PRESSSSSSURES

Happy humpday! I have been trying to break the girl free for three days now! I need the bird to fly the nest! The problem that is keeping her here is her blood pressure. She came into the hospital in septic shock over 2 weeks ago, and her pressures have not been the same since. The other day, she was 70-something over 40-something. She is hanging in the 80s over 50s for the most part, which COULD be fine, but her MAP is under 60, which is not fine. The Dr. said this morning, if she can keep her systolic in the high 90s for most of the day, we may be able to discharge this eve. Prayers up please, good vibes please, toes-fingers-and legs crossed please! :)

Too Many Weird Things

I do not understand what is happening with Sis this admission, and I don't even know where to start, in telling you guys everything that is and has been going on. As far as her respiratory infection, that is darn near gone, thank God! She is only requiring 1L of oxygen, that's nothing! :) HOWEVER- her electrolytes, blood pressure, cardiac function, GI system.... It's just been so crazy, and I welcome any anecdotal stories or suggestions. As far as her bloodwork, her potassium & magnesium keep dropping. They will give her supplementation and it pops them up, but they drop again. She continues to have A-fib arrythmia randomly throughout the day. She keeps having moments in the day where her blood pressure is dangerously low- with a MAP of 56-58, and her heartrate wants to hang in the 40s, but will literally bounce up to 70, and back to 40 with no movement from her. Currently, her oxygen saturation looks beautiful on the monitor, but her face and lips are very pale, cold, and she is "OUT" if you will. They gave her a bag of albumin, but it did not raise her BP, the nurse did a sternal rub to see if she would respond to pain, and she did. Her blood sugar was normal.I am at a loss right now with why all of these weird things keep happening, and how do we get her back to her stable baseline if the pneumonia is basically gone?

*KNOCK KNOCK* Is anyone still out there? It has been maaaaaaaany moons since we last spoke. I missed you all! :) In Keeping up with my tradition, I am only posting when Kira girl is in the hospital. Sorry to turn this blog into basically a "Dear diary" of sorts for Kira's illnesses. I realized that I never even updated with what happened when she went in for her port replacememnt surgery. Long story short, it was the scariest admission she has eve had. She was in for 5 weeks and coded for the first time. If you go back to Sissy's origins, you will see that I always knew her life would be short, but time after time, this fighter keeps showing me what a warrior she truly is, and God keeps letting me know He is right there. That admission though...10 minutes of respiratory arrest, how could I not think that was "it"? Miraculously, it wasn't. <3 This beautiful human has had an amazing almost 3 years of good health. As much as we love our friends at Kaiser, We love our home more! But, in true Kira Jean Beauty Queen fashion, she was in the throws of a serious illness before I barely knew what happened. We have been in the hospital now for 5 days, and we are experiencing SO many firsts. Who knew that after 19 years, there were still "firsts" to be had. Kira has pneumonia (surprise!) with 2 different bacteria in her precious lungs. She only presented with signs of a possible illness on Friday, and when I brought her in on Sunday, she was septic and went into septic shock. Less than 24 hours after arriving to the emergency department, she developed C-diff, and a GI ileus. So she has an infection with bacteria in her lungs, and an infection with bacteria in her intestines. The tricky thing here is that the infection in her intestines is caused by the antibiotics treating her lungs, and the antibiotics to treat the intestinal infection battles against the antibiotics for the lungs. Tricky, tricky, tricky. Something that I am not a fan of, and don't come for me, is that she was admitted to the adult side of the hospital since she is now over 18, instead of the peds and PICU floor that we have known all of her life. Let me tell you.... culture shock. The rooms here do not have any cute, colorful, or uplifting decor- instead, they are crammed tightly with walkers folded against the wall and a commode (toilet) sitting politely next to my chair-bed. One may say, "Who cares what the room LOOKS & FEELS like, it's about the care given." I would tell that person that they are absolutely correct, and remember when I started this topic saying, "I am not a fan"... We miss PICU and there needs to be a way for her to be treated over there, by a team who KNOWS her extrememly unique and fragile ways (also, who have known her most of her life and genuinely have love for her, so her care is top notch.) Nothing like getting a crash course in the same things you are learning about in class...

That Wonky Port!

Kira Jean had a venogram/angiogram performed this morning, to see what is going on with her veins and her port. This port has outlasted many a ports I am told. She has had it in for 10 years, and though it has migrated to the fatty part of her armpit, due to her severe scoliosis, it was still working. Up until our last port flush. Once a month, we go in to have a saline flush and then Heparin pushed in, where it sits, trying to block any clots from forming. With Covid being out of control in our city, I have been scared to death to take her in, to have it flushed. I kept pushing it back, so I did not risk Kira picking Covid up at the hospital. I just know that if she got it, this would be the fight of ALL fights for her! So, what I ended up doing is possibly creating an issue with her port, making us have to go in to the hospital WAY more than her in & out flush. UGH! It "may" not have been me though. The line will flush, meaning you can PUSH things in, but you cannot pull back on it. This is definitely neccessary, as my child has like zero veins to get blood from, and so this port is our only hope when she needs labs. The first step was an x-ray to see if there is a kink, possibly caused by all of the internal shifting & dancing it's doing. I peeked at the image, and it did not look kinked. Which led us to today, the venogram. Afterwards, the Dr. told me that he does not see a DVT (blood clot) like she has had in the past, but the issue lies at the tip of the catheter. He said there are no clots in her superior vena cava or elswhere that was imaged, which is a great relief.. but something WILL need to be done with this issue. He wasn't sure if the tip of the catheter is pressing against a wall, so when they try to pull back, it collapses, or there may be a piece of fibrin sheath covering the tip. So now we wait. He will forward the results to her specialists and I will get notification on the next step. I would HATE to put her under, but if it needs to happen, I am hoping the entire line can be moved back onto her chest, where it SHOULD be and once was. It would mean much less pain for her and way fewer pokes, trying to get into that angled, wonky, ancient port! But oh what a GIFT this port has been! Now I feel bad for calling it names, it has been SO good to her and hung on when others would have given up years before! SO with that, I thank you sweet port! You aren't ancient, it just may be time for you to finally call it a day. Job well done.

