Quotes & art by Kaitlyn

Today I went through notebooks, binders, notes I wrote on my not-always-so-smart phone, and collected a lot of the quotes I've kept that Kaitlyn has said. In going through all those notes, I've realized I have failed to return many calls or sign forms that look especially official. Sorry.

So, in Kaitlyn's words (over the last few months):

"I really like to have dry hands in case I have a run in with technology. Plus, I'm really not a fan of being electrocuted. I just love knowing how to stay electric free."

"Do doctors make deals? Like if I say I'll draw 50 hearts, would that make a deal for no feedings? Or could you just make them cookies if they're real healthy and fancy?"

"It's great to be a Kaitlyn. I love being me!" 

"Hey mommy. Is it the middle of the night? I can tell because you're answering me really slower."

"Where is this France you speak of?"

"I love the sunlight best when it calms down and darkens up a bit."

 

"If I went on an airplane, I'd just come right back home."

"Sometimes we just love because we love. Like dolphins. I don't know the why, but I love them."

"in the night, if I say MOMMY really loud, sometimes you bonk into things. So I try and say it quieter if I remember."

"My favorite things is art, projects and making designs for dresses. But the most important thing is to love."

"Sometimes I don't learn something. I just know it."

 

"I would like the doctors to give me back the bones I used to have. These ones don't work so well."

"We all have a little bit of sneaky in us. I know about the chocolate under the kitchen towels, Mommy."

Art by Kaitlyn is one of the best surprises in a given day.  She'll make pictures for us, and place them where we'll see them. It's contagious too, this art parade they do. A few days ago, the coffee pot was labeled, "I love you Mommy." which was our Kaitlyn. And the next morning, the coffee pot was labeled "crime scene. NYPD." which was all Kai.  Kai will also surprise Kaitlyn by making her pictures and folding them next to her when she's asleep, and she saves all of them.

She made this one for her doctor. She makes a lot of art for him, I think she's a fan of that guy.

Another one for her doctor...

This is the letter she worked on for 2 days. She asked how to spell words, but this is all her. This was the first letter she wrote out since writing the one to the president about turning the White House purple for epilepsy.

She was mad about starting TPN, so made this for her doctor to show him how it made her have "the itches". 

For Rita, one of the many awesome nurses who Kaitlyn loves.

She surprised Kai and I both with this, and put it on the table. You can tell when she's about to put art somewhere, she's all giggles.

For her neurologist in SF. "she's my doctor in the city and she helps me not have the shakies. She always has blankets and fixes my magnet. Everyone in the city has to know her."

For her gastroenterologist.. she really likes him, but she was mad that she had to have tube feedings, so she's letting him know. I love how she still has flowers, and they're both happy. The spunk in Kaitlyn shows here too, she's the only one with an umbrella.  Then she felt bad, so she made him another one-with hearts and no rain.

For her Kai..

 What Kaitlyn says a seizure feels like..

 A "no seizure" day

cautiously optimistic

Kai: “It’s okay, mama.. I’m totally trained for this.”

Kai’s perspective helps me find focus even when it seems impossible. They way Kai sees the world is incredibly refreshing, has set limits, guidelines and order. He often teaches me more than I signed up to learn in a given day, and I’m thankful for each lesson.

April & May are hard to summarize. I may have this out of order, and in some ways, I’m nearly as lost now as I was then. We were mostly prepared, and sometimes not. I lost my confidence in this, and then found it again, yet cautiously. 

First, I hate suspense (anyone who’s seen a movie with me rated over PG-13 can attest to this) so I want to be sure you know: Kaitlyn is doing a lot better. She’s more alert, having significantly less seizures, is in less pain all around, and the cluster of vomit days have stopped.  How did we get here? I honestly have even more questions now than I do answers. 

Mid April-ish Kaitlyn was admitted in SF for a Broviac placement (central line). This has the same function as a PICC line, but it’s more permanent, or long-term-depending on who explains it.  The PICC line was being a pain so it needed to go. The Broviac ‘surgery’ itself went well. SF was great with Kaitlyn. The day after surgery, she didn’t do as well. It turned out to be a result of the anesthesia. Anesthesia is usually seizure security for us, but this time it didn’t do that. She was off so we stayed an extra night. She hurt, was off balance, and didn’t have the bathroom control we were used to her having. Getting home that next day was hard, but it also seemed like I could do for her at home what we were doing there. And we needed our Kai. 

