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Wednesday, March 1, 2017


Almost 2 weeks in, and she is MUCH improved! Today is about the 3rd day that I have been able to say with certainty that she was doing better. Before that, it was hard to tell, honestly. She may have had moments were she seemed better, but would prove us wrong within the next hour. That is behind us though.. she is definitely almost over this! This morning, she was switched to the normal wall oxygen, and her numbers look great! She sounds so much better, has so much more air movement in her lungs, and is more comfortable. All around, fabulous. Her secretions are still thick, and she requires frequent, deep suctioning, and meds to help calm her, but this comes with the territory. I am pretty sure I have previously posted, but she was dealing with RSV, but also bacterial pneumonia with the 2 bacterias: pseudomonas and serratia. It is beyond me HOW this child got all of this! She doesn't go anywhere and she always has the same group of people around her. The thing that kind of has me a little like, hmmmm.. is that she is still having very low grade temps. Nothing scary at all, but I'm feeling like after day 11/12 of being on heavy antibiotics, she should have zero fevers, regardless of how low. Anyway, the title of this post: "Ahhhhhh", refers to a few things regarding today.. 1) Sister is mending beautifully 2)This means she will be homeward bound in the very near future 3) Someone had a volunteer bring me something else from Panera today. It was RIDICULOUS! I have never had Panera aside from the soup on Saturday ( Thanks to my mystery friend, AKA Lezlie!) and now this cheesy, flakey, buttery, bacony deliciousness.. seriously, so good! I'm guessing also Lezlie.. it had no name. 4)She had a a full on bath with her new girly bath goods that I grabbed this morning. (The hospital grade CHUX pads can hold 4 gals. of water, FYI). So, all in all, today is a pretty good day. I suspect we will probably be changing from PICU to the PEDS floor today or tomorrow, since she is now a new, healthier lady. Here are a few pics from today... "Bathing beauty" "Where did those bangs come from?" & "How ADORABLE is her new toothbrush?!"

Monday, February 20, 2017


This has GOT to be our peak day. She seemed like she was improving last night, but obviously someone coined the phrase, "The calm before the storm" for a reason. The nurse and I were so perplexed but thrilled to hear how good her lungs sounded last night, although she was still breathing fast and retracting, she sounded pretty darn CLEAR. JINX! After 1.5 hrs. of light sleep, I wake to the Dr. in her room and a nurse suctioning. She is CRAZY congested, and it's deep and SO, so thick. I know you all are Praying for her, and I appreciate that so much! Please continue, this has me pretty emotionally wrecked right now. Since this is my "Dear Diary" platform, I hope you all don't mind me being dramatic and all..but I think I may be ramping up to my peak day, right along side of her. My girl is just so darn fragile and this is miserable and painful for her, and that sucks! This Momma wishes she could take it all away, just like MY Momma reading this wishes she could take my sadness away too.. sorry Momma. I wish I could take your wanting to take my, wanting to take Kira's bad stuff away. We just need to stop. lol Alright my friends, It's possible I am becoming delirious.. time will tell. I think I am going to go hang Sissy upside down by her feet.

Sunday, February 19, 2017

Back in room 406

So sweet of our nursey friends to save Kira's room for us! ;) Last time we were here, she was dealing with her left lung collapsing on her a few times due to pneumonia, now she has RSV and pneumonia. This illness truly came out of left field. She went to bed slightly worked up, (but she does that sometimes) and woke up laboring to breathe, hot skin and low oxygen levels. Just BAM! So here we are again, hanging with out PICU peeps, trying to get over another hump. The scary part(s) for me is that her scoliosis has her spine squishing that darn lung, and it has made it pretty weak, and from day 1 of this, gunk was already in that left lung. She is on day 3, and Doc says that around day 5 is peak and the worst of it. So I am buckled in, and will "expect" (such a negative term here) for it to get even worse, but I will know that when that happens, it's only because she's peaking and will be over the hump and the worst of it in no time. The thing that gets me, is that she has been breathing so fast and hard for 3 solid days now.. it's exhausting to watch, so I can only imagine how pooped out and miserable my love is. Her little tummy and chest have not slowed with the retractions at all. it's nuts. Her nurse is currently drawing from her port to check her co2 levels. When you work like this, you sometimes don't blow off your carbon dioxide, allowing it to raise in your body and that's no bueno. The machine she has is super nifty though, it's called an i-STAT, it gives results in about 2 minutes, so i'm anxious to see what it is. Can I just give a personal shout out while we wait.. I have this crazy inner strength when it comes to my eating right now, that is literally always MIA when she is here. I am an emotional eater, and I find total comfort in food. My all time favorite joint, Panda Express, is right across the street, and I have not paid them a visit yet. Haven't said "Hola" to Dos Coyotes across the other way, nor have I been down to the cafeteria to have the double burger, fries, coke ( and sometimes cake..SHH!). I have been coaching some amazing rockstars recently and they have been staying so strong with their diet and exercise, and I think that has in turn, helped me in this situation. Kira is kind of scary right now, and I am sleep deprived, and I KNOW it's okay if I indulge a little, I get that. But for me to not already have to deal with food regret, feels so good. It's less stuff I will have to deal with after she is home, healthy and a happy girl again.. 'cuz we aaaaalllllll know that I will have enough on my plate (no pun intended) with the boys being home alone this whole time, and dealing with the aftermath of that, though I know they DO try! ;) This is not to say I will NOT have Panda.. let's be real here just hasn't happened yet, and that's shocking! Okay.. her co2 is 52, so it's slightly elevated, but not a lot of change from yesterday morning, which was 50. Those are elevated numbers, but not out of control. So we will just stay this current path and continue to do our best to combat these yucky symptoms and issues. Thank you for the Prayers and love from our family and friends. We love you too!

