It's a clusterful update

The wheels of something or other run really slow, a watched pot never boils, the definition of crazy has something to do with repeating the same thing and expecting different results, blah, blah, blah. I should change the subject and maybe switch to decaf. Besides the fact that I don’t run unless being chased or there’s a spider in the room; lately I feel like one of those hamsters (or are those rats??) in the wheels that go and go and go, but never end up anywhere except where the little shit started. But then people say to be the squeaky wheel. That didn’t really work out for any of my hamsters. WTF am I talking about? I don’t know if I believe in jinxing things. If I do believe in jinxing things, I’ve been an accidental jinxer forever and I’m really hoping that turns around soon. In all the chain letters I’ve received since 1992- with promises of 12 dishtowels and friendship bread starter that never dies; I’ve never once sent dishtowels, or recipes, or pot holders; and my friendship bread starter did in fact die without ever becoming glossy braided bread, or even bread at all. I’m responsible for all those broken chain letters. Good intentions, but no follow through. Why does any of this matter? I’m constantly trying to make sense out of nonsense. Maybe I should start handing out pot holders.

Kai: "I feel like I just witnessed a national tragedy and I can't escape it. But no one knows how scary this is except right in here. And we can't fix it. And that sucks."

I took this picture right before Kaitlyn had a seizure. I had no idea she was about to have a seizure in that moment. We literally went from smelling roses and giggling to her dropping the vase, her seizing, me dropping my phone to catch her, Kai running to find the phone & set the timer;  chaos just taking over our beautiful morning. That seizure was actually a few months ago. She has had more since, some bigger, some shorter, some less intense. No seizure is a welcome event; yet no seizure ever asks first before taking over our sweet girl. After that seizure, I wrote the following (paragraph below)- I felt better writing it out I guess. I don't write all of them down anymore. I used to track her seizures on forms I made, log them in the computer; trying to track patterns so we could prevent them better. All that effort, energy, time; it didn't prevent anything except living our day in spite of it all. While there is nothing wrong with tracking each one at all, it got to the point where I felt that even the logging of it all made things too predominantly seizure-mode and that's not helping any of us. That balance I can't find but keep working towards- where I'm not quite in denial because we do face the toughness in our day, but we also live each day to its fullest.

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Kaitlyn was sitting on the couch, with her headphones on to listen to her music before baseball started. Kai had just finished cleaning his room and was going to take the garbage cans out to the street.  And then everything normal stopped and chaos took over. That seizure sound- all described and heard before- never gets less shocking. The way the couch was reclined and her headphone cord was wrapping around her wrist and across her neck was making reacting in memorized steps a little more challenging.  Initially, I didn’t notice the convulsing itself. Her arms reach up and her breathing changes to make that sound.  Her whole body was also stiff at first, and then started going into convulsions.  She became this super power in a different form than we’re used to- all moving muscles with no ability to control them. I got the headphone cord off her, which felt like too long, and then tried to reposition her. But repositioning a 13 year old in a big seizure is no small thing. Somehow we got that figured out and her coloring around her mouth went from pale to purple. As the convulsions changed, her breathing sounds got louder, slower, deeper, and gargled sounding.  As soon as it seemed like it would stop, she’d start again. There should be a big long fucked up word for all that. I have her emergency meds in a little bag on the table so grabbed the versed bottle-flipped the cap off that, opened the med syringe- measured the med out- put it in between her gums and her cheek.  Still convulsing. I repositioned her again into the recovery position but her lack of any muscle control all while using all her muscles made that really tricky. Started the timer on my phone and then took some video of it in case that helps her doctors. Those moments, I’m out of anything to do to help. How literally 2-5 minutes can feel like hours is hard to describe. I told Kai it was ok which felt like a big fat lie. He had started to take the cans out and came in to ask me something, walking into all the above. He started counting- it helps him know that it’s less seconds than it seems to count them out loud. The med started to work, convulsions stopped, her breathing sounds changed (for the better) and her face looked more relaxed. Her color slowly but very surely improved. And then she started all over again. At least the second round started in a better position and was a lot shorter in time. Right when I was going to call for help, she stopped. She took a bit to breathe as well as I like, but she really, overall recovered incredibly well. I checked her blood sugar (which was fine) since she was on TPN, checked her all over for any obvious bumps from the seizure, snuggled her up, listened to her breathe, and cleaned up.