The good things about the Broviac: it flushes super easy.  Dressing changes are a million times easier. It seems more ‘secure’, as secure as any of this ever is. Labs can be drawn from it easily (the PICC line had a good lab draws initially, but then became stubborn). 

Things I hate about the Broviac: it’s long term. I don’t like that word combo anymore, unless it's regarding chocolate or coffee. The extension tubes (there’s probably a cooler word for those things) are annoying because they’re there. It delivers TPN, which I don’t like. 

I did get to go to SF for something non Kaiser, and kid free in late April. I was able to go to an epilepsy research fundraiser for the C.U.R.E. I got to dress up, get my hair all fancified,  enjoy a girls night out with friends, wear shoes that I couldn’t walk in, laugh, cry and be surrounded by a roomful of people who understood what we were all there for. We all hate seizures, need a cure, and we all want someone we love to get better. It was inspiring, uplifting, and I learned I’m not made to walk in heels. 

After the Broviac was in, things were going okay initially, although even ‘okay’ has been redefined more than a few times in this. Then she started vomiting in cycles that I couldn’t break. It was hard to tell what initiated what, but seizures were worse and clustering in cycles as well. The more she threw up, the worse the seizures were. And the more seizures she had, the more she hurt and vomited.  The only thing that seemed predictable was she was miserable.  I have no idea what it felt like to be her, but it was awful to endure just as a bystander mother. She even looked like she was in pain in her sleep. We tried new medications, stopped them, tried again.. it didn’t seem like anything was working. Describing the entire process would take longer than anyone has, and more than I could put into words;  but we ended up with an Oakland plan. Oakland already was my least favorite solution, but I understood why we needed to try. Kaitlyn needed to have that cycle stop, and to have new doctors with new perspectives see her. 

I drove Kaitlyn to Oakland. Ironically, she didn’t throw up the whole way. She slept all curled up in the backseat.  Getting there went smoothly and her first night was good. She got started with IV fluids which seemed to curb the nausea. Could it be that simple? They switched the meds they could to IV, and put meds into the J part of her GJ tube.  They also added Benedryl by IV. She still threw up in the morning, but it was less. She wasn’t as miserable. In re-evaluating Kaitlyn’s care in its entirety, a doctor came up with the plan to do less meds. We started to wean Kaitlyn off meds she didn’t need. We took her off 2 medications and she did significantly better all around. We made multiple changes and putting meds further into Kaitlyn’s digestive system through the J part of her tube helped, but it’s obvious one medication especially was doing more harm than good. 

The guilt I felt in a medication hurting Kaitlyn was more than I could take initially. I blamed myself. I’m responsible for Kaitlyn and should have noticed.  How could a medication set to help, actually hurt? How didn’t we know? Why? The list of “what if’s” haunted me daily for a while. 

Part of why I felt so horribly was in how the plan & information was relayed initially. One doctor can say things one way and the same information if delivered differently would be heard completely differently, which would in turn create a different reaction. This is true with any form of communication, right? Am I rambling aimlessly now? Yes, I am.  I really don’t want to focus on what went wrong or how I felt in this process so I’ve struggled a bit with how much to write about Oakland.  The good in Oakland is the overall outcome. The crappy part of Oakland was in how one doctor treated me. I let the hurt I felt in that guide more than I should have.  In truth, every doctor and specialist there was respectful, compassionate, thorough, treated me as a part of the team; all with the exception of only one. For as many doctors as we’ve seen, to only have this experience is both more than enough, and yet is also significant in how I feel about Kaitlyn’s care overall. She’s truly cared for completely, which is what counts most. 

As one person put it best, I had my first, and much needed “WTF!?! moment”. After my initial interaction with the doctor who was incredibly disrespectful, and her first plan-which was drastic and making no sense in my whirling mind; I cried in a ball in the most uncomfortable Oakland chair next to my sleeping Kaitlyn. Of everything I felt, I felt overwhelmingly scared for Kaitlyn, and completely taken over. The more I cried, the more I cried. I thought crying was healing? It just clustered on itself. I felt like I couldn’t breathe. Which in that moment, reminded me of swimming laps. When nothing makes sense, I try and relate it to something that does, or used to. While swimming, if I felt like I couldn’t breathe, I’d slow down- but I wouldn’t stop. You clearly can’t stop and breathing is vital. So, I took a break. 