Friday, May 27, 2016

Home Sweet Home

We're home! Tell me why it feels like we have been gone for 2 months, when really, it was a little over 2 weeks. As soon as we got home, I spent a couple of hours cleaning all of her equipment in her room, moving equipment around, making it more accessible, so I don't have to deal with a tangled mess, and of course doing therapy, feeding and meds. This child has soooo much "stuff", that I HAVE to figure out how to display the big items and organize the small. My brain is still in hospital mode right now, and I want to write out a structured schedule of Kira's day, that will go on the wall. Believe it or not (and those who know me, won't!), but Spring fever has been building up inside of me during this admission. I have been itching to get home so I can clean and organize and sanitize my home. I SERIOUSLY hope that that feeling is still with me when I wake up. Pray for me! lol It's much easier to do housework when you WANT to! ;) This post feels more like a "Dear Diary" entry rather than updating you all on Ladybug! Kira Girl is doing well! I really think she is happy to be home, I feel it. She has a few changes to her routine.. like sleeping with the Bi-Pap and getting those 2 injections a day for that darn clot! (ugh!) Kira made a new friend as we were leaving today. Her name is Brianna and she is 16 years old. She is absolutely precious! She is in the room next door. She is nonverbal like Kirs, but she is awake. Her family seems amazing, and it's mind blowing the similar lives her Momma and I live. Both girls have the same Neurologist, both have had jacked up spinal surgery with the same horrible complications, from the same surgeon, that we both regret. (Please note: I am not saying the problems were the surgeon's fault. He is a great surgeon, and these problems are separate from his skill.) We both had 3 boys, then our special girl, then another boy. I look forward to chatting with her Momma again! I feel like there are things that I am forgetting to mention or update on.. if so, you know I'm a wide open book, so ask away! I hope everyone has a wonderful weekend! <3

Friday, May 20, 2016

Hello Again From Room 406

TGIF again! I have not posted an update about Sis for a week, because really, it's been rough. This child is keeping me on a roller coaster ride. That left lung kept plugging, then collapsing, then we would re-inflate and stabilize her and smile because now, "She looks much better!". Put that on repeat and this has been our week. I am happy to report that her respiratory illness is much improved now. She's still sick, but I am pretty sure those scary moments are behind us. Wanna hear something crazy? Sure you do! The other night, I was cuddling with her and noticed her sausage finger looked a bit fatter than normal. She has precious pudgy hands and feet still, yet, that left pointer finger just looked off to me. I brought it the Dr.'s attentions, and turns out she has a DVT (Deep Vein Thrombosis) For you Googlers, like myself, search: "UEDVT". Having the port in, runs a small risk of developing a blood clot. ...and it did. So we started the Heparin injections to break it up, and get THIS..I, the needle phobe, am going to have to give her Heparin injections twice a day for 3 months. *Breathe* Somehow, (I have more research to do) the clot messed with circulation and caused that finger to swell. Can I tell you what an absolute BLESSING in disguise this illness was. Had she not been hospitalized with it, I am pretty sure the blood clot would not have been found. If we were home and I noticed that her left hand looked puffier than her right, I probably would not have thought it was a huge enough deal to take her to the E.D. So, there is my sob story for the week. Here's something lighter (and pretty freaking awesome!) On my way back to the hospital today, right before I turned in, there was a vehicle in front of me that had a license plate that said "SEE JOY". I told that Town & Country, "I'm trying!" A few hours later, I see this clip of a woman that was simply awesome. Just a super funny & giddy chick that could not stop laughing as she was wearing her Star Wars mask, what is that guy's name.. Chewy. Oh my gosh, she literally had me laughing with her until my eyes filled up. Seriously.. look it up. She was pure medicine for me, and people kept commenting under it, using the word JOY. They were saying how joyful she was, and how contagious her laughter was. Yes God, I did in fact see that joy you threw my way, and I thank you.

