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.

Don't be so rash!

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..

Influenza A

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

Dec. 2017 & Jan. 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.