Kaitlyn was sleeping and I took my phone with me to find fresh air. I found a bench outside and called Kaitlyn’s neurology nurse in SF. I had planned on holding it together, but that didn’t work out so well. I cried in between words I don’t even remember saying. She listened to me thoroughly, was validating,  made me feel part of Kaitlyn’s care again, and asked me if I talked to Kaitlyn’s doctor. I hadn’t yet because I was busy melting and acting like a sad 5 year old. I looked up after talking to her and realized the bench I picked to cry was a bus stop. This fueled my feeling of being non observant. I can’t even tell when I’m at a bus stop? How can I take care of Kaitlyn? I got myself back up to her room and laid next to her. I thought I felt better, but I couldn’t stop crying. Things the disrespectful doctor had said were stuck on replay in my head. I talked to Kaitlyn’s doctor, who often helps me to feel more capable, as Kaitlyn's care team usually does.  In talking to him, I went back to being that crying 5 year old. I'm pretty sure I haven't been such a babbling crying mess like that to him before, and thankfully not since. He was validating, and relayed the information so much differently, it almost made sense- but being a cry head in that moment, it didn’t totally, yet. Sometimes I say 'yet' before I believe it. I heard that conversation better the following week. He helped me focus, even though in that moment, I wanted to take Kaitlyn home, or to France. Anywhere but Oakland. I hated Oakland, I felt like the worst mother there could be, I missed Kai more than I could handle, and I needed to feel like I was competent enough to observe when I was at a bus stop. 

I decided to sleep on feeling that way. Maybe sleep would empower me to come up with something less 5 year oldish then “I WANNA GO HOME”. Sleep may have helped if I knew how. Kaitlyn was in the hospital, sleeping and doing better, and I was a disaster. The conversation I had with the disrespectful doctor was stuck in my head, and I couldn’t even remember the validating, compassionate conversations I had with people who actually know me. I cried until my eyes swelled and forced sleep upon themselves.

I woke up with a stronger, more competent voice than I had the day before. I wasn’t as broken, I was still upset- but in a constructive way. Constructively upset? It’s possible.  Kaitlyn inspired me more than I have words for, as she always does. I laid next to her, and she was awake. She was awake! We talked, giggled about goofy girl stuff, she painted, we snuggled, sang the Sunshine Song, and she told me to stop saying I was sorry.  I felt a bit more capable, but I had (& still have) more work to do too. I talked out loud about how I felt to doctors there. In talking to the attending pediatrician he said he understood how I felt and he was on board with us transferring to Santa Rosa. And that’s exactly what we did. The EMT’s and nurse in the ambulance that transferred Kaitlyn were great. They all had a sense of humor, which I needed in that moment, and they instantly cared for Kaitlyn. Santa Rosa was great, felt like home, and we made a lot of progress there. When we got to Santa Rosa, there was a note for Kaitlyn. They embraced her, and I gained the confidence to move forward. And from there, we went home. 

Where are we now? We are still in the area of much improvement, and we’re HOME.  Kaitlyn is doing better overall, and we still have a ways to go. Kaitlyn had another EEG a few weeks ago which was similar to the one she had months ago. That was hard news, but the reasonable, level headed side of me (anyone who knows me, stop laughing!) understands and isn’t entirely surprised. We are going to wait until she’s more nutritionally stable before the next one. Hopefully as she gains weight and is doing better overall, the EEG will be happier as well.  She’s thoroughly being cared for by the doctors and specialists who know her. 

I'm actually thankful for Oakland in more ways than one. I'm mostly thankful because Kaitlyn is doing better. I'm also thankful I learned how to speak up better. True I'd rather not learned that way, but I'm thankful anyway. 

Kaitlyn initially was taken off TPN which was beyond exciting, but ended up being too fast a change. She’s back on it, but she’s also on formula; and feedings are going much better. She’s tolerating formula better. She’s only vomited twice since being home, and those days were rough seizure days. She’s had seizure FREE days mixed into every week now. She soaks up every moment, just like she always has. She has her days and nights a bit mixed up, but 3am Kaitlyn conversations are alright by me.  Some of the art she’s made lately has me stumbling. She’s beyond remarkable, incredibly inspiring, full of hope in everything that is good, and she's all love. 

