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Monday, October 14, 2013

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.

Sunday, October 13, 2013

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

Friday, October 11, 2013

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. 
 

Thursday, October 10, 2013

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.

Wednesday, October 9, 2013

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!

Monday, October 7, 2013

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.