a long rambling update

I write for so many reasons. Writing helps me manage the few things I can control. I write Kaitlyn’s schedules, medications, routines, & notes after appointments. I write Kai’s school fundraisers, field trips down with little notes on what I’m supposed to do differently about his lunch that day. I also selfishly write things out to enable me let go more effectively. I’m hoping; begging really for writing this to help me let go of how awful I feel.

The last few weeks are somewhat of a blur. The clearest things in these past few weeks are still too vivid- I wish they would go blurry. I wish wishing worked better. Frick frack. There is something about our luck with holidays. By luck, I mean no luck at all. Christmas week was awful. Kaitlyn’s stomach tube site infection was worse & she was so miserable. Everyone we went to had a different opinion, which came with new solutions. Even with the best of intentions, nothing we tried worked. And of course on Christmas week- a lot of doctors were on vacation so making a bigger plan was tricky. I did all I could think of but going back and forth to Kaiser is exhausting. Kai was off school so he came with us to appointments. He asked one nurse, “Are you doing a human experiment on Kaitlyn? I’ve seen commercials.”

The week of New Year’s was even worse. Kaitlyn had a fever that came and went- we were going back and forth to urgent care. Phone appointments too-with doctors who did the best they could with what was in front of them, but we couldn’t figure out what was going on in totality. Kaitlyn would pop up with a new thing almost every day. A fever, a new rash, her site was a mess. She coughed a few times- which made it hopeful that she had a virus. No answer made enough sense though and it seemed improbable to me that she would have so many separate things going on. Mother’s intuition mixed with self-doubt is an awkward and unproductive place to navigate in.  I’m just a mom & while it didn’t take a genius to see Kaitlyn was miserable; I worried we were all getting used to that.  By that Thursday, I felt deflated but overriding that; I felt like something was way wrong. I fought back the annoying self-doubt in my head and kept calling. I had a hard time getting a hold of a real person. I emailed Kaitlyn’s GI doctor too even though his office had told me he was off until the following Monday- my email was a cluster of haphazardly formed sentences that didn’t make a whole lot of sense. I wanted a doctor who knew Kaitlyn to know the whole week.  I almost didn’t bring her back in- we had been to urgent care the day before. Kaitlyn’s fever returned that morning though and to me, she looked funky. No seizures, nothing I could pinpoint. Even calling again until I did reach a real person, I sounded a bit ridiculous, although that’s pretty normal for me. I called the regular advice line which usually I’m able to bypass. A nurse told me, “you know.. viruses can last 7-10 days.” I knew that, but I also knew this wasn’t a virus. I didn’t have the confidence to say that out loud, but I knew it wasn’t a virus. Even the word virus was starting to irritate me by that point.  The doctor we saw late Thursday afternoon was very thorough. He treated the week as a whole- or maybe my crazy hairdo and mismatched clothes freaked him out. Even though in that exact moment, Kaitlyn’s fever disappeared, I felt like he took it all so seriously. He ordered blood cultures through both lumens of her line and peripherally (through her arm). We had clear parameters on when to come back or go to the ER in the middle of the night if we needed. Kaitlyn’s GI also emailed me back- mentioning the possibility of IV antibiotics being the next best plan. In the parking lot, Kaitlyn’s fever came back. I even called again, in the parking lot at 6pm. This wasn’t right.  We headed back home- I was supposed to set Kaitlyn up on TPN but it felt wrong.  I started to doubt myself even more, but I also doubted what I was supposed to do. I called my friend; Susie and she offered to bring her thermometer over. Kaitlyn definitely had a high fever. I had also purchased a new thermometer that morning. Why were the fevers coming and going? Susie left & I set up TPN. It felt so wrong- Kaitlyn was shaky, her fever was going higher. She had hardly been awake that day. I decided at 2am that I was going to bring her to the ER. I set the CADD pump to taper down so it wouldn’t affect her blood sugars. I felt instinctively that getting her off the TPN was important. I packed our bags, wrote out emails to get Kai figured out the next few days if we needed. He was already at a friend’s house in case we went to the ER- but I felt like I knew we wouldn’t be home.

As we arrived at the ER- I felt so uncomfortably impatient. We’ve been there so many times and I promise I’ve been nice to people in there,  but I wanted to fast forward through the process.  Going over Kaitlyn’s long list of medical issues and medications and creams she’s taken or been on in the last 6 months was irritating. I know the process is important, but it was hard to sit through that night. The intake person checked Kaitlyn’s temperature. She was 103.2. From there things moved pretty quickly. At least to summarize it, it seems that way.  As the morning went- Kaitlyn’s temperature did the same rise and fall it did for me at home. She went from 103.6 to 98.8, to 103 again. That span was awful. So much happened Friday that made my heart feel like it was falling out at a constant spill.  It seemed like every blood test that came back had worse news from the one before. First the culture from her line was positive for bacteria very quickly. Then words came in about blood counts, bacteremia, sepsis and the infection process. By late that afternoon, all cultures were positive for bacteria.  I went from feeling inadequate for bringing her in so often to having my biggest fears confirmed. We talked about the possibility of transferring to a hospital with a PICU. Kaitlyn would have these amazing improvements, and then freak us out with a setback. I was a disaster. I’ve never felt like I was losing her like I did in those moments. 