It takes a village..and we are sooo thankful

The endless support, calls, emails, messages, check ins, smiles, hugs, and the security in knowing we aren’t anywhere near alone- it’s amazing. Amazing doesn’t describe it right. I still haven’t been able to articulate this because my heart gets stuck and tangled in my head and I can’t form any words, let alone the right ones. These last few months had potential to be overwhelming and near unbearable, but we made it. And we are stronger because of the love shown for us. Community is amazing. I had no idea what community truly meant until these experiences clustered. What a great predicament it is to have a list too long to complete because of how enormous it truly is. 

It's impossible to list all the good examples of this, but here are a few:

Driving through Windsor, passing Pohley’s Market in February, there were hearts for Kaitlyn which covered the entire window. For St. Patricks Day, clovers.. all in support of our Kaitlyn. That visual on trips home from SF, home from Santa Rosa, or just heading home from anywhere, it made every sad thought go away. I’d take a break from feeling the enormity of how hard this can be, and feel the enormity of how much support we have instead.

An amazing group of supportive people, some of whom initially, I hardly knew- held a fundraiser for Kaitlyn in April. They planned it together for many months, selflessly. They just did it, and I have no idea how. I can’t wrap my head around it still. The effort that had to have taken is beyond me. Seeing the love and incredible effort for Kaitlyn gives me strength each day. 

Another group “Men R Pigs” picked Kaitlyn for their annual golf charity event. I don’t know anything about it really (or about men, pigs, or even golf)- they just did it, they gave in love and support of our Kaitlyn. I don’t know exactly how they learned about her or picked her, but I know it has to do with the love and support that never ends in this community. 

My sister, who is a dispatcher in Portland sent me a video her many coworkers put together. Each person held a Mother’s Day sign. What a complete honor that was.  They have all reached out, and they don’t’ know us. Yet they do know us now. We are all in this crazy and beautifully clustered life together. People just do. They do more than we could ever imagine, predict or even articulate. There truly is more good in this than bad. When asked how that is true recently, I couldn’t think of the right words. But that’s just it, there aren’t words. Just look around. 

The short story: Me and the CADD pump are no longer friends, and it’s definitely not invited to my next 25^th birthday party. 

The long story: First the great news- Kai turned 8 on Saturday! Initially, he didn’t want to turn 8. His best friend isn’t 8 yet, and Kai wanted to wait.  (I’m okay with waiting!).Even so, I had this grand cake plan in my head, and I took a sleepy Kaitlyn to the store to see if they had stuff to make the grand police cake happen. Backing up.. before the store, Kaitlyn vomited all her meds, so we repeated them 2 hours later, and waited to see what would happen. More vomit happened, but thankfully didn’t look like meds, so we carried on. Normal people make cakes on birthdays, and I wanted that accomplishment, but I overcomplicated it. 

The store had something called fondant, which seemed genius. I really don’t know much about it, except that when I had cable, I used to watch this cake show, and that guy made it seem pretty fun. The cakes  looked all organized, clean, and pretty. The store had every color, and it said it was rolled. It was not rolled. Unless rolled fondant means it’s a giant block of ick. Pushing through anyway,  I “made” uneven sirens, crime scene tape, a shield (that never resembled anything remotely close to a shield), an oval (not sure why, I think I read something about an oval that would make something police-like on google), and then I decided I would roll the 'rolled' white fondant for the background. That super cake guy makes those. Awful idea for me to try. I saw the “fondant roller” and all those tools, but I figured those were just marketing ploys to make this fondant plan cost a million dollars. Turns out maybe they might possibly have a role, as I did not have the fondant 'roll and cut' thing down, at all. Sticky, gooy fondant, and being the impatient cake stacker that I was= disaster. The cake looked awful. Kai was very sweet- he said “it looks like cake. You’re still a good baker.”  I also gave him a few spoons of frosting, so he was probably in a sugar daze. Luckily, I had a backup plan, a cake that was already made by the bakers at Safeway that comes all perfectly round and pretty. I put my fondant shapes (skip that background fondant plan!), and as many police shield toys, handcuffs and candles as I could find and would fit. We were going to have a normal night, complete with handcuffs (technically they were plastic leg shackles) on a cake..

