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 2nd 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.
