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!