The aftermath is a wide-eyed Kai full of questions and observations, a room of misplaced things I moved or threw to get them out of her way, med supplies strewn about, and then my own adrenaline.  I can clean up the stuff but our hearts stay affected.
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Those moments take up all this room here; physically, emotionally, all of it. There is nothing routine about a seizure or emergency in your own kid. The things that are semi-routine are the tasks I know how to do in a seizure or some emergent things with her. Even those tasks, while I can do them, are done with shaky hands and that feeling that I want to cry stuck in my throat somewhere thankfully unreachable in those moments. I also reach out to others who know what to do- her doctor is stuck with my questions, and so are my small circle moms in a similar boat. And the support in the aftermath is huge. I think as the days, weeks, months and now years pass and we have a different circle than we started, it’s helpful- hopeful even; to remember that these scary moments don’t outweigh the good ones and we really aren’t alone. And it helps to scream here and there. Kai’s right, sometimes this sucks.

I want to advocate for Kaitlyn more productively and we're still trying to figure that out. Caring for Kaitlyn is complex, but also straightforward.  I appreciate some of the straightforward things in our lives. The cluster of tasks, meds, TPN, formula, line care protocols; they all come with tangible to-do’s. I know how to do them and am honored to care for her every day.  Of course I wish we weren’t doing any of this- I would do anything for Kaitlyn to not struggle or feel pain or endure another seizure; and at the same time, the tasks in her care to give her the best day possible help me to not fall over with the unfairness and sad in this. Care taking is all consuming but it is also a very tangible way to make it through a day when you can’t fix what’s going on with someone you love. Advocating is this confusing dance- I don’t always know who to keep calling, who to stop calling, what to say, or if anything I’m doing is working.

When I make calls advocating for Kaitlyn, it is rare anyone who answers the phone asks me why I’m calling anymore because they already know.  It's like Cheers, but different, and no one is drinking. When I first started writing letters about what was going on with home nursing care and our experience, I would receive calls and it felt both motivated on its own, and motivating to keep going. Now it sometimes feels frozen, and I'm not sure if that means it's slowly moving forward or if I should try harder. All of these experiences advocating for Kaitlyn combined make for the most inspiring yet standstill process to be in. Right before I dial any call asking for an update for things in limbo with Kaitlyn; I feel like I revert back to my awkward self from 8^th grade (sans the metabolism and thick hair) calling someone. I get all nervous- practice what I am going to say, and hope they don't decide I am unworthy and hang up on me. Seriously, just like 8th grade.  I hate starting a phone conversation now just as much as I did then, but I keep doing it. Explaining who I am, why I’m calling, why this is important, relevant, blah. The positive difference between me now and my awkward self in 8th grade; I don't give up like I did then. I think it’s good people know I’m still here, still asking for an accountable, safe, productive system that helps kids like Kaitlyn.  It’s also flattening that home care has this many holes still.

Kaitlyn isn’t the only medically complex child in our county who has no home care. Not always because it’s not covered by insurance (it is covered, although that is complex in itself); but because there is none available, or because what is available is unethically selective. One waiting list she’s been on for a year- there are many kids who need home nursing care on that list. This month marks a year since I started reporting what was going on with a lack of training, how unsafe it was, how I was being treated, how protocols weren’t being followed (or even addressed) by the agency. We are at a year since Kaitlyn lost any home nursing care when the owner of the agency wrote that letter to me. It has been a year since I made copies of that letter and sent them to legislators with letters of my own. A year since I told Public Dept of Health I didn’t need to be anonymous anymore.  I’m scared every day that if I stop advocating for answers, home nursing care, fairness, and moving forward, all this will be pointless. Some days I get caught up in thinking it’s a little insane we try and find productiveness in suffering and everything that’s shitty- but I whole heartedly think that’s a way to do more than survive a day. In a recent conversation that I was starting to think I was advocating the heck out of, I lost sight of finding the right words. Being exhausted found its way to take over. My mind drifted to ironing pants for some reason and I said out loud, “I’ll wear pants.” I probably ruined my credibility but at least it’s well ensured that I will in fact wear pants.

