Wednesday, March 23, 2016

Kidney News 2K16

When I started this blog in 2010, it was focused on having a baby. For the past six years I've written about the ups and downs of infertility and even a surprise pregnancy. But peppered within those family-centered writings have been notes of importance about my health. My children are the most important thing in the world to me. I adore them, and if I'd known it would happen in advance, I'd still have done it. But that does leave me having to face the fact that my kidneys went to hell in a hand basket. They would have anyway - it's the nature of the disease, and we tried everything we could to stop it. I've spent 6 years wondering "when". When would my kidney function drop so far I needed help? Would I have time to wait for a transplant or would I need dialysis? Finally, some of these questions have answers.

I've always said I just wanted to get my kidney transplant over with, and, while that remains true, there's a whole new set of circumstances to think about when it actually comes down to that time. And it finally has. My latest set of test results show my GFR at 17. Creatinine at 3.2. Which I thought would suck, but I was also ready to just move on. A few weeks ago my nephrologist started me on a medication for blood pressure that he said my make my creatinine jump a little. I was ok with that. Maybe I'd hit 20 GFR and get the ball rolling. But the results were much worse than I though, and, though he didn't say it, worse than my doctor expected. As it stands, I'm waiting for a re-test right now, that I'm pretty sure is to make sure I'm not in acute renal failure.

It's really stressful knowing basically nothing about what's going to happen, but at least I know I have an appointment on 4/11 to discuss it and get the ball rolling. My brother should be able to begin testing quickly. They are already verifying everything with my insurance for my part. I don't know how long it will take from start to finish, and until I get these test results, I don't know if I have a prayer of making it without dialysis.

I honestly don't know how we'll keep paying for things if I have to stop working for more than  8-10 weeks. And so many people on dialysis can't function well enough to work. That's why you get social security disability for ESRD. But that's not enough to pay our bills, and I certainly can't lighten the load by watching kids. I'll be physically unable. So I just pray I can keep working until transplant, take 10 weeks off, then work from home for a bit and then come back.

I'm looking at all the things I'll have to go through, hoping I'll pass the tests. And then the things they do during surgery. Ports in your neck, catheters in your pee hole, another huge, open surgery scar. I can't pick up my kids, and they can't lay on me for a few weeks. I'll have to be away from them for 7-10 days in the hospital. People bothering me all day and all night. I was supposed to stay with my parents for a bit when I came home because Andy will be working so much, and they could pick the kids up from school and make sure they don't jump on me, but I'd still get to be with them, but now their house won't be done. I hope they realize I will literally be of 0 help except to hand out cuddles for at least two weeks.

The good news is, if we get it done soon, it'll be over, and this whole mess will be in the past, at least for a while. Maybe by the next time I need a new kidney they'll be artificial. I'm hoping not to need as many hospital stays as my friend did after hers for various infections. I expect some hiccups, but I pray that for the most part it will be healthy momma and her babies doing all the things I 've been wanting to do. And Andy. Haha. All I can do for now is pray.

Tuesday, March 8, 2016

Time Passes By

Well, I guess it's been a while since I wrote here. Honestly the lack of gmail at work is a pain in the ass because I can't send pictures to this computer any other way. This post will be picture-free for now, but full of updates. Me first, because why not?

My health suuuucks. My hematocrit and hemoglobin and red blood cell count are lower. My creatinine is back up to 2.74, and I'm so tired I cannot handle it. I have been late to work a lot  and going to sleep early. I saw my nephrologist on Monday. Andy was telling him how hard it is on me to be in this constant holding pattern of "when are my kidneys going to fail" and he said pretty much... yep, it sucks, and I can't help you. We're trying a new medication that might.. help.. sort of? Except it might make my creatinine go up? Who knows. Seriously. I don't. He did say if we wanted to speed it up we could have another baby, but he wasn't serious. He just meant that short of doing something really damaging, there's nothing we can do but wait. Awesome.

Littlest is still the sweetest. He keeps getting fevers and he's super skinny. He's still not talking, but he is improving in every other way. Climbing on everything, babbling like crazy... going through books and not eating them. He's figured out that he's supposed to use the railing to come down the stairs, but he can't reach it yet so he just stands there and tries. My sweetie boy. He's still having trouble with table food, but we keep trying, and he finally today took a sippy cup. The kind that looks like a bottle but.. it's a sippy, dammit. One of his therapists suggested private speech therapy, but I found out our insurance won't cover a delay, only something directly tied to a disorder. But the neurologist was very clear that he didn't think Andrew fit the criteria for Autism. Though he did think we should talk with the autism clinic to be sure. I think what I want to do is see the geneticist and get some tests done, and if they don't show anything, follow up with the Autism clinic. He needs therapy, but I don't want to put a label on him that he doesn't have? If he does, then it's whatever because he's the same kid I love to bits no matter what label he has. I just want to do whatever is right FOR HIM. His body type is a little concerning to me as far as genetic things as well. He is gaining weight and growing, but he's incredibly skinny for his height. People have commented on it, and I mean I can see every vertebrae in his spine, every rib. I can see all the muscles in his legs. He eats and drinks a lot. So I just want to rule all of that out before we go in the direction of something that can vary by opinion. With genetic issues, he either has it or he doesn't. With Autism it's kind of subjective. When it gets closer to Thanksgiving he'll be starting a prep program like Evie, though, and I think that will be good for him. He's still my snuggle bunny. He just wants me to hold him all the time and tickle him and kiss him. He HATES baths. He likes water, like in pools? HATES baths. I am starting to wonder if it's the loud sound of the faucet, but I will have to do some tests to see. He loves loves loves being outside. He just wants to run and climb and feel the wind in his hair. He seriously makes the CUTEST faces when he's outside. He likes going to the store with me or Andy.. just any sort of time out of the house. Still loves Chuggington, still sleeps like an angel at night. His naps are getting kind of crappy, but he likes being in his crib either way. He's so smart and loves to figure out how things work. Which is cool except when you combine it with his love for the outdoors, you have him figuring out how to open doors to the outside. No good, friends. He's home with his daddy a lot these days. Sometimes my parents watch him, and I'm home Thursday-Sunday. I'm working Thurs and Fri but that doesn't mean I can't cuddle the crap out of him. It's nice that he gets a lot of time with each of us. We all just love him so much!

Evie is... Evie. And that's not a bad thing. She's just such an individual! She cracks me up all the time. She has me in tears regularly. She's still not potty trained because she's just so dang stubborn. It's frustrating, but we'll get there. She's so incredibly smart. She knows her letters and letter sounds, and she's built those foundations for reading and I can't wait to do that with her. Her vocabulary is incredible. She randomly uses words like "Catastrophe" and "stunning" properly in a sentence. I cannot wrap my brain around how smart she is. And stubborn. Did I mention stubborn? She wants to do things the way she wants to do them and when she wants to do them, and she's very dramatic about things like having to pick up her crayons, or not being allowed to eat a 4th slice of cheese. She loves Paw Patrol and The Lion Guard right now, and she's always pretending to be someone. Or she'll address me by a pup's name or call me Kion. She's hilarious and I LOVE her imagination. For posterity, I have to notate a few of the ridiculous things she's said this week.

*Puts a booger on her upper lip* "Look at my beautiful mustache"!
*Popi asks her if she's pooping "I'll never tell you".

Where does she come up with this?

I swear, I say this all the time, but I'm blessed with the most amazing kids. We'll get to the root of what's up with Andrew, but he'll get there. He's so smart and we just need to get those words out.