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. 

The arrival of the PICC line

“When you go to the big city and over the Golden Gate Bridge, does the bridge just wait for you every day to go back to home? Cause I do.” –Kai 

When we decided IV nutrition through a PICC line was the next step for Kaitlyn, I understood the reasons why- Kaitlyn was losing weight significantly, formula feedings were not tolerable and we need her to gain weight. The anticipation made the moments before going to San Francisco hard.  I got stuck in countless moments feeling guilty that I couldn’t get her to gain weight and also feeling defeated by this whole confusing process. Another hospital stay also meant another time away from our Kai, and that was hard to explain to him, and hard to understand myself. Kai’s strength, curiosity and love for Kaitlyn helped get us through that more than I can articulate. I am the luckiest mother there is, I’m sure of that. 

While it seemed like the day of doom, arriving to San Francisco went pretty smoothly. We were greeted by nurses and doctors we knew and who already cared for Kaitlyn. It was comfortably uncomfortable, or uncomfortably comfortable? Who knows... I didn’t want to be there, but of any place to be for a procedure for the amazing Kaitlyn, I was glad it was there. The procedure went well, and that night Kaitlyn had her first TPN (IV nutrition) feeding. She tolerated it well, and didn’t have any pain associated with feeding.  Such an amazing thing to see, this sweet Kaitlyn was not in pain. 

We stayed in the hospital for a week- ensuring the TPN schedule was tolerable. Her neurologist came every morning and made seizure medication adjustments as well. Her team of doctors all collectively checked in every day. By day 3 I was missing Kai more than I could handle, and on day 4, he came to see us (a HUGE thank you to Dan and Kim for that!). Kaitlyn’s stomach pains came back, but they weren’t as bad. Seizures didn’t go away, but they were much less. 

 

This time in SF, I learned how to lean on friends better, and I learned it’s okay to say I’m not okay in a moment.  They can handle it, and they stick around. Support is an amazing thing and there should be a giant beautiful word that describes it correctly. I’m so thankful for those who are here for us.

Conversations with Kaitlyn in the hospital made each day better, meaningful and full of surprises.  In between all the sobering reminders of why we were in the hospital, Kaitlyn was so Kaitlyn. She’s consistently optimistic, silly, sweet, and incredibly caring. She had these statements that seemingly came out of nowhere but were exactly what I needed to hear. I wrote as many down as I could. Here are a few:

“When there are so many lights, I can’t see.”

“I remember things. And then I don’t. But that’s the Kaitlyn way.”

“I miss being me. But I do like ice chips.”

“Mommy. You need to face the facts.”

“I like rain drops better than rivers.”

"busy people must have different kinds of eyes than us. Cause what matters is to care and people. If they don't know that- they will always be sad- but we aren't sad."

She made videos on my phone, mostly for her doctor.. telling him goofy things she thought he should know.  She also surprised me, and made a video for me, thanking me for being her mom. She was all shaky and the picture is off because she’s holding it funny, but she says the sweetest things.  I still can’t watch that without crying. 

We made it home- the best place for us to be. We have our Kai back. It’s been a giant mix of everything so far. We have had some scary moments in nearly every day, but the good in our days always outnumber the bad. Kaitlyn is finally gaining some weight! She’s tolerating the TPN feedings better than the tube feedings ever went.  We are still hoping to get tube feedings going again in the near future. This isn’t perfect, and she’s still in some pain now, but nothing like before. Her seizures are less often. She’s throwing up again, but less. The moments that she’s awake, she enjoys more because she isn’t in as much pain. She’s more alert when she’s awake, more interactive overall, and she shows me every single day that there are more things to smile at and laugh with, than not. 

 

Kai was worried we would leave the first few days we were all home. He checked on Kaitlyn & I throughout the night, then ended up sleeping in my room.  The first night, he put his nose next to mine and with his dark Kai eyes wide open he said, “Are you really home to stay? For reals?”. He has been extra snuggly, and great with talking things out as they come up. It’s been a few weeks now, and he’s more secure every day.  We don’t have this routine down to the art of ‘normal’ yet, but we are getting there.