Like any other mom, I’d do anything for my kids. The trick seems to be in figuring out what the hell ‘anything’ means. Is it the right task, process, person to talk to, learning how to wait? If I could trade places with her, or take this away; of course I would. I just don’t know how. I strive to find a tangible way to do the ‘anything’ for both my kids.

It’s hard sometimes to see which direction we’re going because all I can see is right here. Right here, the air feels too heavy some days. I’ve noticed if I don’t get us outside, visit with friends, go on adventures; then emotionally all 3 of us are too droopy. Getting out means measuring and packing meds, formula, etc.  The backpacks for formula and TPN tangle up with the tubing that connects them to Kaitlyn and it feels like I’m constantly rearranging them around her arms, my arms, the stroller, people we walk past, and the car door sometimes. If I were better with metaphors, that would mean something.  Carrying Kaitlyn in and out of the car depending on the day, and paying attention to her schedule are constant reminders that there is a lot of effort in relaxing and attaining this ‘normalcy’ we’re shooting for. Sometimes I’d rather shoot vodka. I really need to stop making those jokes in public. In all seriousness, it’s always worth it when we find normal in this- our quality of life is better all around when we get out to the beach, hiking, having coffee with friends, etc. Changing the scene literally changes my perspective, and I’ve needed that even more lately. Kaitlyn says something dynamically sweet and poetically big picture and the day is okay again. Recently, we made it to the coast after parking the stroller in the sand- Kaitlyn was bright eyed, wide awake and in awe of the entire experience.

Kai played baseball for a different league this year. Really it was my fault, but it ended up being an incredible thing. I saw our league’s signups but I didn’t have the money. There’s a rule with getting financial assistance that you have to volunteer for a set amount of hours- which is a great rule, but I wasn’t sure how to do that with Kaitlyn. And instead of telling someone my dilemma, I stubbornly wanted to figure it out on my own. So I was trying to save up money. Between expenses, rent, keeping the lights on, groceries, gas, life; I didn’t save up enough on time. Every time we had an extra $5 we were out of milk or something. Then finally, I sent an email although it was past the deadline. I didn’t get a reply back.  Again, my fault. Kai has played since he was 5 and I messed up. I was the late one. Once I started admitting my parenting fail, every part of not getting Kai in baseball felt sinking.  Saying it out loud in conversations also helped though. We started brainstorming, I tried emailing again. Then my sister suggested the town north of us. They play little league, and our town is Cal-Ripken. So the benefit of that is that even though it’s not our town, Kai would still be able to play baseball because that’s his zone for Little League. Anyway, they embraced us quickly, even late. When they provide financial assistance, they call it a scholarship. It's still financial assistance, but it feels better. I am embarrassed constantly about our situation. I want to better provide for my kids and give them experiences I have not been able to. With the baseball ‘scholarship’, I cried at the positive way that was all communicated, done, and given.  No words of criticism or frustration at all. Kai was placed on a team quickly. The whole experience was so positive. He came so far so quickly and his confidence grew. I wish I had a picture of his face when he scanned the line of parents and found our faces when he made a play or was up to bat. His dimple showed, big smile, and then he’d be back in the game. That’s pretty illustrative of Kai- he’s so focused, but he always takes a minute to check in and smile too.

While I’ve failed at sending the letters out so far, Kai wrote out a thank you letter to Healdsburg Little League. 

