It's just hard right now. Eli is stuck in PICU b/c the cvvhd machine (slow continual dialysis) can't go with him to BMT. They used to allow them there. The BMT nurses told me they've had the machines there. But not in a long time. The BMT docs say the dialysis nurses don't want to come on and off the BMT floor to service them. The dialysis folks say the BMT doctors don't want the cvvhd machines in their unit. Who knows. The fact is we're stuck in PICU until Eli can transition to intermittent dialysis or until his kidneys are fully functioning. Either way it'll be awhile. It's like the movie Groundhog Day here. Everyday is the same.
I'm not ungrateful for the miracle of the adenovirus being annihilated and Eli surviving and having no observable organ damage from it. I'm so thankful he's still with us and showing his spunky personality. That's about the only thing that keeps me going up here. But emotionally I feel like I'm dying a slow death.
Outside the world keeps going. Spring came and now summer is imminent. Families are out and about, teenagers are going to prom, children are practically vibrating with excitement that the school year is nearly over (as are their teachers). My friends are taking their kids to minor league baseball games and Disney world and the beach.
I just want my kid back. I just want to take him and big brother to go fly kites at the beach, hunt for shark teeth, go for a hike. I want to take them to a baseball game.
And every night that I go to bed at the Ronald McDonald House, I wish Eli was next to me. Heck, I wish either one of my kids was next to me, or better yet, both. I not-so-secretly love having my kids in my bed (even though one thinks he's too grown now), and Eli has been sleeping with me since he got sick.
I just want my kid back. This is really hard.
Currently Eli is in acute renal failure. I'm not sure when it goes from being acute to chronic, but probably soon-ish. The doctors that we like and trust the most say Eli's kidneys just need more time. How much time? No one knows. More than a few days.
It could be so much worse. Eli is SUCH A CHAMP. God has definitely healed him. But Eli still has so far to go.
I just want to take my kid and go home. I want this all to be behind us.
I was talking to my mom about all this today. She was rather enlightening. Leave it to moms, right? She compared it to the transitional time in labor. When you just can't do it anymore and you beg to home, or be done, as if that's an option. That's precisely when things start changing, the end is sort of in sight (after a pretty giant hurdle) and so much of the labor is behind you. In the case of Eli in renal failure and waiting for his cells to grow...I hope she's right. I hope we've done the heaviest lifting and we're on our way to a new and healthier life. Theoretically in a few more weeks we should know the outcome of Eli's transplant. Which cells engrafted, if it's permanent, if the old rogue cells were sufficiently killed off. And in a few more weeks hopefully Eli's kidneys will be more functional, and/or he will have transitioned to intermittent dialysis. But like in transitional labor, I just can't do it anymore. I want to take my kid and go home. I don't have anymore weeks in me.
On one hand I think I should probably just take my anti anxiety med. I don't take it regularly. I got it to help me through the hard parts of this process. It would definitely help presently. On the other hand, what I know about myself is I process things by feeling my way through them. Remember "Going on a bear hunt" from preschool? "Can't go over it, can't go around it, gotta go through it." It's like that for me in life. So I am cautious about anti anxiety meds because I have to fully go through something to get past it and move on. I do usually take it on big days (like Eli's birthday) so I don't turn into crazy anxiety lady and ruin everyone's fun. I'm great at getting uptight and spazzy, so it's helpful.
But I think I'll be okay if I take it now, just so I can get through the next few days and weeks. I don't think there's anything wrong with taking medication and I'm not trying to prove anything to myself or anyone else. I just want to make the best choice for my health. Which is why I haven't had any alcoholic beverages in a few weeks. I don't think it's healthy for me to put wine on top of a depressive state. So I haven't. I have tried to eat a more plant based diet, as that affects my mood positively. Sleep has been hard to come by, even on the nights I get to sleep in a bed. I've walked to and from the hospital to the Ronald McDonald House a bunch instead of driving or taking the shuttle. It's a little over a mile. It's a pretty nice walk. So I think doing those things are helpful, and the next right choice is a pharmaceutical.
My family and friends have been great. Better than great. I have had more friends, old and new, reach out to me in love than I would ever have expected. They've been so kind, tender, encouraging. My family has been loved so well by so many people. It's humbling. I don't know that in five lifetimes I could return or pass along all the love we have received, but I sure will try.
Which leads me back to being D-O-N-E. I want to take my kid and go home.
We just have to get past this hard part. And the only way out is through.
