Update on Konner: Some answers, more tests

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.

Update on Konner: Waiting for an answer

I just got home a little while ago, and was going to write about Konner anyway, but a few of you on Twitter and Facebook have asked, and since it’s such a long story, it makes sense to write it up here rather than dealing with the character limits.

Sandy and Konner

Sandy and Konner

My best friend’s son Konner (my godson) was born with a kidney disease called hydronephrosis hydroureternephrosis. One of his kidneys was irreparably damaged because of this, and the other was starting to fail, too. I guess I never ended up writing about it, but his urologist at Yale, Dr. W, removed the bad kidney last year and said that the remaining kidney should heal and function at normal rate, but that there was a chance that it could begin to fail, too (because of the hydroureternephrosis). Konner seemed to have been recovering fine, and we all — doctors included — thought that he would continue to live a healthy life.

Earlier today, Sandy noticed that one of his testicles was pretty swollen, so she took him to the ER at St. Mary’s (local hospital) to have it checked out. While examining him and doing a catheter, the staff at St. Mary’s found that he has a large cloud of blood in his bladder, and a hernia (on his testicle, I think). They arranged to transfer him to Yale’s children’s hospital, since that’s where his urologist (Dr. Weiss) and other experts are. Admittedly, they don’t have that kind of expertise at St. Mary’s, so even though they said they didn’t know what was going on — whether it’s a UTI or a sign of kidney failure — and that it didn’t look good, I’m hoping that when Dr. Weiss sees him in the morning, things will look less grim. We do not want him to have to go on dialysis and wait for a donor match. We’re all hoping that it’s something much less major.

St. Mary’s did say that the hernia would have to be operated on and that the procedure would be relatively minor, but that they were much more concerned about the blood in his bladder. Sandy told me that when they did the catheter for a sample of his urine, nothing but blood came out, as if a vein had been cut open in someone’s arm or something.

So yeah. We are all pretty much freaked out right now. I had to go home because the visiting hours at Yale were over, but I would give anything to be there with Sandy right now. Luckily, Konner’s dad (Ryan) is awesome, so she isn’t alone.

I hope that Dr. Weiss and the team at Yale can come up with some answers tomorrow, and that those answers are much less scary than kidney failure. My little man has been through so much, and he’s only three. He’s definitely a fighter, though; he was all smiles and giggles while Mike and I were visiting at both St. Mary’s and Yale.

Please keep him in your thoughts. I’ll try to update as soon as I have more to tell, but if they’re still at Yale tomorrow I’ll probably be up there.

No sleep 'til Christmas

It really sucks that Mike works third shift at the most popular store during the holidays. Every year, as we get closer to Christmas, I see him less and less. This year, it’s a little different since we live together, but it still sucks; from here on out, he has no days off until Christmas Eve and Christmas Day. At least he doesn’t have to work Christmas Eve, like he did last year. The year before that, when he gave me my promise ring, I barely saw him until Christmas, either.

Whine.

I know, I know. It won’t kill me; I live with him! But it might kill him. He’s already working longer shifts because of the truck deliveries. Last night, he went in for eight instead of ten. I don’t know what time he got home this morning, but he’s supposed to be out at six. How often that happens — he usually comes home later — depends on how much stuff they have to do. I just hope he doesn’t end up overexhausted.

Tonight we’re going to a wake for Robbie’s — Mike’s brother, my future brother-in-law — grandma. The funeral is tomorrow morning, so Mike is just going to come home from work and then we’ll go. He’s such a good brother.

I’m still not ready for Christmas. Tomorrow I’m making cookies with Noni, Mom, and Lauren, then going out shopping with Sandy. I doubt I’ll be doing any shopping. It’s all going to depend on Mike’s paycheck (since he offered to let me borrow money for gifts), or if I get paid by some miracle this weekend. Christmas is a week away.

It sucks that I might not be able to get anyone gifts until after Christmas — or that I might have to do my shopping completely last minute, gah — but I’m trying not to stress too much about it. I did get gifts for all the kids on my list: Kaylene, Konner, Katarina, Tony, and Ciana. They’re all small gifts, but good ones.

Oh, if only the holidays weren’t so damn stressful. I might actually get a good night of sleep! I remember being a kid and being excited. Now I just can’t wait to get it over with! I’m kidding. The time with my family — and that includes Mike’s side of the family — will be nice. We’re going to have dinner on Christmas Eve with my dad’s side of the family. Then, on Christmas Day, we’re having dinner with his mom’s side of the family, and then dessert at my aunt’s with my mom’s side of the family. I feel accomplished for having figured out how to split up fair time with all of our family.

I’m also taking tons of pictures this year, of everyone. This will be Mike’s and my fifth Christmas. It’s kind of romantic, when I think about it.

Just another Thanksgiving list

As much as I’ve been whining lately, I have a lot to be thankful for.

I have two sweet cats (even though they aren’t so sweet to each other). I have a printer that does print (even though it is mentally challenged), and a laptop, both of which I use to write stories. Which reminds me — I am thankful that I have the ability to put my thoughts and feelings and imagination into words.

I have an awesome sister who is my best friend, and an awesome best friend who is like a sister. I have a beautiful family: my mom, dad, sister, grandparents, aunts, uncles, and cousins. I have a boyfriend who fits me completely.

I also have a mouth, which can taste and chew and eat (pleasepleaseplease let 2:00 tomorrow come quickly)! I have a body that may be diseased, but does allow me — roadblocks and all — to do what I love , and I am so thankful for that.

I have a great group of friends, both online and offline. I have a job that, although it can be stressful, I love, and allows me to work from home, during my own hours. I am so thankful that I don’t have to get up early in the morning, that I can work in my pajamas or sweats, and take as many breaks as I want, so that I can rest when I need to.

I have a beautiful niece and beautiful godchildren.

I have so much good in my life that, when I lump it all together, it far outweighs the bad.

And that is what I’m most thankful for.

What are you thankful for?

An update on Konner

Konner, taken by Sandy 10/21/2009 My godson Konner went for his regular checkup at Yale hospital this morning, and his doctor said that what was his good kidney is now starting to fail as well. He has to go for a VCUG in January, and sometime in the spring will be getting his bad kidney removed.

His doctor told Sandy that he will either have to go on dialysis or get a transplant. He’s been put on a donor list, and both his parents have been tested to see if they are a match. They aren’t. Sandy can’t test Kaylene because it’s not entirely her decision to do so (Kaylene and Konner have different fathers), and Ryan can’t test Kayden (his daughter) for the same reasons. After the VCUG, I’m going to get swabbed to see if I’m a match, and Sandy is asking everyone else she knows to consider it as well.

Dr. W (Konner’s doctor) said that the kidney removal is a high risk surgery. Konner will turn two on the 27th of November. So far, he has proven to be our little fighter and I have to keep faith that he will come out of this just fine, too. Dr. W said that usually once a bad kidney is removed, the other kidney will start to recover. Hopefully it does and we find a match very soon. I don’t want my little man to suffer any more than he already has. Sandy said that he has no idea what’s going on and that he is in no pain, which is great.

Please keep your fingers crossed.