But then… Kaitlyn had seizures. I blamed me. There was too much excitement; I created too big a day. My cake was too busy.. I didn’t pay attention to her enough before a seizure to prevent it (cause I surely have thaaat power). Guilt in this never goes away, no matter how rational I try to be. But then magically, even in my feeling guilty and deflated- when I practically lit the cake on fire (I used ‘re-light candles’, they spark, they make sounds like fireworks, they are very-very smokey), Kaitlyn opened her eyes and smiled for Kai’s birthday. As soon as he blew out his candles (and all smoke detectors were letting us know they work), he went and laid down next to Kaitlyn on the couch and they were so happy together. That moment made every goofy detail before then, completely worth it. So much preparation goes into one moment that makes the entire day better.

Fast forward (in an over-worded novel like way) to 3 hours after that, and I was late on getting her TPN started. 3 hours late...which is super late. After I had everything prepared (late), I put the saline syringe on her TPN line, and it wouldn’t budge. I couldn’t get it to flush. That’s never happened on that line. I thought maybe it was position, and moved her sleepy arm in every direction. I talked to the CADD pump in case it had anything to do with it, watered the houseplant.. I changed the cap, used a different syringe, cleaned everything with alcohol pads.. I couldn’t get it to flush at all. I left the room, came back, left again. I had no idea what to do. So, I called the Kaiser advice line.. after letting them know I had not moved in the last 24 hours since we were last seen and confirming I’m her mother for reals, have the same phone number, I have not left the country, and that Kaitlyn was breathing, their doctor said we should go to the emergency room and have her PICC line looked at. I tried one more time to get that TPN line to cooperate. Still a fail. Then I picked up a sleeping Kaitlyn and put her in the car. Kai, all cozy- packed his NY taxi car, and cooperated 19 bazillion times better than the TPN line. Long story a wee bit shorter, the Kaiser nurse was able to get Kaitlyn’s TPN line flushed. The Xray was good. Her line showed some “resistance”  in flushing; but her changing position, or luck, or something magical, made things better. I thought we were clear, so off to home we went near 2am on Easter morning. 

We got home, I got Kai in bed- then he climbed into mine. I got Kaitlyn all set up for the TPN feeding again. Line flushed (although definitely harder to flush than the previous day). CADD pump on. I thought we could now have some sleep visit us before the Easter Bunny did.  The CADD started beeping louder than the smoke detector from my cake-on-fire earlier.  The pump wouldn’t work, saying the line had an occlusion upstream. Upstream?! No idea what that meant, but the beeping was not fun. The nurse earlier had said to change Kaitlyn’s position if that happened, even having her cough might help, turn her head, put her arm down, to the side, up. In all ways except taking it off and completely turning her upside down.. I changed her position. We were stuck in beep city no matter what I did. I turned the bleeping, beeping CADD off, and we had a few moments of sleep. Easter happened. Hippedty Hoppedty.

We ended up back at Kaiser, and Kaitlyn’s CADD pump was figured out and re programmed (by a super helpful and awesome nurse!). The pump was a spazz, all on its own, and separately from Kaitlyn’s line having resistance (which is not the end of the world, and can happen). Tomorrow she’ll go in and have her line looked at and flushed better (they had better terms, but I already forgot them).  Kaitlyn felt pretty miserable the majority of today. She slept most of the day; and when she was up, she wasn’t feeling good at all. Tomorrow is a new day, and for that I am so so thankful. And while today was hard, we had some amazing moments too. Kai + police gear+ sticker mustaches=  a lot of fun. The CADD pump is working tonight, and tomorrow I’m ordering a new one. This one and I are breaking up. 

What's in a day?

Sometimes it’s tricky to tell when a day is beginning, or if it ever ended- but here’s my best at summarizing a “typical” day. No day feels typical though, and no matter how difficult and heartbroken I can feel in a day, there truly is more good than bad. Kaitlyn and Kai both teach me that repeatedly. When this feels like the end of the world, I close my eyes and think of something Kai told me that day, or a sweet kid snuggle I got before the rest of the world was awake.

So, here goes:

5:45am- prepare 6am med into medicine dispenser syringe, and put in Kaitlyn’s G-tube – the extension tubing is usually still attached from the night before. Flush with 10ml of water.  Check on Kai, turn heater up, start washing machine, find socks. For as many socks that go into the washing machine, it’s rare I get half of those back. But for some reason, my Christmas socks never get eaten by the washing machine.  So in case you see me in public, no- I don’t have a thing for Snowmen in April, it’s just the only pair of matching socks I found that day.

6:30 am- turn music on, grind coffee, wash hands, get the rest of Kaitlyn’s seizure medications measured and prepared, detach (from Kaitlyn’s tube) and then re-wash the G& J tube extensions from the night before. Wash hands, get saline & heparin syringes out and prepared (prepared makes it sound so official, all I really to is open the top without touching the end that goes back on the syringe, get the air out, clean with alcohol pads just in case, and then put the cap back on, ), get a new cap ready/attached to saline syringe. Argue with plastic thingies that don’t open right, or fling across the room (the plastic things fling across the room, not me.. yet). Wash hands, ask the paper towels where they went and then find them when they don’t answer. Hand sanitize myself... then sing to Kaitlyn cause she’s still not a fan of Lyle Lovett.  

Around 7am- CADD pump beeps  3 times- it’s done, I answer it, cause we’re practically friends now.. turn the pump off- clean cap with alcohol pads. Hand sanitzer shield on again incase little bacteria found me. What? This is normal, OCD is not me... Take cap off, replace with new one without touching anything (it’s magic), flush PICC line with saline, then heparin. Clamp, un-clamp, clamp.  Take tubing off the CADD pump, battery out, wipe everything down, wash, talk to plastic thingies.  Wash hands, find coffee cup.

7:30- seizure meds into G-Tube port. Clean tube extensions; throw away all the leftover plastic pieces I argued with earlier, except the ones I inevitably missed so I can step on them later and say bad words which in turn, I owe Kai a penny for. Music louder, coffee in cup, coffee on me.. re wash. Get Kai’s outfit out of dryer because I can’t ever seem to find the load of folded clothes in a basket (and they definitely didn’t fly into a drawer recently).

Clean, wash hands, find more coffee (don’t count the times I write coffee, that’s not allowed) Kai wakes up- I make him breakfast, and we get to sit down…. Sweetest Kai words happen here.  A tired Kai with food is a sweet,  happy Kai.  

We pack up Kai’s bag, I trip over police cars, look all over for the keys, and we get him to school.  Depending on how Kaitlyn is doing, she either walks to the car, or I carry her.  On weekends and breaks, we snuggle, talk to Kaitlyn, read together, & I get arrested by Kai for various things. 

~8:30/8:45: We get back home after dropping off Kai, Kaitlyn usually doesn’t feel good. Moving around to get in the car is usually too much. We talk, I hold her, then lay her down on the couch. I start the “kangaroo” pump.. not sure why it’s called that. That goes to her J-port in her g/j tube.  Add formula to feeding bag (seriously there should be a cooler term than ‘feeding bag’---I’m workin’ on it). Prime pump. Attach tubing to Kaitlyn’s J-Port and start pump.  Find coffee cup..

11:45- prepare noon meds into plastic syringy things that go into her G-tube, clean out extensions. I over clean those… maybe. Coffeeeeeee.

12pm- Noon meds into g-tube. Wash what’s leftover of hands, tube extension clean again.

2pm- Wash hands, then put 2 pm med into g-tube, flush with water. Hands washed, clean the tube extension.  Take Kaitlyn off the tube feeding, flush J port with water.

2:30- Get Kai from school. This is one of my favorite parts of our day.  In picking up Kai, I get to see his expression light up. He often sits on the side, with kids playing around him, all cutely tucked into his own shirt and it looks like he’s in his own world. Then he sees us, and he smiles so big his whole face lights up.

3pm- Take the TPN bag out of fridge so it is warm enough for Kaitlyn in 4 hours. Make cool laser sounds with Kai, or he arrests me again. 

3:30ish- J-tube attachment back on Kaitlyn. Put “kangaroo” pump back on. We are raising it by 10ML an hour until we reach our current goal of 50ML/hour for 10 hours a day. The goal is to get more tube feedings so she can be on less TPN. Right now, we are at 20 ML/hour and we just got to that.

