Monday, April 16, 2012

Making the Best of It

We're still plugging along. Jackson has fully recovered from his drug reaction, and it's easy to look at him and convince myself he was never covered in welts and fever and angry purple streaks that scared me half to death. Interviews are rolling in for Mike, and we are hopeful that something will come together by the end of the week. Cross your crossables!

More good news is that our CHIP application was approved in under half the expected time and we know that Jackson will not have to endure another lapse in health coverage. I actually couldn't believe it when the letter came and made Mike read it with me about four times to be sure I was getting it right.

We have done our best not to spend the time in limbo idly. We went to visit my family in Nebraska for Easter- a rare treat, since we're usually lucky to see them once a year. Then we trekked down to Austin to visit Mike's family, and now it's back to domestic chores and organizing our benefit for next month. I'm still equal parts horrified that nobody will show up and that I will drop the ball and be unprepared. Something about experience being the best teacher and all that, right?

The proof that we've learned and grown in the past few years is this: we're still here! We aren't madly depressed or cowering in a corner waiting for the sky to fall. This is another dip in the roller coaster, but it seems we know that the track will always go back up. Maybe I am learning to deal with the ebb and flow of the fates just a hair better. Stranger things have happened.

Sunday, April 1, 2012

Our Friend Murphy

Murphy's Law. Or tempting fate, the Laws of Physics, or whatever you want to call it.

Man did we work hard to get off of Government aid and get our own health insurance. Our singular focus over the past two years has been to get ourselves in shape and be financially independent and responsible. When Mike had insurance, everything was very calm, no IV's or hospitalizations, 6 months without even oral antibiotics. And through the forethought and generosity of his grandmother, we also came to have an emergency savings fund in place. A little golden light shone down and it was like we were almost Responsible Adults.

When Mike lost his job I immediately began looking into every option to keep Jackson covered that I could find. Our social worker recommended we apply for Medicaid, and so we went down to speak with the financial counselors at the hospital to help us do just that. I had every piece of documentation they might ever need, an already completed application, extra copies of everything...I was well prepared. Imagine my disappointment when I was told that having money in a savings account disqualified Jackson from eligibility for care. If you have more than $2,000 to your name, you're automatically out. Which to me seems absurd, $2,000 would be wiped out in one ER visit. And if that were everything we had to our name, we would then be unemployed, penniless, and without health coverage for our sick kid. My face was hot and red and I couldn't make eye contact with the financial counselor. I really wanted to yell about how stupid it is we should be punished for doing our best to be responsible. That small savings account is what we're living off of. It wouldn't buy two months of COBRA coverage, but it disqualifies us from assistance. I wanted to punch something.

Allergy-1On the other hand, I feel like a complete ass for being such a whiner about it. And it's odd to be in a place where I really do WANT to complain about it. Usually I'm pretty good about just moving on and finding other ways to do whatever needs to be done, but I just wanted to stand there and have a temper tantrum. "But we did everything right! We did everything we were supposed to do when we could and now we need help and you won't give it to us!" Maybe I even wanted to yell, "That's not fair!" But I'm lucky enough that my mom taught me it doesn't matter what's fair, it matters what is. Work with what you've got. So as our (and by our, I mean Jackson's, we'll go without until Mike gets a new job) health care hangs in the balance, our social worker assures me we've got other options to look at, and I am applying for them all at the moment. I attempted to shake off my perceived injustice and move on.

This was Friday. The next morning- yesterday- at breakfast, I lifted Jackson's jammies up to put his antibiotic into his G Button and noticed what appeared to be three bug bites on his knee. In the time it took me to wonder aloud what had caused them, two more appeared. By the time I had washed off the syringe the antibiotic was in, another half dozen had popped up and I was confusedly trying to wrap my head around the lack of bugs present in this phenomenon. Minutes ticked by and both of his legs became covered in hives, steadily creeping along his body.