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from Kai:

The best thing I like about baseball is playing it. I also like relaxing and watching the game with my mom and sister. It’s something we all do together. But I always cheer for whoever is playing the Giants. I like watching the Dodgers on YouTube because it’s really fun and it makes my mom and sister freak out. I’ve liked the Yankees since I was 2 or 3. Sometimes people say that doesn’t make sense but it does to me. Healdsburg Little League was really fun and I am very thankful I got to play this year. My team was really nice to me and the coaches all helped me and never made me feel bad if I didn’t know where to go. When I messed up I would learn what to do different.  I have favorite positions for baseball but any position can be really awesome. I got to try pitching this year. Wherever they say to go it’s fun.  When I’m playing baseball I get to focus on what I’m doing and not worry.  When my mom and sister came to my games, I felt like I had some spectators. Playing baseball makes me feel focused and when I’m playing catch, I have fun. Baseball is the only sport that I really know how to play. I like figuring out what pitches are coming when I’m batting. I like knowing the rules and talking about it to my mom.  At first I was super nervous I would get hit by pitches, but then I stopped worrying because when I did get hit by the ball actually it wasn’t so bad. My coaches this year were funny and Brad inspired me to play baseball more and play catch with my family more. We can’t play in the house unless it’s a nerf ball. I also really like baseball parties. We had 2. My mom worries about Kaitlyn but she tries to look like she’s not. And she worries about me. And she worries about other people, like my cousins. But in baseball, she smiles and is happy and doesn’t look worried. I think she was most happy I was on the Giants this year. And I saw her laughing with some moms. Giants fans.. I know, they can be hard sometimes.

Each time when I go with my team, I always think to myself a song I saw on the Dodgers YouTube; “it’s a good day for a home run or maybe a triple is ok, we’re gonna cheer” I never actually hit a home run but it was always still a good day. Thank you for the chance to play. Hey, that rhymes.

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This is kind of all over the place. I came here to update and then I wrote for 6 miles, shared Kai’s letter, and I don’t think I’ve updated anything. See...hamster wheel.  Kaitlyn’s still on TPN 20 hours a day, but formula is going better (for 18 hours a day). We spread her meds into smaller doses and she tolerates the volume better that way. That also means meds every 2 hours from 6am to 10pm, but it's helping her. If I'm being super honest, I do think her seizures are worse in that they’re almost all convulsive now and end in that scary after-seizure breathing.  They’re more frequent than they once were, but definitely less than other cycles of this too. The good really honestly outweighs and out numbers the bad. Most importantly, she still has incredible days and even weeks in between them. She has a new central line for TPN which is working really well now. The details are foggy now because I try to forget them so that I don't get hung up on it, but the process in getting this line was not our best collectively. I know I could have done better- I was frustrated, exhausted, and deflated and it took me a while to speak up to the right people. Initially, she had her line replaced because it was leaking, bleeding, and not flushing very well intermittently. She had that line for 3 years and the day it was replaced was not a good communication day for the surgery team and the SF ER doctor. After that was resolved, we went home with a new line, but it ended up needing to be replaced again 7 weeks later. Those details don’t really matter- she’s doing better. And she's definitely cared for by every doctor and nurse she's seen, and probably even more she hasn't seen.  Those were very tricky weeks though, and ones I don’t really want to revisit for all kinds of reasons; even here. Moving on, we're celebrating the improvements and better days. At night especially when I’m going through papers, emails, and trying to figure things out; she always says, “have hope, mama”.  I promise I do, Kaitlyn.
                                    

          

Standing still

I’m at the bottom of my second pot of coffee and Kaitlyn doesn’t need anything for 2 hours. So I can either write here or bake more cookies. I pick here.

If it’s possible to drink too much coffee, I think I may have hit that volume. I can feel my heart beating in my foot. All the energy and lack of energy packed in the same moment is hard to navigate in. I want to scream, hug someone, cry, go somewhere, stay here, write it out, run from feeling all this, face feeling all this, fix something, and knock things over; all at once.

Two weeks ago our house was broken into. Whoever it was only went through my room. Or at least only obviously went through my room. It felt so personal and gross. My drawers were all open. All my things were out, exposed and just messed with. No one in our life goes in there, or looks in my drawers, especially not my underwear. I feel like I went through a whole process and I just now, in the last few days got to the place I can say it out loud. The first day I was ashamed and embarrassed. Second and third day I was so deflated and sad- everything made me cry.  Then I had a few days I didn’t trust anyone in public- everything made me jumpy. As those days passed, I settled into days I was pissed. I was more daring those days, saying things out loud I probably shouldn’t. Anger is weirdly easier to function in and deal with than sadness. I know this little break-in is not the end of the world. There is so much more going on than to let that take over. But it’s also such a violation.  Not because of the stuff itself; but because of the space that was private, personal, and just my own.  I wish people who did awful things realized the impact they leave in the midst. The day it happened, I reacted entirely wrong. I melted, cried, and cleaned up. I was stuck in the ugly cry. I didn’t want Kai to find out especially because he’s so fiercely protective and he believes the police can and will solve everything. I felt ashamed. I did nothing wrong, but I felt so gross. There was dirt on my mattress from where I think they stepped onto my bed from the window. I washed that too, cleaned the walls, and cleaned everything I thought whoever it was touched. I used an entire bottle of Clorox Clean-Up that night. I literally have $12 cash to my name, and they left that. As far as I can tell, they didn’t take anything. I can’t wrap my head around why. So many things in our life that’s what I’m asking, why?? Whoever did it probably hasn’t thought about it since, or has moved on to being an asshole somewhere else; and here I am nervous to get dressed, locking my door 4 times to make sure, and constantly looking out my windows and doors. I think all the life happenings and heart heavy days of the past month especially; I’ve learned more than once that stuff is just stuff and it really doesn’t matter. I don’t give a flying crapsicle about material stuff.  However, I value the space we’re in because it’s our safe zone. This is where we can dance it out, laugh, cry, talk, bake, and just be. And now it feels different.

Both my kids have faith in people that even the most hesitant person to trust others could be inspired by if they took the time to listen to either one of them. Kaitlyn somehow only sees the good, right, and beautiful in everything. Kai believes in government like no one else I know. With so many people angry with government, I prefer to listen to Kai. It doesn’t matter if he’s right, or if government is wrong; it’s such an inspiring thing to see Kai talk about. He whole heartedly believes that the people in government want to and do good, for others. He talks about history like he was there for all of it and he has this indescribable enthusiasm for all things America. Kai has such determination in his eyes. He has this intense look when he asks me a question about fairness or logical explanations for questions so big, I can’t find an answer good enough. I have to be honest and say I don’t know when I don’t. When I get that look, I want to do anything to find the answer. And every time I search for it with him, I learn more and am even more inspired to keep charging forward. Both kids and I met with Senator Mike McGuire late December. I wish I had taken more pictures or written more down that day. I could tell by watching Kai’s eyes and all our conversations leading up to that and after; he believes every word Senator McGuire said and he was and is completely awe-inspired. Kaitlyn and I were (and are) too. I don’t know how or when things will get better, but I have a lot of faith in McGuire. That’s part of what’s heart-heavy and frustrating with a standstill; there are some incredibly good people in this who truly do want to make it better, and yet we still aren’t making enough progress. Yet. That's not a fault or a blame- just an acknowledgment that waiting through a process can feel incredibly still.  

                                                

Last week I received a letter from an attorney for the Department of Managed Health Care. I’ve spoken with her many times, but the letter felt like a formal finality. It’s weird, great, and yet feels defeating to receive a letter after sending out so many. I sound ungrateful, but I am incredibly honored to have the interactions I have had in this process. It’s also very exhausting to not have results. In this advocating, one answer sometimes leads to another avenue. And then sometimes, it leaves me stuck, trying to figure out what I can do next. All the hours turned days, weeks, and months spent advocating for a better system; reporting the lack of standards, asking for accountability, record keeping, note-taking, calling, leaving awkward messages, meetings with ironed pants, jumping up and down in my living room with Kai when things seemed forward-moving, laying on my bed sulking when it felt stuck---all of it. It feels. That’s not even a sentence except it’s the most honest way to describe it. It feels.

