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.