Tag Archives: konner

An update on Konner: A diagnosis (finally)

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Shortly after I posted my last update on Konner, I got a slew of texts from Sandy with, finally, some answers. It’s been hard for me to do any writing here at all, so I apologize for how late this is.

Konner did have that post-strep glomerulonephritis disease. (I’m not sure if I wrote about it, but that’s what they were thinking when they originally sent him home from Yale.) Basically, it’s a disease that kids get sometimes after having strep throat. It attacks the kidneys, and since our baby only has one kidney, he was in all kinds of trouble. His C3 levels are back to normal, and are actually the highest they’ve been since he was born. Because of the kidney disease he was born with, Sandy couldn’t potty train him completely (even though she did try a few times and he was actually doing okay before he stopped being able to produce urine). However, because of all of these things together, a large amount of ecoli grew in his urine over a period of time, which caused the complications that led Sandy to take him to Yale again (vomiting, diarrhea, swelling in his feet, inability to urinate, etc). After putting him on some ammoxicillin, the amount of ecoli in his urine has gone down.

Konner had six interns working on his case around the clock, and after sixteen hours straight, they put all of the pieces together and figured it out. (This seriously sounds like a crazy episode of HOUSE or Grey’s Anatomy. Unfortunately for Konner and Sandy, it was all very real.)

Konner is now home and, as far as I know, he’s steadily recovering.

We are still doing the Kidney Walk. Please donate if you can. Click here to make a donation to the National Kidney Foundation. Your donation will help me make my fundraising goal for the walk, so every little bit helps! I am trying to raise $200, and so far have raised $10 (which was my donation). All donations go to research, which will help Konner and all of the other people who have kidney diseases.

Thank you so much for your help and your support throughout these last few months! I’ll keep you all posted.

Update on Konner: A medical mystery

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UPDATE: Edited for corrections. Sorry for the mistakes, San! xoxo

As shitty as I feel, I can’t help but wonder about a certain three-year-old in my life. Konner has been at Yale for a few days, and is being discharged this afternoon, but the road ahead is even more uncertain than it was before.

Sandy took him to the ER at Yale a few days ago because he wasn’t urinating again, and his feet were too swollen for shoes. (Me and my little guy are having a ball lately. Sigh.) They ran a whole slew of bloodwork related to his kidney, and determined that the problem is not at all kidney-related. They admitted that they’re baffled.

Yesterday, Konner wasn’t even producing urine. They began to wonder if his problems are neurological, if the nerve endings in his bladder are dead. They decided to order a CAT-SCAN, MRI, and spinal tap.

Just a few minutes ago, I got a text from Sandy saying that Konner began urinating again, all on his own, and Yale is discharging him this afternoon. He’ll be going for checkups twice a week. They’re back to square one, it seems; the MRI and CAT-SCAN came back fine, so now they don’t have any “leads” at all.

This little guy is a fighter. He doesn’t seem to be uncomfortable, ever, but you know that his medical issues have got to be uncomfortable. He takes it all in stride, and just continues being who he is: a happy little boy. It’s astonishing, the amount of strength this kid has.

I am glad to see him coming home, but frustrated because we don’t know what’s wrong. I know, to a certain extent, how Sandy feels, because I’m still considered a medical mystery, myself. We have an idea of what the problem is, but don’t know what exactly. And if you don’t know what the problem is, you can’t treat it or solve it.

I know Konner is not my son, so I could never truly know what this is like for Sandy, but I do get it. I hope they get some answers soon.

For a quickie post, this thing has a lot of tags

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Is this week over yet?! I’m glad tomorrow is Wednesday and all, but it needs to be Friday. There is a bottle of alcohol with my name on it. (I haven’t yet decided whether that bottle is whiskey or vodka.)

My goal tonight is to get my ass in bed early, but I really wanted to stop in here and say hi. I feel kind of bad that I’ve been paying more attention to Freaking Bookworm lately. (More on that soon! My dreams are coming true!) If you’ll excuse my laziness, here is an update… in bullets!