There’s something about Kaitlyn’s hands. When they reach for me, it stops whatever I’m thinking or doing and I reach back for her. Since Kaitlyn was a baby, she’s reached for me in this way that makes me feel like I have an answer, even when it’s clear to me, that I don’t.  She folds her hands so sweetly under her cheek when she sleeps. She holds her brother’s hands in such a way that he stops what he’s doing, too. This is one of many ways Kaitlyn stops all of us. She waves to her doctor, even if she’s half asleep. She points to things when her words aren’t quite working. Her hands sometimes look like a younger, smaller version of my own.  I look for me in her sometimes, and then get I stuck thinking it should be the other way around. I’m supposed to be teaching her something, but she teaches me more and more every day. Kaitlyn’s hands look more delicate lately, both in grace and fragility. 

    

We’ve had quite a February. After the placement of the GJ tube, Kaitlyn initially was doing pretty well. I think we had 4 good feeding days and then the pains she had slowly started taking over. Seizures came more clustered together as well. One of her worst seizure days, she had clustered so much we called the ambulance. I talked to Kai about what was happening, and he was worried about Kaitlyn. He watched for the fire truck and ambulance and told me he’d like their autographs, as he stood there with his nose pressed to the window. Everything seemed like it was about to be okay, but when they got there- Kai’s face changed. He was calm, but he looked so scared. His teacher (and my good friend) came and held him, and we went on to Kaiser. Kaitlyn did really well. By the time we got to the hospital, she was waking up and interacting.   We came home and the rest of the night was okay. Kai seemed changed after that when he was home. He seemed more scared that something would happen at any moment. He’d get mad at me if Kaitlyn cried, asking me to do something before she had seizures.

Kaitlyn was having these pains that took over her little body. Watching Kaitlyn hurt is one of the worst experiences in this. I’m helpless in it. I’d turn the feeding off, then back on. I’d hold her, I’d walk away. I’d cry next to her. Nothing seemed to help. She was throwing up less, but still throwing up.  We went back to the hospital (after a week of being home), and with the help and coordination of Kaitlyn’s doctor and the pediatric team there, they admitted her. She had an IV for hydration, and we gave her a break from feedings for a night. She was so much more comfortable.The next evening we started slowly, with just pedialyte through her tube. She was also on a new seizure med, Klonopin. It was working great (no seizures), but it made her so awake she stayed up all night, and talked without stopping. The things she said were hilarious (and slightly embarrassing when she told anyone who entered the room a random fact about her mother), but it was hard to see that she couldn’t slow down. We went from one extreme to another (sleeping all day to being so awake she couldn’t sleep). She didn’t sleep more than 2 hours the night she started pedialyte. She was asleep at 4am, and awake around 6am (if I’m even remembering that right, I was also on no sleep). She kept trying to get up and she’d march into the bathroom. We kept telling her to let us know so we could help. But I also drifted off to sleep, next to her on a little couch. 

I don’t know how to describe any of this right, because I’m coming from this scared mom zone that I don’t want to reach into.. but Kaitlyn somehow tripped on the feeding tubing that was connected to her feeding tube, and the entire feeding tube came out. That image is stuck in my head. Both the expression on Kaitlyn’s face, and of the tube, sitting there- all exposed and out of her. I jumped up and pushed the red button that makes nurses come back in her room. We were all shocked that it happened the way it did. I felt so guilty- I was right there and wasn’t able to prevent Kaitlyn from tripping or prevent the tube from coming out. The nurse had just been in there, and she had been amazing with Kaitlyn throughout the night, and in talking to a half asleep me. She felt awful, but there wasn’t anything she could have done.  The unthinkable keeps happening, and I felt crushed. Mom guilt took over.  There are so many times in this when I want to be angry at someone or something. If only I could blame someone for the hurt and pain Kaitlyn is in.. but I can’t. She’s cared for by so many and everyone who helps her, does so with everything they have. The morning her tube came out, I felt broken and defeated. I wasn’t angry at anyone but myself- and that wasn’t a very productive way to be.

Kaitlyn was transferred to SF by ambulance Monday (Feb 13), and I drove.  She was transferred because the team that can replace the tube was in SF. She was stable the entire time, and very alert still (Kaitlyn on Klonopin). That drive seemed like it took hours. I blasted Lyle Lovett and I cried so hard, it hurt to breathe. That cry helped me make it through the rest of that day though.  It probably wasn’t pretty to see if anyone drove past me, but it was necessary. The benefit of defeat- you only go up from there.

In SF, Kaitlyn was in the same room she had been the week before. They remembered her, were very sweet and comforting with us both, and they had the GJ tube replacement procedure scheduled for that afternoon. We stopped the Klonopin. The procedure went well, but she woke up in a lot of pain.  It felt like something was wrong, but I didn’t know what. I lost my umph when I saw that Kaitlyn seemed to have lost hers. She didn’t have that spark in her eyes like she had before.  Obviously that doesn’t sound very clinical or make any sense.  Something just felt worse, but I didn’t have the words for it. 

