Not-So-Happy Zane

The last few days have been rough for Zane. The adjustment to his seizure meds has done a real number on him. Since Thursday, he’s mostly slept. When he’s awake, he is irritable, crying, and fussy. And when he gets this way, he doesn’t want to be moved or touched. There have only been a couple of occasions where he’s attempted to smile and be cheerful, but they’ve been pretty short-lived.

The neurologist said he’d experience more lethargy and side effects for four days or so after the medication change. But it doesn’t look like this new behavior is going to go away any time soon. She told me she could prescribe vitamin B6 if he has increased side effects, so I’ll call her when the office opens tomorrow to see about that.

To top it off, it appears he’s getting a cold.

The boy is absolutely miserable. And it breaks my heart to see him this way. My plan is to keep him out of school tomorrow and let him rest.

I want my happy Zane back. There are places to go, things to do. He can’t do any of them if he’s not feeling well.

The New Neuro and an Update

Let me begin by saying, Zane’s new neurologist is AWESOME. Zane saw her for the first time today, and she created a new seizure management plan that I actually like. In a nutshell, it cuts out one of his existing meds—which I’m always in favor of. Over the next eight days, he will be weaned from the Zonegran J Plus, she explained her reasoning to me, which I always appreciate. She’s young, bubbly, and has an incredible bedside manner. She was so good with Zane—speaking to him, not just to me like he was a fixture in the room. Love it! She has back-up plans in place in case her current ideas don’t fully control his seizures.

Zane also had his annual IEP meeting today. One hour. It only lasted one hour, which is an absolute record. Normally, they last 2-3. It was the most painless IEP to date. No arguments over goals, no skyrocketing blood pressure, no debate. Plus, the team believes Zane is doing so well in the general ed. classroom that they’re increasing his hours there. Yeah for Zane!

The IEP may not have made my blood pressure rise, but other things did. Zane was denied nursing respite this week. When the news was given to me, I was stunned into silence. When I recouped, I had to ask why? Apparently, he’s too healthy. Yes, you read that right. Too healthy. Nevermind Trisomy 18 carries with it an innate medical fragility or the fact that he has a seizure disorder or that he’s tube fed. Nope. Didn’t qualify. Well, if you know me, I almost always get my way to some degree or another. It must be the paralegal in me (yes, I have my paralegal cert, love to write appeals, and research things until my eyes are red). I made enough of an uproar—enough of an argument—they told me today that they found a loophole to get him nursing respite. Yeah me!

I’ve also been dealing with annoying, pain in the @#$ Apria Healthcare. They’ve been sending bills to me since early summer about an item they failed to get pre-authorization for. Now they are trying to pass the cost of their incompetence on to me. I’ve sent them three letters from his insurance company, stating we legally owe them nothing. I’ve called them to explain why they are in error (only to have the customer service rep hang up on me). Yet they continue to hound me. So…I filed a complaint against them with the BBB, and—thanks to my friend, Don—sent the insurance letter to them…again…accompanied by a “drop dead” letter, which tells them they are legally obligated to stop bothering me. We’ll see what happens.

So that’s it for now. Some good news, some not so good news. But overall, things are looking up for Zane.

Artsy Zane

It’s been a hard year in many ways. In all honesty, life has not been too kind to me (or to Zane) lately. In fact, I had a minor breakdown on Facebook this morning after another piece of bad news came my way. Thankfully, my beautiful friends came to the rescue and delivered pep talks and warm cyber hugs. Thanks to all of you. You all make me very teary--in a good way. 

That said, I decided that despite all the negative things being pushed at me in 2013, I am going to rally (much like Zane does through the hard times) and attempt to stay positive.

So here is my happy post to lead us all into the weekend: Artsy pictures of my beautiful youngest, Zane. (I’d post artsy pictures of my oldest, too, but the no blog and Facebook picture rule is still very much in effect).

Enjoy!

Justin snapped a picture of Zane, then played around with photo editing software to doctor the pic.

Justin and I drew our own versions of Zane.

One of Zane's fellow first graders drew this one for him. I absolutely love the likeness, the happiness, and the acceptance. 

Just adding these to the blog makes me feel happier! I love my boys.

The New GI

Zane eating at the table.

It’s been a while. I know. Thankfully, things have been relatively stable for Zane for the past month—aside from his seizure activity, that is.

Today, though, Zane saw a new gastroenterologist. I liked her. A lot. She reviewed Zane’s medical records and found that he’s doing quite well, as far as his GI issues go. So she wants to try some new things with him.

For quite some time now, Zane has been taking a predigested pediatric formula. There have been many wonderful things about it (Zane hasn’t had any problems with his GI tract since October of last year). But there are also drawbacks—details I won’t go into here. So she’s given me a new formula to try for the next day or so. If he tolerates it well, we’ll make the switch. Apparently, it tastes (and smells—Justin will appreciate this) much better than the old formula.

She has a long-term plan for him, but wants to change one thing at a time. Once we establish his formula, she wants to back off on his Prevacid intake in the hope of completely weaning him from the medication. There are negative side effects associated with its prolonged use, so I’m in favor of trying. I’m not as optimistic about the outcome as she is.

In addition to all of that, she wants the following to happen (some immediately, some down the line):

• Increasing his water intake from 8 oz a day to 12.
• Zane has been eating with us at the dinner table for the past week or so (something he's not really done in the past), taking about 1 oz of pureed food by mouth and loving it. She wants him to eat orally twice per day—in time.
• She also talked of replacing his Nutriport button (if I could be in love with a g-tube button, it would be with this one) to a Mic-Key to reduce his granulation tissue and leakage. Mom’s not going to let this one happen without a fight.
• Have him see her nutritionist some time next month.

So that’s it in a GI nutshell. Zane’s seizure activity has been…not good. He has a neurology appointment next week. If I’m not too busy, I’ll update then.