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.