That red stuff....

.....was low. Her hemoglobin ( red blood cells ), and iron were quite low. She needed to have a blood transfusion yesterday. She has never needed one before, it was a trip. It was insane to see a stranger's blood dripping into my child. I told the donor "Thank you" out loud... i'm sure the universe carried it to him/her. Her lips and skin were pale, but her oxygen levels were beautiful at 99 and 100%, with the help of just .5 a liter of oxygen. I didn't understand why she was pale, when she was reading fine on oxygen levels. I also didn't understand how she was at 100% with such a small amount of oxygen support, but when we would take the teeny bit of 02 away, her levels would drop instantly. It had me perplexed. A wonderful nurse explained to me that it could be that her blood count is low, and she is going to suggest a CBC (complete blood count). Red blood cells are your iron rich cells that carry oxygen through your body, if you do not have enough of them, your iron is low (anemia), you don't have enough oxygen flowing through you as you need, and your heart rate is increased because it has to work extra hard to pump blood through your system. Kira's heart rate has been high since she was admitted, but I figured it would not come down because she was clearly going through a painful recovery, and her heart rate is one of our leading signs of distress with her. The donor blood transfused for 4 hours, but within the first hour, her lips and gums were pink again. The skin around her eyes.. healthy looking and her heart rate relaxed. Yay! I thought I have seen everything with Kira, but this was new territory for us. She must feel like a whole new woman. There was a large part of me that was thinking * what IF since birth she was always had seriously low levels of hemoglobin that secretly went under the lab radar and this transfusion is what she needed for 8 years to wake her up*. Long shot I was sure, impossible even. But hey, you can't help the brain from going on little vacations every now and again. Care for a laugh? When the transfusion was over, I was snuggling with her and asked her if she can hear me, and if she is awake, and yes, I was a little excited to see if I could perhaps get a response. See the thing is, she has had a million CBC's in her life. Her hemoglobin has always been fine. I knew this wasn't going to be her medical mystery finally revealed. I also know that being anemic isn't going to cause her microcephaly and seizures. But since my Momma brain went there, I figured I would honor it and test out that theory. Nope, she's still Sleeping Beauty. She must feel so much better! She will now have iron added to her daily meds. One of my Sisters from another Mister came to see us last night with her beautiful girls, and Kira was so happy to see her. As soon as Margarita was talking to and touching Kira, she kept rolling her eyes open. Such a beautiful response. Mog has always had a way with her. There's a deep connection there, that one cannot explain. It's pretty cool. Okay, there is my update about Sisseroony. Overall, she is doing fine. Morphine is keeping her comfy and her wound has the wound vac on, but is not draining, which is great. They are going to teach me how to do her I.V. as she will need to come home on I.V. antibiotics for up to 6 weeks. Her infection was pretty gnarly in there, and needs the big guns. I HOPE I will just need to access the tube hanging out of her port, and not need to do the poking myself. I am a needle phobe. I do know that her port line needs to be changed once a week, not sure yet if I will bring her to clinic to do that or handle that myself. I think I need to practice on an orange or something a few hundred times first, do they still do that in school? ;) Alight, anyhoo.. chat with you all soon.

Thank you.

These past few days, I have fallen short of words. I honestly cannot verbalize how warm it makes my heart to see people reaching out to me. I'm not going to lie, all of the amazingly kind words of me however, embarrass me. I don't take to flattery very well.. I say "Thank you" but I really want to say, "Stop it, that's you!" or "Right back at ya Kid!" The support I have received from you all, and your friends and family has made a difference. It all truly did. I don't want pity, nor do I want attention. The blog post I made regarding the choice I had to make was me reaching out to MY friends and family. At that point in time, my head was spinning, my heart was sick, and I had no idea which way to go. I was yelling at MY loved ones to help me. Help me with your input on what you would do, what you think, what you feel..anything. I had no clue that my loved ones would share Buggies blog and it would get 1,400 page views in less than 24 hours. That BLEW my mind. I had no clue that your friends and family would extend their love to my little ( alright, not so little) family. No clue that so many people that I did not know would make such an impact on me. I feel very Blessed. With all of the new people learning about Kira, I am glad that my girl can teach people some compassion that perhaps they may have been lacking. It can educate people that did not know about such a severe disability. Although undiagnosed, Kira goes though a lot of what other disabled children do, and then she goes through things that are so unique to her. Hopefully it can also help people see the world as a bit more precious and fragile and learn to enjoy it more, love more, live more and don't sweat the small stuff. All of my love! Sarah XO