Friday, May 13, 2016

Pneumonia Update

TGIF! She just had a bath, hair is braided and in a bun, piggies and hands massaged with lotion, and snuggling with Grandma's home made quilt and enjoying music..she's a cozy girl! Plus, the Ativan helped! : D What a difference a day makes! Her dramatic change (downhill) with her X-ray from Wednesday to Thursday brought me to tears. It was a very scary sight to see some air space on the upper left side on Wednesday's picture, then complete white out the very next day. When the lung has imaging done, you want to see black, that means air is moving, when you see white streaks, that's fluid and gunk. Her right side has a bunch of white streaks, which it should right now, because of the pneumonia, but her left side yesterday, was a solid white wall. That explains the crisis she was in yesterday morning. Now, today's change is just as dramatic (improvement!). There are some black spaces mixed in with the white on the left side... that means that lung is opening up and clearing things out. It's just so crazy how fast all of this is happening! How fast the illness hit, how hard it hit, now the overnight improvement. Thank you Jesus. She is still pretty sick... oxygen dependent, fevers, poor circulation which is causing slightly discolored-cold feet, and a funky heart rhythm (which is due to the illness i'm sure, so i'm not going to worry), but I am pretty confident we have turned the corner. When she is in with pneumonia, we are usually camped out here for a good couple of weeks, but I don't at all see this stay being prolonged. I Pray that i'm right. But if the positive change from yesterday is any indication of the direction this illness is heading, she should be stable again in no time. THANK YOU everyone for your love and Prayers for my precious, precious Princess Ladybug.

Thursday, May 12, 2016


A.K.A. the common cold, is BRUTAL this year. Brutal I say! Everyone around me, at work, and home have been hit, and hit hard with this sucker, with more than half of them, developing pneumonia. I honestly thought Kira was going to be uber lucky and stealthily slip by. Nope. Saturday, she started presenting with what could have been a cold or it could have been her working herself up due to GI discomfort or general discomfort. By Monday, I knew something viral was definitely brewing with her, yet she wasn't too terribly sick. I made her an appt. with her general Dr. where we did an X-ray, and viral swabs and went home. The X-ray at that point showed some lower left side atelectasis (partial collapses). By the next evening, she was much worse. I knew by the early hours of Wednesday that she was going to have to come in. So here we are, Thursday morning, in the PICU, and she is a sick, sick girl. I went home late last night because we got her stable, and she was given her nighttime meds, so I felt okay leaving to sleep. The nurses desk is literally right in front of her. I should have stayed, and I will tonight, because she had a very rough time. I was woken up by a call telling me that she isn't doing well, and they are in her room bagging her because her entire left side decided to shut down and she wasn't moving air and oxygen. They wanted to intubate her, but I was confident that I could hold that off if I could just get there. I told her not to intubate and that I'm coming. Not sure how I got ready and here so fast! But when I arrived, they had placed her on the bi-pap. Which is not too intrusive. Uncomfortable yes, but, it's not the vent! The goal is to have enough improvement to downgrade to a machine that I love called the Vapotherm, which is simply high flow, warmed and humidified oxygen. I am so glad that we had the swabs on Monday, because as we were being admitted to the ICU, the results of those swabs came in, giving the start of this illness it's name. On another note, on Friday I believe, I saw a clip online about a sweet 2 year old little boy who is here in this PICU. I showed our home Nurse the article and told her that he is at "our hospital". This baby boy is on life support, and has been declared brain dead, but the family is fighting it, saying he is still alive and they are trying to raise enough money to transfer him to another State that will allow him to remain on the vent. It's such a heartbreaking situation. It is very similar to Jahi's story that I have followed for the past couple of years. Jahi won the fight and is at home with her Mother, appearing a little similar to Kira, in a Sleeping Beauty state. They did another interview last night with this little ones family, here, but I have not seen it yet. He is literally right next door to us. I want to go love on the Momma, such a difficult situation. Jahi's page: Israel's story: