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!). 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. We miss PICU! 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.

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.

Ahhhh

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?!"

Peak?

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.

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 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!

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

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.

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.

Rhinovirus

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: https://www.facebook.com/keepJahiMcmathonlifesupport/?fref=ts Israel's story: http://www.sacbee.com/news/local/health-and-medicine/article75472347.html

Life

Happy Monday all! Today, we had a new Nurse come to our home for orientation. We are so Blessed to receive respite care during the week, makes my crazy life a WHOLE lot easier! This Nurse will be an on-call Nurse for when one of Sissy's caregivers have to call in. It was a great meeting. She was here for two hours, going over Kira's history, what care she needs through the day, etc. She was a very nice woman. I loved her personality and I really love the fact that she has a special needs daughter herself, after having 3 healthy boys...go figure! Let me get to the point of this post.. she asked me something today that took me by surprise. This was the first time I have ever been asked this question. As we were discussing Kira's early days and how every.single.proffessional across the board "knew" this child would not see her 2nd birthday, she asked me what made me choose to place Kira's feeding tube. It was a very honest question, and I can appreciate that. My response was, "As opposed to what?" "Not placing it and letting her go? That's not an option." The fact that this question was presented to me today is mind blowing because literally this morning, as I was doing my normal early morning FB scanning, I came across an article about Terri Schiavo. Reading about Terri's tube getting taken out and it taking her 13 days to pass, and how she was the first of what is now at least hundreds of cases for people with disabilities to go this way was just taking my mind on a spin. I am not here to judge anyone, I know this is an extremely fragile and personal subject, but I personally could never do it. .... Has anyone ever watched "Futurama"? Terri was healthy, she had her own vibrancy, she was responsive. There was no impending doom for her that she needed to be saved from. It's insane to me that because someone cannot communicate the way we think they "should" or because they are not capable of taking care of themselves, that they are not worthy to live. So, some people need to have caregivers, isn't that kind of why we are all here anyway? To take care of each other? Some just need it more than others. How Blessed are those that take care of the needs of ones that cannot give them anything in return? I think very. I will be really transparent here, I have had my moments of helplessness where I wonder if she would be better off if HE would just call her home. It's a HORRIBLE place to be in, let me tell you. When whatever was going on with her, that made me feel that way ended and she was back to her norm. all I could do was praise him for keeping her with us. I KNOW this is where she belongs. I don't know how long she will be here, but she is not someone who should be starved to death and let go, because she is medically fragile and has a poor prognosis. She is a BLESSING, a GIFT, and It is an absolute HONOR to be Kira Jean Beauty Queen Prettiest Girl I've Ever Seen's Momma!

I'm so confused.

Good Sunday morning! For the past handful of years, I realize I only post when Kira is sick, but in all honesty, there really isn't much to report otherwise. Our days are very much repetitive. She doesn't do much lol. My sweet girl. Anyway, If you have been an avid reader of this blog over the years, or you know Sissy well, you know that she has this crazy thing that she does when she needs to as I call it, "nu-nu". Which simply means to have a bowel movement. She has always had chronic constipation, she just does not have the muscle strength nor the signals to move her own waste. I always need to give her milk of mag, Miralax, glycerin enemas, etc. She acts out in discomfort and often gets crunchy (congested) when she needs to go. She will get so crunchy and worked up at times that I have thought she suddenly developed full blown pneumonia. She will appear to have a lung infection, then she will poo, and viola..illness gone. It's really a trip! So now that you know that, here is the current situation... Starting Thursday night, she was a little congested, and this time her 02's were being affected. I KNEW she needed to go nu-nu, so I wasn't concerned. Friday, she is still uncomfortable, but still hasn't gone, so I gave her more milk of mag, and kept her on the o2. Saturday (yesterday) she went for me, But is still uncomfy. I gave her a bath just in case I need to take her in, and this is in fact an illness and not GI related. So here I sit, she is having her vest therapy right now, which shakes up her lungs, and helps to loosen up any thick and stuck mucus that is adhered to the lungs. She shakes for 20 minutes, then I will deep suction to induce a cough and see where we stand. Here is the confusing part... she is BARELY crunchy this morning. Her lungs sound pretty darn good! However, the nasal cannulas fell out after Jim turned her an hour ago, and her 02 saturation was 83. That is LOW. Her normal is 99-100. She oxygenates very well on her own. On 3 liters, she is 90-91. I don't understand why her o2 is so low, but she doesn't sound bad. I'm thinking she is going in. Her vest just stopped. Let's go investigate my lady..... So now, with the 3 liters of o2, she is between 94-96. Not too bad. Still, not at her norm. yet either. I still don't know if this is nu-nu related or if she is sick. That's ridiculous! Can you imagine if you appeared to have a chest cold when you needed to use the restroom? She isn't having labored breathing really, yet she is not completely relaxed. It's very hard to explain, and in all honesty, this Momma has no idea what to do at this moment. It is not an easy task getting her ready and getting her to the hospital, and I don't want to go through all of that with her just to find out she is not sick and they aren't too concerned. On the other hand of course, I don't want to keep her home when in fact she does have a nasty illness brewing and she goes downhill very quickly. Ugh, ugh, ugh! I just gave her her morning meds, she is in a comfy position, shaken, suctioned, and as chill as I'm going to get her right now. I will jump in the shower, and then I'll debate a couple more times on what to do, then I will most likely end up at Kaiser, then I will update this little blog here. Tootaloo.

Removal

Sipping coffee, trying to get in some relaxing time before I have to start hussling and bussling, I have about 30 more minutes.. *yawn*. Kira goes back in this morning to remove all of the hardware in her back. She has developed another gnarly infection. It is an MRSA infection running rampant in there. I do not understand why her body seems to reject any hardware put in and cannot stay infection free. Doesn't it understand I am trying to HELP it. Right now, she has that antibiotic filled cement rod ( placed a couple of months ago due to that bad infection), and a couple titanium hooks in her shoulder blade left from her titanium VEPTR rods. The plan is to remove everything, thoroughly wash out her back, stuff her with antibiotic beads that will eventually dissolve and close her up. She and I took a bath together last night, (should I be admitting that? She is 8 afterall. Forever my baby.) and I saw that 2 spots along her incision line are starting to open. The infection is trying to come out. I am so glad the way it worked out though. I took her to see her Surgeon on Monday because I noticed a large fluid filled area right next to her incision line. He aspirated it and yep, infection. But on the outside, no fevers. Ever since the beginning of these surgeries started, she has been in an almost every day state of discomfort or pain. Sitting in the carseat hurts her, but I would not have known she had a hefty infection if that hematoma did not develope. Ah, I guess I would have found out when her wound opened... anyway.. Daddy woke up sick today, so it's just Kira Girl and Momma heading out this morning. Poor timing. Grammies will be there soon too. Love to all!