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.