7th grade!

Shoot, maybe 8th actually. Judge not, that you be not judged. MAT. 7:1 So, I didn't actually know that LEGALLY, Kira had to be enrolled in school. Obviously, she is too severe to attend a school, but I have heard of this "Home Hospital Instruction" before. Kira receives regional services through Alta Regional, and each year at her IPP (Individualized Program Plan), it was brought up that she *could* do a home hospital type setting as school. I always took that as a *suggestion* (lol), but since I work with her, and she has a home nurse as well, I was like, "we're good!". It wasn't until I started working at a school, and I learned that I could get into legal trouble if she was not enrolled, that I understood more. It was a grueling process full of a lot of ball dropping on both ends (mine and the school district), BUT... drum roll..... she is now officially an enrolled student! They say 7th grade due to her age, but I think my friends' boys who were born in the same month as sis, are in 8th grade. What this entails is having a special ED Teacher come to our home once a week ( more/less hours/days are do-able), for one hour. She will have any type of positive stimuli that they can offer her and that she can tolerate without flying into crazy back to back seizure mode. Now, really knowing what this is and how wonderful it CAN be for her, I am kicking myself for not doing it from jump. But isn't that the way, we parents have a LOT of regrets, and no disrespect to non special needs kiddos parents, but I fully believe that we have the possibility to have SO many more, and boy, do I. However... here we are, she is enrolled, she will get extra lovins once a week, and I'm thrilled! QUESTION, you know how a lot of schools do 8th grade graduation.. would that be cheating if I let Sis attend graduation? HAHA I mean, really, she would have only been in school for a year. But, um, heck yes, she will be there.. cap, gown, balloons, mom blowing the tootin horn, etc. Pulling out ALLLLLLLL the stops!

Got sugar?

Apparently, Kira doesn't. Well, not as much as she should anyhow. Today is Wednesday. On Monday at 4 p.m., we went for her normal, monthly port flush. It's just a saline flush and a heparin lock to keep her port-a-cath line in her chest clear. Every now and again, we may do some labs if needed. At the appointment, the nurse asked me if I needed any labs? I said "nope". Then right beforehand, I changed my mind, because her urine has been smelling slightly off to me, so I said, "You know what, let's go ahead and get some." The next morning I get a call at 6:30 A.M. from a nurse telling me that I need to get Kira into the ER right now, and if I can't that I need to call 911. They said to get some sugar into her right now because her blood sugar is at a critical level of 30. My head was spinning.. we live in a LOT of different worlds, but blood sugar world is not one of them. I'm completely ignorant to it. I did what I was told while panicking of course. I put 3 heaping tablespoons of straight table sugar and water into her and off we went. When we arrived, her sugars were 151. The nurses at the desk told me they did not believe that the 30 was accurate. They said it was just too low, and she is now 151. I felt better. Then we go back and see the E.R. Dr. who also tells me it almost positively was NOT 30. He said, "30 is truly not conducive to life." So obviously at that point, I'm pretty convinced it was a lab error. Until we draw again. Now she shot back down to 44. The 30 was actually very accurate, and she was sitting at that for hours..days...weeks..months? We have NEVER had an issue with her blood sugars. Many times over, this girl has fasted for 3 days upon some pretty sickly pneumonia admissions. The food is held off because intubation could be a possibility and being vented and fed don't work well together. And if going 3 days without food (only I.V. fluids) don't alter her blood sugars, what the heck is doing it now? Everyone is stumped. We haven't changed her food or meds. She isn't sick (that I know of)...it's a mystery! Her Dr. is amazing and being so thorough! She is doing so many lab work ups on her, bringing other Dr.'s in, and experimenting with some things. Apparently hormones can mess with sugars, so she is doing a full hormone panel. Oh my gosh.. what if this is Kira's PMS?! Ooooooooh girl!! Okay, Kira Jean, you tell your ovaries, if hypoglycemia is going to be your PMS, then cramps and mood swings are off the table! No deal. Seriously though, I am pretty anxious to get the panels back. What a very confusing world this one is. She will shoot up in numbers when fed, or given glucose, but quickly drop, and drop low. So, the current sitch is this; We have been giving her a continuous drip feed since last night, and as long as food is being pumped into her, her numbers have remained stable. We were checking every hour, now we are checking every 2 hours. On a side note, and your kid (maybe you) will thank me for this one, "STAY AWAY FROM THE BLUE LANCETS!!!" I'm surprised my ladybug's thumb is still attached after that! Stick with the lilac ones, for SURE. *cringe* Moving on... So we turned the feeding off at 5 P.M., it is now 6 P.M. and we will check her at 7. Let's see what happens 2 hours off of food. Then turn the drip feed back on. Starting tomorrow morning, we are going to attempt to give her her normal breakfast, lunch and dinner, BUT with some additional corn starch in between. Apparently corn starch is a complex carb and will help keep blood sugar levels pretty stable for a few hours. No clue what will happen with all of this. Perhaps God thought I needed some additional "hands-on" experience before going into actual nursing school? I love hands on God, but please let me lick her sweat to gage her sugars or something, no needles.

CBD

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.