Now I've always said, we're the people who are in a good position for bad things to happen, and here's a classic case. Remember how I've mentioned that Mike's folks are in medicine? Well, his mom, who lives 2 miles from us, just happens to be a practically world famous allergist. Dr Grandma does fabulous house calls. She confirmed that there were no mysterious invisible bugs, and in accordance with my fears and suspicions, this is most likely a reaction to his antibiotics. We got some Children's Benadryl and headed toward nap time with some trepidation.

Allergy-3Before I go on- why am I so bothered by a possible antibiotic sensitivity? Here's my not perfect, but not totally unreasonable train of thought. Mike is pretty darn allergic to MANY antibiotics. My mom, and I *think* both of my brothers are allergic to penicillin. It's fairly likely Jackson will have some sensitivities. Why does that bother me? Because I feel like it's eliminating possible treatment options for future respiratory infections. I know many CFers develop sensitivities or resistance to antibiotics through the course of repeated exposure, but I was hoping we'd have a few more years of the old tried and true Bactrim doing the trick before it was out of the running. I worry that if he has wide spectrum allergies like Mike than moving to less common antibiotics to treat him now will eliminate many options for him down the road. I know that this isn't exactly the case, but it still sticks in my craw and has apparently made me pretty cranky about the whole thing.

Moving on- When Jackson woke up from his nap, his entire neck and chest was one giant, angry, red weal. His torso was whelping up in spots now, too, as well as tender places like armpits, behind his ears, and behind his knees- and it was starting to itch some, although in general he was pretty happy. We repeated his Benadryl dose and waited a little longer. It just kept getting worse. By bed time his entire torso was one hot, tender whelp. a red line had crept up to his chin. He was turning solid red from the bottom up, like a thermometer about to burst. He had full body shivers from the sensations, and would periodically try to scratch every red spot at once, twisting his arms behind his head in a frenzied attempt to relieve the maddening itch. An oatmeal bath made him scream. Topical relievers made him scream. He would fall asleep for a moment, only to be startled awake by the crawling sensation under his skin and scream some more. I was relieved when Mike's mom checked in on us again and came in with bigger guns blazing. After some steroids, a higher dose of Benadryl (under the care of a Dr, not something to try out on your own!), Zantac- which helps the Benadryl be more effective, and three hours of rocking, consoling, and crying, he FINALLY went to sleep.

Allergy-2Mike & I didn't sleep so much. Between taking turns giving meds and just checking to make sure he wasn't getting worse, we maybe split three hours of sleep between us. But lo and behold, this morning my boy isn't a 28 pound hive. Woo!! I was exceedingly happy to see that about 75% of the hives were gone, and the mass redness from the neck down had returned to a normal color and texture. A closer inspection under his onesie revealed some nasty looking bruising across his back, where the previously swollen skin cells had filled with blood. I'm told the fancy word for this bruising is Ecchymosis. (Not petechiae, like I initially called it) He kind of looks like someone threw him down the stairs. His legs are having a breakout at the moment I type this, but overall it appears his condition is still on the up & up. A long phone call with our nurse is in order at the open of business in the morning, then we'll sort out where to go with all of this.

I feel better this morning than I did last night about all of it, but I'm still nonplussed. I'm used to respiratory illness. I'm used to digestive problems. But this was new, and not expected, AND I felt completely impotent watching him struggle for hours and being completely unable to relieve his discomfort. And on top of that, I was having a mental tantrum of "Of COURSE this happens when our insurance runs out! The whole time we had it he was healthy and everything was calm, of COURSE the shit hits the fan now!!" Well, excuse the voices in my head for their profanity, if you will. And understand that I know very well that this is NOT the shit hitting the fan. In a global CF sense, this is a *blip*. It's just inconvenient, and ill timed. But frankly I don't know anything about Cystic Fibrosis that is well timed or convenient. The past two days are just a reminder that we should appreciate the health and health care we've had, and keep fighting and working for more. What's fair doesn't ever matter, and it's rarely how the game plays out. It's much more important what we do with what we have than what we think we should have had to start with.



***Please excuse my less than stellar cell phone pics. It's obviously time for me to start using a real camera again.