Earlier in the same day (or the day before, time lost relevance in there), we were talking about her stomach tube site being a superficial secondary infection from contact dermatitis. Contact dermatitis seems to be a big word for “hey man, something touched your skin and your skin doesn’t like it”. We give it a fancy label, some cream and everything is supposed to be okay. Except it’s not okay. Nothing is. One of the residents who first saw Kaitlyn in the hospital looked about 15, but he asked me; “what do you think this is?” This was before we knew blood cultures were positive for bacteria. I said I thought it was an infection at her tube site, and that I’m tired of the words contact dermatitis and virus. I told him that I was catching on to doctors who say rashes with no known cause are deemed ‘contact dermatitis”. I felt like such a jerkface, but he looked 15 & it didn’t seem to matter what I thought it was anyway.

Once blood cultures were positive- Kaitlyn’s tube site infection, affection, dermatitis, whatever-it-was didn’t matter. We were swept up in a whole new level of scary.

I hardly called anyone. I had the hardest time forming words and I cried nonstop. I forgot to change my clothes as one day turned to the next. I was rude to people I don’t know. I remember one nurse came up from the ER after looking for a tube extension for hours. She couldn’t find one- but she tried to improvise with a new extension. I was so rude to her- telling her how it wasn’t even the same shape, it made no sense. I felt like no answer anyone gave me made any sense. I am not usually so suspicious of every answer handed my way.  Thankfully everyone on that floor put up with me, hugged me, and told me all the right things. I felt uncontrollably guilty, upset, beyond scared and completely deflated. I’m solely responsible for Kaitlyn. I’m the one who sets her up on TPN every day. I’m the one who cleans her line, does her dressing changes, and facilitates her care. Why was I making it about me? I’m so annoying. I exhausted myself; I’m not sure how anyone put up with me in that.  After throwing one sobbing fit, I put myself on a time out. I told the doctor and nurses that I was going to take a walk and get it together. I went into the parking lot and sobbed. The time out helped, I was nicer once I got back upstairs. That night, the doctor came in every hour at least. Every time I freaked out, she would appear and helped. Kaitlyn had a reaction to one antibiotic called, “red mans”. It turns out it can happen and isn’t a big deal once they know it can happen and preemptively give IV Benadryl before her dose of antibiotic. However, when Kaitlyn started turning red, I felt like everything was crashing around us again. Every thing that happened was so scary and came in extremes, with no warning. I sort of remember conversations I had, but I mostly remember what Kaitlyn looked like and how scared and helpless I felt. The doctor was so good with Kaitlyn and communicated each thing to me really well. There were times I was so rude and questioning everything, looking for reassurance in anything. It’s an art form really- managing a frantic scared mom on top of caring for a kid as sick as Kaitlyn was.  At that point, Kaitlyn had everything she needed- IV antibiotics were going in- they had called the specialists in Oakland and SF and were getting direction from all the right places. Waiting is the worst part. I wanted reassurance from a doctor we knew. I wanted to hear from someone I already trusted that the doctors I don’t know were making all the right decisions. I had this constant desire for someone to tell me Kaitlyn would be okay and those were the words I couldn’t find.

As it turned into Saturday, things were looking better in a lot of ways. Kaitlyn’s fever was gone. She was very sleepy and puffy, but she was doing amazing considering all her little body was fighting. Her eyes were swollen, mostly her left eye and her lips were as well. That ended up being a result of fluids she had the night before but initially they weren't sure exactly what was the cause and one of the options added more worry. They decided we needed to transfer to Oakland. The decision itself was a little hazy. The nursing care Kaitlyn required was more than someone who made those decisions felt Santa Rosa could manage. The nurses themselves were absolutely amazing- and so was the doctor who was on that day (every hospitalist we saw was great!). They felt collectively that in transferring Kaitlyn, we needed to go to a hospital with a PICU and to the closest one. I threw my next tantrum. Oakland hosts that mean neurologist from 2 years ago. I know how ridiculous that sounds and it shouldn't matter. I was entering the ugliest, loneliest, self hating zone of me there is. I felt so vulnerable. Kaitlyn- this pillar of absolute strength seemed too fragile. I felt like it was completely my fault and to top it off, we had to go to Oakland where the one doctor who has been awful to me in all of this, works. I was so scared and so upset. I never want my emotions to affect Kaitlyn's care in a negative way but in our scariest moments, it's hard to navigate with reason when emotions take over. My protest of Oakland could have affected Kaitlyn's care, and I still feel terrible about that.  I talked to the doctor about why I didn't want Kaitlyn transferred to Oakland. The doctor listened to me, and explained his reasoning which truly overrode my emotional babbles. If he thought I was ridiculous, he did a great job hiding it. He convinced me to sign the paper and get Kaitlyn to Oakland.

