but the ones you cannot touch? If you see signs, good or bad, do you believe in them? I would like to believe in the good signs, not the bad, but can it really only work in my favor? That's a pretty self absorbed idea I suppose. I am sure that everything with Kira tomorrow will go fine. Am I scared to death? Absolutely. However, if one were to believe heavily in signs then I am trying to be told something for sure! I just find it extremely odd that these things keep happening in connection with this surgery planning. Here's the  craziness...

-On the way home from her pre-op appointment, I hit and killed a bird. I have never hit ANYTHING with my car.

-Today, while trying to get back into my Navigator at the hospital after doing her pre-op lab work, my car alarm goes off, and will not turn off. I could not get it to turn off for over 5 minutes. This has never happened before.

-Tomorrow, the day of her surgery, we are due for a fluke storm to roll through. Sporadic thunderstorms all day the forecasts say. Then Wednesday, we are due to get back into our 100 degree Summer weather.

Re-read those 3 things if you must, because it's bizarre. It trips me out, but she is still going to go through with her surgery.

2 More Days

It's Sunday night, and Kira's surgery is Tuesday. Quick rundown... her scoliosis has progressed so dramatically, that it has turned into a life & death matter. I know that sounds dramatic, and I cringe at the drama of it, but in reality, that's exactly what it is. The Orthopedic Surgeon has been ready to do the surgery on her scoliosis for a few years now, but I have always said no. She goes through so much, I did not want to put her through that and the painful recovery. I always said that I would revisit the idea of this surgery if A) It was hindering her lung function, or B) The scoliosis itself was causing her pain. All of a sudden it seems that her spine went through a curve spurt and just went nuts. It is now curved so far that it is against her chest wall, squishing her lung. It is making her ribcage protrude on the side, behind her shoulder blade. You can definitely see the effects when she is "bad side up". She works harder to breathe and her oxygen is lower on that side. I recently found out that her left hip is dislocated, from her body being curved and just not right. I Pray that she can be doped up enough to not feel the tremendous pain that is sure to follow this surgery. There is obviously no need for her to do the standard exams the days following this serious surgery.. so let's just keep her under for about 2 weeks and monitor her vitals! I know this is not going to happen, we can't keep her "under" but let's drug my Ladybug up as much as we can! I know she will feel SO much better when this is all behind us. She will be a new person! Her body will not be straight right out of the hospital, and honestly, it may never be "straight", but it will be improved. Every 6 months she will be put under to have her rods lengthened. Short and steady wins the race. I will save you all my emotional vomit regarding all of this, and just keep your updates factual. :)

We HAVE to do this!

I was just scanning Facebook as I do randomly through out the day, and saw something absolutely amazing that my friend Kara posted. I clicked on her link, saw the most beautiful, literally breath taking photos ever. As I scrolled down the page, I obviously could not help but to picture Kira in those images, and it made me cry like a girl in one hot second. Enjoy these photos, share the images with your friends who have a loved one with similar physical challenges, so that they might set up a photo shoot like this, as I completely plan to do. I would LOVE your suggestions as to the background and poses we should do for the Beauty Queen!

http://mashable.com/2013/04/17/photos-imagination-boy-muscular-dystrophy/

I wish I were computer savvy enough to show the page here, but you will have to click on the link. That way the photographer gets his due credit by people reading about him and seeing his other fabulous work! ENJOY! Look forward to hearing from you!

Like a car

You know that phenomenon where you take your car to the mechanic because of a nagging sound, and viola, it is mysteriously gone as soon as the mechanic investigates? This is not the first time Miss Jean has resembled a thumping car. She is okay, does not have pneumonia, but does have something going on. She keeps dropping her oxygen levels. Going down to 78%, which is quite low. I put her on oxygen last night, and took her in today for a Dr. appt. to ensure that whatever this is, is not turning into pneumonia. While we were there, the MA put the pulse ox on her, and......she was registering at 96%.. she's cured! All I can think is REALLY?! Anyhoo... great part is, her x-ray resembles her last x-ray that was taken during her last admission with pneumonia, which would be the one that shows the best image. They were almost identical. So it is now my job to be aggressive and not allow this "thing" ( the illness, not Kira) to develop into the nasty beast that we know so well. :) I have a good feeling that it will not.