Decision

Where do I start? I woke up this morning with a solid decision. Completely at peace with it. Along with feeling like I know what's right for right now, I passed the computer screen before we headed out and I saw that sign. It had been confirmed. I was not going to stop. Not yet, and let me tell you why. If the worst is behind us and it would be smooth sailing from here on out, I would never know. Her lung would continue to be squished and that would be a terrible feeling...to feel like you are having a hard time getting air in. Also, because of the severe curve, her ribcage is protruding, and although I change her position often, that body part poking out gets irritated quickly and she can get bed sores there. So with all of my Praying and weighing, I realized that having a procedure every 6 months and taking pain meds for a couple days was better than living the rest of her life with the previously mentioned issues. My "sign" of confirmation was from Jim's cousin, on my FB page. And it was quite literally a sign. It was an image that mentions how the miracle happens right when you are ready to give up, and it says not to quit. That was awesome. 

Things weren't that simple however. When I changed her wound vacation bandage on Wednesday night, I knew it looked bad. I even told Jim that it looks like there is something in her wound that I could grab with tweezers. I took pictures and put a new dressing on. After surgery today, I spoke to her surgeon, and he tells me that the rod had completely gone through the skin. I go back to my phone and look at the pictures and sure enough, as clear as day, right there popping out of her open wound is a black and titanium rod. HOW DID I NOT REALIZE THAT IS WHAT I WAS LOOKING AT?!! Its so obvious in the pictures. This blows my mind. So looking back, this is exactly what was happening a month ago with that rod in the other area. It would have broken through the skin as well had her surgeon not been on the ball and got her right in. Her surgeon is awesome, but for whatever reason, the VEPTR is not compatible with my girls body. It breaks my heart through and through to even imagine what that felt like. She was acting out in pain that whole weekend, but I could not figure out what was hurting her until her wound opened, and even then, just thought it was a blister that popped, definitely not her metal rod pushing through her sweet baby skin, ugh! That's just heart sickening. Needless to say, those rods will never go back into her. But I know I have other options. I will find those out and make the best choice for her. For now, she is packed with an antibiotic filled cement spacer and beads. Thank you all so very much for all of the love and Prayers that have been flowing into our family. It humbles me to see outpouring from people across the States. People I do not know are reaching out to me in love and Prayer, and it has most definitely restored my Faith in humanity. I will respond to each of you  when we are home and settled. But again, thank you. 

 

Voice your opinion

I am about to get real personal here. I know this decision is for Jim and I to make. It's ours alone, we have to bear it. But I have 24 hours to make a life and death decision for my daughter, so along with heavy Praying, I am reaching out to YOU. I will read all comments, and do with them what I need to do. So please respond, even if that means emailing me privately. ( FiveStarsForSarah@live.com).

Kira is going back into surgery tomorrow morning to have both of her titanium rods removed, due to an infection in her back from the last surgery ( 1 month ago.) This makes 3 surgeries in 3.5 months. Jim does not want to put the rods back in. He says we made the wrong choice, and we put her through all of this pain for our own selfish reason, which was to keep her longer. I agree with him. We did do it to keep her longer. Without the surgery, her spine would have continued to squish her lung, which would eventually take her life. It would not be "painful" for her to pass like that. Her oxygen levels would slowly be less and less until her body just cannot get enough oxygen to keep her stabilized and she would become hypoxic and go to "sleep". The surgeries however are painful. I knew this is what I had to put on my imaginary scale before the initial surgery, and see which one I am going to go with. Do the surgeries, cause her pain during recovery periods and keep her longer, or do not do them, and let "nature" take it's course and lose my girl earlier than I want. I NEVER want. What I want is for her to be comfy and feel all of her lovins until she is an old disabled lady.

If we choose to stop, stop all of the surgeries, not put the rods back in, and just close her back up for good, I need to know before we go in tomorrow morning. If we stop, then the antibiotic cement will not go inside of her. He will just take everything out, and suture her up.

If we choose to continue, then he will put the cement in her and she will go back in 3 months to have the "big" surgery all over again.

My very dear friend Shannon is Praying hard for me to get a sign. I believe. I need that sign, because time is a'tickin and i'm lost.

Like a faucet

Her wounds are draining like a son of a gun. This is a great thing. As long as the infection is coming OUT, it is less of a chance to turn inward and go into her bloodstream (septic). She seems pretty comfortable with the help of Lortab... that is such a great med! Within less than 24 hours, her new bandage was almost already completely saturated. The wound vac is doing it's job. Jim just flew back to Blythe Monday morning, and he is flying in again this evening. Silver lining if there is one to Sissy going through all of this crap is I, as well as the kids, get to see the Papa more than twice a month!