  • I had allergy testing done yesterday. It turns out that the crazy, all-over itching probably has more to do with my cat than the Mystery Autoimmune Disease. I am allergic to everything – including my cat — except dogs. It fucking figures that I’m a cat person and am allergic to cats, and am not a dog person but don’t have a problem with them. I actually had no idea that I was allergic to my baby. The proof is in the weal that is still on my arm. The biggest weals are ragweed and birch tree, though.
  • I attempted Jillian Michaels’s 30 Day Shred: Level 1 last night with Sandy, and discovered that it is definitely not for people with joint pain. It’s too fast paced, too intense, and today I am paying the price in all of my muscles and joints. I’m gonna stick to crunches from here on out, and try to go for a walk every day. I’ve been staying away from garbage snacks, though. Apple cinnamon rice cakes are my crack.
  • I’m kind of afraid that I can’t hold a full-time job. My symptoms are affecting me more than I thought they would when I signed my contract. The Inflammatory Bowel Syndrome, fatigue, and pain are kicking my ass. Right now I struggle to get through those eight hours, and by the time I get home I’m exhausted. I’ve been putting whatever energy I have left into Freaking Bookworm, and then collapsing into bed. I can absolutely not afford to go to bed at midnight and get up at six in the morning anymore. Today I came home, slathered myself in Icy Hot, popped a Tramadol, and lay in bed reading The Girl with the Dragon Tattoo for hours.
  • Sandy is organizing a team for a kidney walk in honor of her little guy, Konner. The name is Team Konner. If you can, please donate to Team Konner. If we are Facebook friends, you can contribute to my fundraising goal, but either way, the donations go to the Kidney Foundation for research. I thank you in advance.

That’s really it, for now. I do have news on the other thing, but basically it’s just a surgery date; we don’t know anything new in terms of how bad it is. I’m still waiting until I know for sure that all of my family members are up to date before I go talking about it on the internet. Thank you all for your understanding and support.

I hope you are all well. I tried to play catchup on Twitter today. I miss you all!

PS: Go check out my Freaking Book Club! We just finished Nana volume 1, and are now reading The Almost Moon by Alice Sebold. It’s free and it’s fun! (At least, I’m having fun!)

Update on Konner: Still not sure what's going on

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I just talked to Sandy now. (If you’re just getting caught up, my godson was transferred by ambulance to Yale last night from St. Mary’s, and this afternoon the team at Yale finally found that Konner’s iron levels were low after tons of tests. Since this afternoon, Konner’s iron levels have risen. They’re not sure why his iron was low in the first place. They’ve also done a culture to check for infection, and there is no infection at this time. He doesn’t seem to be able to urinate, but they’re thinking that St. Mary’s botched the catheter they put in last night, which would explain the cloud of blood in his bladder (and would explain why he isn’t peeing). They might have to catheter him again, though, because he isn’t peeing on his own.

Also, his scrotum is black and blue, which could be because of the hernia, but they’re not sure. So basically, we’re back at square one, though we do know that he isn’t fighting an infection and isn’t losing his remaining kidney.

It’s frustrating, and we’re all worried and confused. When I hung up with Sandy, she was leaving for a little while to get something to eat. She’s doing okay (aside from being worried and confused and frustrated). I don’t know if we’ll find anything else out tonight. It’s looking like they’re going to be there for a while, though.

I’ll keep you guys posted as I get more news.

Update on Konner: Some answers, more tests

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Finally, some news! And, it’s relatively good (or at least better than a diagnosis of kidney failure)!

After tons of tests, the team at Yale has determined that Konner is anemic and has protein in his urine. They determined that the kidney function is good, but are still uncertain as to why there is a cloud of blood in his bladder, and why it’s gotten bigger. However, he is showing no signs of kidney failure. They are thinking that he might have an autoimmune disease, and are doing blood tests to figure out which one, if any.

Sandy also told me that she, Ryan, and Konner are probably going to be at Yale for at least another couple of days. I asked about treatment, and she said they are continuing the course of antibiotics every four hours, and are putting him on an iron-rich diet for the anemia.

I am relieved beyond words. I hate that my little man might have an autoimmune disease, because hi! I know how much of a pain in the ass they can be, but am so, so glad that our worst fears have been ruled out. Yale has, once again, proved to be amazing.

I think the not knowing was driving us all crazy. My regular readers know that I am horribly impatient, and that not knowing is pretty much my Achilles’ heel. Of course, I cannot even imagine what it has been like for Sandy and Ryan, but I know all too well how frustrating it is to not have answers. Now that we are on a path toward getting more answers, and now that a treatment plan is in place, I think we are all mutually relieved.

Thank you all so much for your positive thoughts and prayers. I got all of this news via texts from Sandy, so I will be sure to pass on your messages as soon as I talk to her on the phone. Please continue to keep Konner in your thoughts and prayers.