Tuesday (Feb. 14) Kaitlyn woke up with a fever. She moaned in pain throughout the night before (does that sentence even make sense?!). The fever didn’t make any sense, and neither did I.  Making sense must be overrated. She wasn’t talking to me, just moaned in pain. I’ve never felt as unsure and scared as I did that day.  X-ray came up and took a picture of her abdomen. Everything looked ok so they weren’t sure why she was so miserable, and why she had a fever. I kept crying, which was very helpful, I’m sure. Usually I make bad jokes to survive the moment we’re stuck in and it gets awkward, but I just cried instead. The more I stared at her, the worse I felt. She had a seizure when we went downstairs for a 2^nd xray. That seizure probably wasn’t the worst seizure she’s ever had, but it felt that way. It seemed to be the last thing I could watch her go through and I melted.  I cried to anyone that was near me, all who seemed to understand what I couldn’t and they helped Kaitlyn. Somehow we made it back up stairs, and the seizure stopped. I had a mini panic mom moment and asked the doctors and nurses not to leave me alone with her. I was scared a seizure like that would return and I was scared I couldn’t handle it. Nothing felt secure. They were all amazing though. They watched Kaitlyn, they gave me breaks, they talked me through all the random things I said. They called in a pediatric surgeon for a consult, just to be sure but the surgeon thankfully wasn’t needed.  She had a CT scan that showed there wasn’t anything to be too concerned with. She had some fluid, but that may or may not cause the issues she had. Kaitlyn’s abdomen got swollen and harder early that day too. Amazingly though, that subsided and she started waking up, talking to me again, and her abdomen got soft by the afternoon. Her fever went down. She was hurting, but it wasn’t nearly as scary. All the sudden, I felt like I could breathe again. And my awkward jokes returned as well. She was on IV antibiotics, IV seizure meds, and then started some IV nutrition as well. She perked up.  I know I’ve said it before, but it’s amazing what can happen in a day. We stayed through Saturday, but the rest of the stay was thankfully relatively uneventful. We worked on getting her feedings back up, and she went off the IV nutrition.  She started taking Ativan regularly for seizure prevention, and it seemed to really help.

When we got home, we tried to settle in to the new feeding schedule, and tried to make a new kind of normal. Kai was so completely cared for and loved while we were gone. He spent nights with his teacher and her sweet family. When we were home together, he felt unsure it would stay that way. I am not always sure how to comfort him.  Nights have been the hardest. He’s had dreams that Kaitlyn is dying.  They wake him up, and he cries. He’s worried she’ll have a seizure at any moment; worried we’ll leave him, and just worried. Kai will say over and over, “well. It’s not okay.” He’s right, it isn’t okay. None of this is.   

One night he curled up in my lap and said, “Mama. Do you ever wish you had just one kid. One Kaitlyn. So you didn’t have to worry about a son? This is too much for you”. I felt like one broken mother, wanting to somehow show him how much I love being his mom, how proud it makes me, how honored I am.  I still have that moment stuck in my head, and it replays in my mind constantly. I’d do anything for him to not wonder the things he wonders or worry like he does. I can’t take his worry away, but I’ll never give up showing him how much I love him.  He asks questions that are well beyond the 7 years he is. Kai’s ability to question is one of the sweetest things I get to witness. He is in counseling, but this week has shown me he needs more. I’m grateful he does talk to me. His questions aren’t always easy to hear, and I certainly don’t have all the right words to respond with. But those Kai moments, are worth more to me than I can explain, no matter how heart wrenching they may feel. Kai sees the world in a way that’s full of intensity, curiosity, and compassion. The way that Kai questions the world around him is incredibly inspiring.

Fast forward to today. Kaitlyn weighs less, my heart weighs more.   Kai is back in his bed after a week of being in mine. Before bed a few nights ago he said, “Mama. What if I can’t handle it? What if I miss you, and it’s like- the middle of the night? Do tornadoes happen in Windsor? Is the sheriff working tonight? Are there earthquakes under water? Did you make cookies? Are peoples eyes like tv's?”… but then he grabbed his Army bear and snuggled under his covers, with his hands wrapped around his bear.  After his dreams about Kaitlyn, and my sadness taking over, we all huddled together every night for a week. But we made it through, they are both back in their beds. There’s more to say about the last few days, but I’m not ready to yet.