Veptr Updates

Kira's initial surgery was June 25th. As mentioned below, she did well once we got her pain under control. Everything was fine until the middle to the end of August. We were certain that one of the rods had come off of the pelvic bone. You were really able to see it and feel it poking out. The X-ray showed what looked to have confirmed it. Surgery was scheduled for that revision and to have the first lengthening. That surgery took place on Sept. 5th. She did so well! Turns out that the rod was still attached to her bone, but it had curved outward as her body was shifting. Her pain level did not appear as severe as the initial surgery whatsoever. It was manageable, and she came home after only a 3 day stay. It was great! I wiped my brow with relief and thanked Staples for that easy button. This past Wednesday, I go to check on Kira, and see what appears to be a jar of baby food, sweet potatoes to be exact, all over her and her bed. It was coming from her back incision. Infection. Upon inspection, I see that ALL of that came out of such a small hole. I took her to see the Surgeon, and while laying there, I see a second hole has appeared. He put a wound vac dressing over it and placed her on an antibiotic. Over the weekend, it had continued to drain a LOT. I took the wound vac off so I can change it out, and I see that those 2 tiny drain spots have started to open and are now pussing. It is looking terrible. She has to go back into surgery to have both rods removed on Friday. The plan is to remove both rods but to leave the hooks on her, and to place an antibiotic filled cement spacer inside for 3 months, until the infection is fully gone, then re-insert the rods. My heart aches for her because I am so tired of her going through PAIN. I want Kira to have a comfortable, peaceful life, and this is not it. I was SO hesitant to have her scoli surgery. I denied it for many years. I did not want to put her through the pain and discomfort that was to follow a serious surgery such as this. It wasn't until it became a serious, organ-squishing ordeal that I realized if I wanted to keep her, I needed to put her through it. I was so glad that I did after the fact. It seemed to have worked so beautifully. Now with this, this will be the 3rd surgery in 3.5 months. *sigh* I am not sure if I should even put them back in when the infection is gone, do I continue to put her through this surgery crap? That, I need to think more on.. hubby and I are both sort of second guessing all of this, did we make the right decision in the first place. Please don't answer this, it's my worry, fear, frustration, sadness, etc. speaking. I knew infection was a possible side effect, but I honestly did not think it would happen. Everything is a possible side effect. Will keep you posted.

Bandages are off!

Warning! Graphic images below...

I took her bandages off this morning, and seeing my baby girls back kind of made my heart skip a beat. It looks pretty nasty and painful, but all in all, it was the RIGHT thing to do. You can really see her curve in these images, and you can even see the rod. I was trying to get a good image of the shorter rod, as you can really see it coming out of the skin, but my cell phone camera, would NOT capture an accurate image of it. If you know anyone contemplating the VEPTR surgery, please refer them to me or this blog...it looks bad, but it's such a good thing! I took an image of her laying either side for comparison sake. Actually, now that I posted the pictures, you CAN see the rod in the first image. That line poking out is not her spine, her spine is curved on her left side... that is the titanium rod you see.

She's home!

Baby Love is home and cozay! Well, when this seizure that she is having as I typed that, ends, she will be again. It all happened so wonderfully fast. her Orthopedic Surgeon came in and we were talking. I asked him when he thinks she can go home, and he said that he is very happy with how fast she has bounced back, and that the discharge date would be when I am comfortable taking her. Well... you could see the smoke behind me as I started scurrying to get out of there! Don't get me wrong, I love and appreciate beyond words, the care and love she gets from our Kaiser family, but home home... YAY!! It's all just a matter of pain and seizure control, and with the appropriate meds to handle that... I can get r' done! As they were writing up her discharge papers, I shot across the street to Wally World and bought her a 3 inch memory foam mattress, body pillow with a pink velour pillowcase, and fleece absorbent bed pads. I hope Kira Jean feels the comfort! I will be so glad when I no longer feel like she is glass, and she can go back to being my sack of potatoes. I say that with as much love as a human being can love potatoes. How about a sack of SWEET potatoes? Ahhh, it just feels great to be home and having this behind us. Thank you all again for your love. XO

T & A

Yes, that "T & A". I can't make up my mind if I should upload a quick clip I have of her the day of surgery when the Nurses rolled her on her side. It would give you guys a view of her back, but it shows Ladybug's boobies and booty. You know, she is an old lady now, about to be 8.... are 8 year old girls modest? I know 3 year old girls would run the streets streaking if they could, as well as some 3-0 year olds.. but where do 8 year old ladies fall in there?

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!