Pediatric home nursing care is not safe as it’s set up. No one I’ve spoken with on these issues is arguing with that fact; yet no system or person is able to fix it yet.  There are many kids with very complex medical issues who don’t have home care, or who have incredibly unsafe, unaccountable home care. This is unacceptable and should be shocking, talked about, and fixed. The system it’s in is a cluster of agencies that don’t communicate enough. It feels like each system finds a loophole to deem itself free of finding the answer. It’s impersonal yet it feels so intensely personal because Kaitlyn deserves better. All kids who need home care deserve better. California Children’s Services, Sonoma County Public Department of Health, Kaiser, Department of Managed Health Care, Senator Mike McGuire, North Bay Regional Center, California Association for Health Services At Home (CAHSAH)- they all responded back to me. And while I do feel incredibly grateful and so humbled by this experience as a whole, I want to be more productive. We can do better. We should do better. All of us.

Home nursing care is covered in this illogical grey area so that insurance doesn’t have to cover it in the sense that they’re accountable for it (at least not Kaiser after many letters, calls, and a lack of answers). Kaiser found a loophole for accountability. The biggest loophole for accountability is in the agency who got rid of us for advocating for accountability. As a small agency, they're not overseen by Department of Managed Health Care. What they did to us was awful, and we aren't the only ones they got rid of.  CCS (California Children’s Services) and Medi-Cal covers home nursing hours, but they can’t seem to do anything about the lack of its availability, accountability or training and they don’t oversee it. In our experience, hospital nursing and clinic nursing is very different- it is skilled, there is training, and the system is a lot more clear. Medi-Cal doesn’t pay enough. So the reimbursement for agencies that hire nurses is very low. This is a part of the problem, but doesn’t define it in its entirety. Just because an agency doesn’t receive a lot of funding does not exempt them from not providing what they say they do, or to treat people poorly, in my opinion. The only agency in our county that was providing pediatric home nursing care at the time we had it; was reimbursed $40.57 an hour for RN level care (according to an email from the owner of the agency sent out in November 2014), which is what Kaitlyn required. Yet they pay their nurses $17.50-$22.30 an hour. The agency overhead is also in a grey area that we aren’t entitled to know.  No uniforms are supplied to their nurses, no gloves, soap, hand sanitizer, or any supplies (those are all supplied by the patient and/or the nurse personally).  There was no training for any of the nurses Kaitlyn had, no in-service days, etc.  Not ‘a little’ training- in actuality, there was none. There is no accountability to patients or parents on how many hours they’re charging or claiming. None. Public Department of Health licenses these agencies, and they’re investigating currently. The hope is that this is done thoroughly.  Hope. That’s what I’m holding onto.

Yesterday, I spoke again to a supervisor from CCS. She’s thorough, incredibly compassionate, helpful, and I whole-heartedly think she’s doing everything she can. She recently called another agency on our behalf, who is said to provide home nursing care in our county, but with no nurses available. Kind of like a store saying it sells something but it doesn’t and you don’t know if they ever will, but they say they will- with no time frame. Clearly then, the store isn’t selling that. Right? Except that pediatric home nursing care is more important and should be considered more urgent. I don’t think an agency should be able to claim to provide something it is not. We are among 25 others on a waiting list. We've been on that list since August of last year. I’ve heard of another family (not our county, but still in CA) who has been on a waiting list for that same company for over 2 years. How is this ok? It isn’t.

I wish I had an update that was filled with answers and a clear plan, but I don’t. I guess in actuality, we never really do.  I don’t know if navigating in all these unknowns gets easier, but we do function better in it. Some of the unknowns are big and could swallow us whole if we let it. Kaitlyn, Kai and our close circle teach me every day to slowwww down and appreciate what’s right here, right now; in spite of all the coffee. The standstills must have a lesson too.