I finally showered in Kaitlyn’s room and changed my pants at some point that Saturday. An impending transfer isn't a fast process which turned out to be a good thing.  My sister brought Kai to us to say good-bye. I somehow managed to outwardly hold it together for that. He snuggled in and those giant Kai tears flowed, with his face buried in my neck. “mama, why do you have to go? How many days is this?” I held my 9 year old like a toddler. We snuggled on the bench outside the hospital. I explained everything the best I could. He told me, “this isn’t okay.” He’s said that before and he’s always right. None of this is okay.  I explained to Kai how Kaitlyn looked and that she had an extra iv in one arm, that medicine was helping her, her eyes were swollen and she was sleepy. Kai does best with being prepared. He wanted to see her. He went from looking melted to standing up straight, all Kai strength. The moment Kaitlyn saw Kai was so heartwarming and incredibly heartbreaking at the same time. Kaitlyn held out her hand, and Kai grabbed on. He looked scared and reassured all at once. Kaitlyn perked up and said, “Kai. You’re all I miss in here. I just ask about you all the time. I need you, Kai. I love you so much.” Kai was speechless really, and as we got closer to the door, he held on tighter. Saying goodbye to Kai was another moment I can’t stop replaying in my head. I hate goodbyes, especially tear filled Kai good byes.

The ambulance that came to pick her up contained 2 EMT’s and a nurse. They seemed like an adequate team, but ick.. I really hated every second of that day. Kaitlyn was in tears crying that she didn't want to go.  The nurses hugged me in all my ridiculousness. I got in my car and felt totally lost. I parked next to the ambulance parking lot and found another ambulance next to the one that would carry Kaitlyn. I asked the paramedic if the guys driving Kaitlyn were good. He said, “absolutely the best. That’s the best team.” Good answer. Driving to Oakland was another ugly place for my crazy head. I cried, the screamy kind. Being alone was good- I really only feel comfortable crying that hard when I’m alone. I listened to music. I fast-forwarded to songs that said bad words.  On the freeway, stuck in traffic, Kaitlyn’s ambulance passed me. The company name,  “Falk” written in paint on the back. I could see the EMT and nurse leaning down. I remember this part in EMT class. Parents shouldn’t follow ambulances because they’ll watch the ambulance and not the road. Those Falkers passed me though. Falkers. Haha. Finally, I laughed Saturday.

The transition to Oakland was amazing really. As amazing as a shitty day can go I guess. Kaitlyn woke up. The nurse from the ambulance said, “wow, she’s sure a fan of you.” Apparently that sweet Kaitlyn talks about her mama, or they just say that so the crazy lady (me) doesn’t talk more. I told him thank you as many times as I could. I wanted to say, “thank you Falkers” cause it was the one funny thing in my head, but I just said thank you repeatedly without any weird extras. I googled God when we got there and tried to be a better pray’er.  The admitting doctor was great. I swear I’ve seen him in previous admissions there, but who knows. By Saturday night, I was glad to be in Oakland. As absolutely scared as I was, I felt like things were going to be okay. Through that night and morning though, memories of 2 years ago with the mean doctor took over my mind space. By late that morning, instead of letting it take over; I talked about it, out loud to doctors, nurses, and even a social worker. The experience of the last time we were in Oakland lost its power. I got to a place I could function in outwardly. I knew if I talked to anyone else though, I’d melt and cry and wouldn’t be able to handle Oakland. I was very selective with how I reached out to anyone. I was protective of myself in a way that was most likely unnecessary but it’s how I survive my most vulnerable moments. Even in the weeks leading up to this were clusters of emergency moments where I felt Kaitlyn was the most fragile I’d seen her. Somehow in all this, when she was awake, she was like a talking Hallmark card. She’d wake up and say, “Mama. As long as you’re next to me, I’ll be okay.” And, “mama…. Your job here when I’m in the hospital is to rest.” I’d whisper to her in her sleep how amazing she was- how much I need her. The news started getting better. Blood tests were all improving. Her blood pressure normalized. They identified the bacteria & it was the same staph bacteria as her tube site infection. By the 3^rd day in Oakland, she was improving a ton but sleeping more. We all agreed she was getting sad, but it wasn’t a sign of her clinically getting any worse. We could go home. I learned how to give her IV antibiotics. I also learned how to do ethanol locks on her line. It’s not that any of that is hard to ‘learn’, but the pressure I put on myself is what gets in the way. The enormity of what happened hasn’t hit yet- but even in little bits, it’s been incredibly overwhelming.

