Saturday, March 24, 2018
Deep breath. So, this is not a comfortable post for me to make, because I know the judgment I will undoubtedly endure. Unfortunately, our society has a long way to come in the recognition of medical marijuana. But hopefully someone reading this, who does not believe in the therapeutic properties, and thinks it should be banned, will have a change of heart by the time you finish reading about my girl. If you have not read "Kira's Story", I encourage you to do so. It was written many years ago, but it truly does not require updating, as there have been virtually no changes. We have tried almost every single anti-convulsant that can be prescribed, we have also put Kira on the Ketogenic diet. Nothing helps her seizures. They are absolutely untamable. That's not to say she is jerking and thrashing every minute, but it's also not that far off. She has to have her Klonopin, Baclofen, Trileptal, and Ativan on board to be in a comfortable state. If it weren't crappy enough that her brain wants to spark all day, every day, throw in 4 failed back surgeries to help her 119 degree scoliosis curve, and her dislocated left hip. Kira's body hurts. Kira's brain is not her friend. But, she has THE sweetest soul oozing through that you can't help but feel and are magnetized to when in her presence, and it is my job to help my baby, ANY way that I can. She is here for a purpose, and obviously there are no words that can describe what I feel having to watch my daughter go through this life in this way. I have seen magical turn arounds from other children who were severe like Kira, through the use of CBD oils. I'm sure you have heard of Charlottes Web or Jaydens Juice? I was hesitant to try it, out of fear of Kira somehow being taken away from me. I made sure that I went through the proper avenues of becoming her certified caregiver of CBD, and getting her a CBD patient certification from a licensed Dr. I think it SUCKS that a Parent holds off HELPING their child out of the fear and stigma that our society has created. Let me tell you how amazing this oil is for my girl. VERY. It literally works better than all of her heavy duty prescriptions combined. That's not knocking the world of modern medicine, this is me saying for Kira personally, CBD works better. It has not woken her up and made her a responsive tween, who can giggle at your jokes, as my brain unrealistically dreamed of when envisioning her using CBD, but it brings her amazing quality of life. That's priceless. If all I can do for her as her Momma is make her comfortable, take her pain away, calm her brain so it's not continuously firing, and give her as much love as I can squeeze out from my toenails to my hair follicles, then, that's what I'm going to continue doing, and I Pray that our family gets nothing but support for it. I also Pray that we can be testimony to other families who are unable to manage their loved ones medical issues, and have been considering trying CBD oil. I am not anywhere where I want to be with the use of her CBD's. I have only been giving it to her about once a day, very recently, twice a day as she is still on her full host of prescriptions. I would like to start the weaning process of her presciptions, and eventually only be on CBD oil if that can happen. When I give Kira a dose of CBD, it is a tiny amount that I mix in with coconut oil and water, and put through her G-tube. It kicks in pretty quickly, and brings her great relief. She will then be relaxed, no posturing, no little lightening bolt jerks that she sometimes gets that will throw her into her seizures, nothing. Nothing but a precious girl who is not feeling pain or seizing for those few hours that the oil is on board. It is in those hours that I try to get the most stimuli in, because on a normal basis, any type of positive stimuli sparks more seizures. It's stupid! The only way for a brain to grow and create new connections are through positive stimulation, and all of her life, that just creates more seizures. I cannot tell you how frustrating that is. It's like.. "Don't rock the boat!" I'm not afraid of that boat rocking anymore. Not when she has had her oils. It truly has been life altering for her, and me really, and it can only get better from here, when we get on a more structured schedule. Kira has Angels in human form, she has a LOT really, but right now, I'm talking about the people at OC Pharm. They heard our story through my sweet cousin, and almost immediately decided to sponsor her. They have been Blessing her with free CBD for the last year, asking nothing in return. They recently redid their website, and they have added a "Kira" tab. It's crazy to see my girl on there, where they are sharing her story, linking her blog and they even created a Gofundme for our family. It's like, "Are you kidding me? This is too good to be true!" But it is true, they want to help our family, and I Pray that they are Blessed in return. I am not sure how I feel about the Gofundme, I will be completely honest. It almost makes me feel moochy, as I would like to donate to others, not have people donate to us. Please, by reading this, do NOT feel any sense of obligation whatsoever to even click the GFM link, please. I just think it is beyond amazing that this company did that for her, for us. Maybe we can start calling her oils something like Kira's Koncotion or Kira's Kourage.. like Jayden or Charlotte have, I don't know!:) I just feel so grateful to https://ocpharmstore.com/pages/kirafund, and beyond joyful that I have something that helps Kira Jean. Feel free to message me with any questions, I am pretty much an open book about what she goes through. I sincerely hope that by me getting uncomfortable and being brave to open up publicly about this, can help another Momma find this sort of "AHA!" treatment. Until more and more families share their testimonies, awareness cannot happen.
Thursday, February 1, 2018
Interesting day. Beauty queen was extra colorful today. When she is worked up and uncomfortable, she will get pretty blotchy, but this was not that. This appeared while she was cozy and calm, and there was nothing touching her skin in these areas, so it's yet another little piece of the Kira puzzle. She is on a bunch of different meds, so it can be any one of them, or the virus, or none of those things at all. Parts of the rash went away, while new patches developed. It traveled to her arm, chest, tummy and thigh. ( Right side only, which is super odd). After a while, almost all of it was gone. Her airways are much more open today.. that terbutaline is a great drug! She came down from 25 liters of high flow oxygen to 18 liters. Seizures are doing their normal rebellious thing. They just do NOT want to be tamed when she is sick. As I told an RN tonight, I'm not sure why God made seizures or mosquitoes...those are two things we could reallllllly do without! So.. I spoke too soon, we have to turn her 02 flow back up, she's dropping her oxygen sats a bit. Darn you influenza! Here are a couple pics of my blushing beauty..