Figure out & make Kai dinner in here somewhere, even if it’s a lazy sandwich dinner.. find coffee cup, talk to the last remaining green houseplant, begging it not to keel over yet. My friend Carrie got that for us when we got back from SF, and it’s gorgeous. Yet every day, something green or bloomy falls off of it. Not cool, houseplant! Laundry, forms, reading, researching, and hoping.

6pm- 7:30pm: Start getting seizure meds prepared, tube extensions cleaned, wash hands, vitamin vials out of fridge to draw into prepared syringe to put in TPN bag. Clean TPN bag end thingies with alcohol pads, set everything out after cleaning tray. Not cleaning tray. The clean tray. I don’t have a cleaning tray. Ack. Restart.. Clean with alcohol pads before inserting vitamins into TPN bag, clean alcohol pads with alcohol pads.. No. Not really. Prepare saline syringe, set up CADD pump with new battery- attach the thingy until it beeps 3 times and has written out “Power up successful!”. I don’t know why I think that’s funny to read every night, but it makes me giggly...   I’m glad the CADD pump approves of my ‘powerup’. Talk to CADD pump.. it helps, I swear it. Prime the CADD pump by pushing the letter Y over and over, and over, over. It will ask me 8000 times if I still want to continue priming- then I make bad jokes about the word prime, to myself.. CADD pumps are actually hilarious, if you read them wrong. Kinda like some people..

Set up CADD pump and tubing into over-complicated backpack made specifically for CADD pump and to be annoying with little Velcro thingies and diagrams that I argue with every night.  I named the backpack, McFriggin. Kaitlyn says that’s not nice. Kai says I owe him more pennies cause it sounds like a bad word.

Give seizure meds through Kaitlyn’s G-port, flush with water. Attach, un attach extensions, talk to Kaitlyn, sing the Sunshine song..  Clean anything that touches or could potentially touch the PICC line attachments with alcohol pads. Clean self with alcohol pads.. okay-no, not really. But really?

Clean the now- not clean tray, wash hands, check for air bubbles. I’m now chronically addicted to checking and worrying about air bubbles.  Make tea without air bubbles. See, I’m not allllll coffee.

Somewhere between 6, 7  or 8pm, turn “kangaroo” pump off, flush with water (it all depends on when I started it, and how many times I turned it off during the day). Read with Kai, talk about our day & start bed time routine.

 10pm:  10pm seizure med into G-port. Leave that over cleaned extension in.. I’m tired now.

Midnight: Kaitlyn wakes up, she’s itchy, sweaty, not feeling well, has to pee, sometimes vomits.. Up, down, awake, asleep.. talk to Kaitlyn, carry Kai back to bed, or let him stay in mine,  sing the Sunshine song- but I start to sound slurry and forget the words until I drift off and sleep in bits.

3am: If she’s not feeling sick, Kaitlyn is sometimes wide awake and wants to talk. Not sure why, but she’s had a thing for 3 am for a while..  As tired as I am, talking to Kaitlyn around 3am is one of the sweetest things a day has to offer. We’ve talked about her art projects she aspires to do,  boys she’s liked, how she wants to go to prom, that she’s not tired, she loves pink, wants to know where Kai is sleeping, if birds sleep…  are there pink birds? Oh. My. I love this Kaitlyn.

 

And then I sleep, until the next day starts where this one hardly ended..

What’s not in this schedule is seizures. We don’t know when those hit, so we can’t work our day around them. They don’t ask permission to fit in this day, and they don’t consider what moments we don’t want to miss out on. They are the reason for this crazy schedule, but they don’t give us enough warning. There is also a lot of vomit lately, and we aren’t sure why. She throws up more, and sleeps more. Those are the hard moments, but we’re holding on to the countless good moments as hard as we can.

Positive and unpredictable sides to daily life are all the moments that I get talk to Kaitlyn, the moments I get to see and talk to Kai, and the moments I get to enjoy them interacting with each other. Their love for each other is amazing. Often the first thing Kaitlyn says is, “Is Kai going to be home today, or is it a school day?”

Also mixed in our days are appointments, phone calls, emails- all which help Kaitlyn, and they help me feel confident in how to care for her.