We came home that Tuesday night. Kaitlyn finally woke up- and she held on to Kai. They both cried and cried. All through the night- I had both kids in my bed. When I would get up to adjust things for Kaitlyn and get meds ready, Kai would leap up and start crying. He kept thinking we were going to the hospital without him. He held on to me and had a hard time finding any sleep. I felt the same. 

Wednesday morning after a night of no sleep for any of us,  I let Kai stay home. The school secretary was a grouch about it, but that was okay by me. Turns out, I can be a grouch right back. He was on no sleep and our hearts were all mush at that point. Managing Kaitlyn’s IV antibiotic schedule in addition to her TPN, pedialyte to formula, medications and everything else was overwhelming. I made charts with times; checklists and color coded lines because we were alternating lumens of her line with TPN, ethanol locks and IV antibiotics. The hardest part for me was (& still is) in trying to stop feeling so guilty and responsible for everything. I can’t sleep, even when there are a few hours allotted for sleep. Images of her worst moments both at home and in the hospital keep creeping up in my mind. I’m hoping that admitting this out loud helps me knock it off.

Thursday I made Kai a big breakfast with heart shaped toast. I packed his lunch with all his favorites and set out his clothes that I had washed the night before. I felt ‘normal’. This is what ‘normal’ moms do. I couldn’t get him to wake up and his skin was hot to touch. He said, “mama, I don’t feel right”. He was 101, then 102, and then 103. Noooooooo. He was so hard to wake up all day. How can my healthy kid be so sick? I feel like the one thing I can count on is that Kai is healthy.  By that afternoon it was even worse. Kaitlyn had an appointment so Kai was seen too. I held Kai, and pushed a sleeping Kaitlyn in the stroller. Keeping the two of them separate has been so hard. Kai’s flu swab came back positive for ‘everything’. I think this has to be a lab fluke, but he came back positive for Influenza A, B and RSV. I’ve completely failed Kai. I hadn’t made it to Kaiser with him for a flu shot. I’ve never seen him so sick. Kaitlyn got her flu shot in the hospital in October. Thankfully now, he’s doing better. His fever is gone. He’s sleepy and coughing a lot still, but he’s making up codes for different symptoms (“t-y” means, “I feel like I want to vomit now”). 

One of moments that helped me turn a corner was when one of the line care nurses in Oakland said to me seemingly out of no where, “I just want you to know; this isn’t your fault.” I stood there and just cried and she hugged me, letting me cry that all out. I keep trying to tell myself that this isn't all my responsibility, but it’s hard. I hate that I'm wasting time whining. I’m also so thankful for that nurse talking to me. She had such faith in me to take Kaitlyn home and that truly helped me find the strength to keep moving forward. Also, the lead doctor in Oakland came in and talked with me about the reasons I didn’t want to be in Oakland to start with. I feel resolution with all of it. I hope we never, ever, ever have to go through anything like this again, but I know if we do have to go to Oakland in the future, we’ll be in good hands and I’m a stronger advocate than I once was. There is an amazing team there and not letting one experience with one doctor take over is an empowering thing.

Turns out all 3 of us have a lot of healing to do still and we’re all on the mend in a different way. Kaitlyn’s stomach tube site is almost clear and it started clearing so quickly once IV antibiotics were started. IV antibiotics made a giant difference. No more oozing, itching, pain or spreading. Turns out, that wasn’t contact dermatitis. Or it was initially, and the secondary infection had more of an impact than we first thought. It doesn't matter now really.  We really couldn’t have known. Of course I want to be upset with someone because blame is easier than helplessness;  but when I take a deep breath and think about these past few months, every doctor and nurse we saw absolutely did the best with what they had in front of them. I really do know that. We have a much better plan in place if this ever happens again, and we’ll go to IV antibiotics much quicker. Her blood cultures are coming back all clear now. She’ll be on IV antibiotics through next week and we have appointments set up throughout the week. Kai is very sleepy- but this flu will pass. He’s improving a ton each day. Physically I’m fine (besides being poofy where I’d rather not be). I am doing my best to remember the good to come from all this, but the scary keeps taking over. In Santa Rosa, nurses sat with me and let me cry. I have a hard time letting people in when I’m that scared, but they helped me at my worst and that in turn enabled me to better be there for Kaitlyn. This whole road with Kaitlyn has been unknown and I feel helpless. I get used to a certain level of helplessness, but this was an overload of it and it’s just going to take some time to get the me I was comfortable being back. My kids are my whole entire world and these past few weeks contained too many reminders that things can change too quickly sometimes.