Tuesday, January 30, 2018
A.K.A. "the flu". Two words that made my heart drop when the Dr. came into our room, and spoke them. I believe for me, this diagnosis freaked me out for two very good (to me) reasons... 1)We have never had the flu in our home. Seriously. 2)I've recently been seeing such sad, sad stories on Facebook about healthy people passing from this respiratory flu going around. She was started straight away on Tamiflu, so that's great! She's doing pretty good, I must say. Don't get me wrong, she's pretty sick, but she's not horrible. I ended up calling for a medic transport for her on Sunday, a few hours after my post.. something I have not done in 11 years. There was just something that made me not feel comfortable driving her in myself. As I mentioned on the previous post, she had a fever, and I gave her meds, which brought her temp back to normal. Not too long after, I noticed her fingertips were purple. Not a light grayish, kind of purple.. they were, "Your turning violet Violet!" Just her fingertips and nail beds, as well as her toes. They were also cold to the touch. Her lips were pink though, and her oxygen wasn't terrible, so I was confused. The thermometer was reading 95 degrees under both arms.. (I questioned the authenticity of this, but was told it very well could have been a true reading) She was also shivering, regardless of having 3 heavy blankets on her. To add insult, she was in a deep hibernating type of state. I know, I know.. she is the epitome of being in hibernation, but folks.. my girl was OUT COLD. But like I said.. her vitals weren't scary. I didn't understand what she was doing. Now, it makes sense. Her body was doing what's called "shunting". It was gearing up for a high fever. It pulls all energy from your extremities, so it can focus all of it's attention on the core. Her core got the heat.. the fighting mechanism! Her "out like a light" state is how her body is reacting to the flu. The Dr. gave me an example that made sense... when your other children get sick, they turn in to washcloths on the couch, just exhausted.. that's how she's feeling. This is our 3rd day back in (same room as 2 weeks ago! Our friends saved it for us!) and she is alternating between SUPER relaxed, to seizing back to back. Not too much of a middle ground right now. She was started on Terbutaline, which is a bronchodilator like Albuterol, that goes into your IV, today for her wheezing and to help open her up. It works really well for her! Today, she and I had fun with Snapchat filters! Fine, Momma had fun with Snapchat filters and subjected Kira to humiliating things like Mario mustaches and werewolf faces, and just cuddled most of the day. This woman is patting herself on the back, and I think you will join in after you hear this shocking news. OBVIOUSLY, I was craving Panda, so I decided to just do it, and hopped in my car to go get me a "Pandy dinner!". I parked in front, walked in, walked up to the counter.. then turned around and walked out. I walked in to Panda's neighbor, "Erik's Deli" and grabbed myself HALF a sandwich and HALF of a house salad. WHAT? WHO am I? And since WHEN did I eat half of anything? If you're about to tell me to indulge right now, trust me, I do. Last night for dinner, I had a possibly literal 5 pound container of ice cream, with ALL of the sundae toppings to boot. It's okay though.. MY "New Year" hasn't technically started yet. I get a do-over starting next month! So my "back on track" goals will get my attention when I decide it's New Year's eve! Kira and I are so very grateful for all of the friends, family and amazing support system that we have in our lives. You make us feel very loved, thank you! <3
Sunday, January 28, 2018
Hello hello friends and family! I know I didn't update about her latest hospitalization, but quick rundown... She got sick on Dec. 20th, like, the moment Christmas break started...boo! She was sick, but was I was able to clear her, and keep her 02's up at home for a while. Then on the 29th, I took her in to the ED (ER). This time was different though, her 02;s weren't horrible, as they are when she has her normal pneumonias, and her x-ray and labs looked good, so the Dr. said, "Keep doing what you're doing at home, this is bronchitis." So I took her home, and continued her aggressive respiratory treatments, but she just didn't look good! She was working SO hard to breath, and sounded super course. Then on Jan. 2nd.. my girl kind of crashed on me. Her oxygen went into the 70's and she looked terrible.. I knew she HAD to be admitted at that point. She was. What's crazy though, is that although she had been sick for quite a while, she got worse while in, and she developed a 9 day fever and untamable seizures. We all agreed this was a secondary illness, meaning she picked something else up right after coming in. It was a bumpy ride, as it always is when she is inpatient, but by the grace of God, she improved and home we went on Jan 12th. Fast forward to now (2 weeks after coming home), and I am shocked that I have to announce that I might actually have to take her back in! This is the 3rd illness hitting her in one month?!! She doesn't go anywhere, and it's only family and her home nurse that have been around her, and of course we all make sure we have clean hands around her. I don't get it. Last night, her secretions were THIIICK and sticky, and she had a fever of 102. This morning, her fever was 102 again, and she was working hard.. breathing fast, retracting, etc. I did a round of all of her therapy equipment, gave her meds, and worked my Momma magic the best I could. The meds kicked in, she is out cold, fever is gone..BUT, without oxygen, her 02 levels are 86% <---- NOT good. So, here I sit.. debating on what to do, releasing whatever needs to be released a bit by posting this, having coffee, and thinking I need to jump in the shower and pack a bag just in case.. At this point, I am pretty sure I am going to get fired from my job. I KNOOOOW Kira is numero uno, and family is first, regardless.. but Lord have mercy, I'm surprised my co-workers still know my name.
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
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 folks..it 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!