Tuesday, March 29, 2011

Not What I Expected

I am not my typical quippy self tonight. It has been a long day, but I know a few of you guys would like some real information so here goes...

Will and Caroline had appointments with Dr. T today.

Will's appointment was fairly routine. His reflexes have slowed, which is actually a good sign that the brain stem is no longer compressed. The bad news is that while the surgery was necessary, it really did not alleviate any of his daily symptoms. He is still fighting the infection in his toe, so tomorrow I get to make an appointment with a surgeon who will need to try something more aggressive, including the possibility of in office surgery and IV antibiotics.

Now for Caroline...The short answer is that yes, she likely has mito. Having seen her last set of labs and the similarities between hers and Will's, I basically knew that was going to be the case. However, the question that remains is do we have to go to Atlanta for testing or can we run some extensive labs that will be compared to Will's that will allow a clinical diagnosis. The insurance company may balk at paying for supplements or treatments if she doesn't have the muscle biopsy, but Dr. T is going to talk with Dr. S in Atlanta to see if he will provide insight.

Dr. T also highly recommended that we revisit Dr. Sharps for Caroline's shoulder that basically dislocates on command. She spent 9 months in physical therapy for the shoulder last year, so we may be facing surgery there.

The most difficult piece of news was that Caroline's lower extremity reflexes are lightning fast while her upper extremity reflexes are normal. While I expected the mito diagnosis, I was totally blindsided by the ordering of the MRI to diagnose a likely brain stem compression.

Regarding Caroline, I knew the Ehlers-Danlos existed, suspected the GI issues, and was certain of the mito. But I figured that we would wait and pray that there was no Chiari issue. No Chiari issue meant no brain stem issue and hopefully a much slower progression of the disease process. The news that Dr. T expects there to be a basilar invagination totally shocked me. If indeed this is true, then Caroline will be headed for the same surgeries as Will has had and may/may not have a similar progression.

Billy is quick to remind me that no one knows anything for certain, and that God is in control of all of this. I recognize that. But the thought that she may have to undergo the same surgeries and some of the same struggles as Will just crushed me this afternoon. To watch one child struggle is insanely difficult. But to be told that a second child will likely head down the same path was totally overwhelming to me. The emotional, physical, financial side of all of this is mind boggling to me. How do we survive a second?

Is this a certainty? No. The MRI is still being scheduled. But I have not known Dr. T to ever be wrong. And when she looked at me and said, "I know one has been incredibly hard. I have no clue how you will manage two." totally rocked my little world.

Wednesday, March 23, 2011

An Accident on the Way to a Happening

I'm truly a klutz. I laugh that my parents named me Nancy because it means "full of grace." Really? Obviously they had a lapse in judgment or they actually named the baby in the OTHER bassinet. :) My mom actually used to tell me that I was an accident on the way to a happening...

On Wednesday nights, I run with a group in Fredericksburg training for the Marine Corps Historic Half Marathon. I'm painfully slow, but I love running and endorphines are worth the pain of climbing stairs the next day. :) So tonight, I showed up to run, and Greg asks me how I am. They kinda weren't expecting me since I was on crutches last week. I explain how the knee is better so I'm gonna try for a few slow miles tonight.

But when we start running, I end up explaining to my friend that I had a problem with my knee due to a cortisone shot that really is routine for me and that I had an MRI on Tuesday but the knee feels better. However, the swinging of my arm is painful, so I have to explain that I dislocated my shoulder when getting out of bed to go to the MRI for my knee, and the shoulder is really tender. And then I realize how utterly ridiculous I sound.

So we continue running, and just before crossing the I95 bridge, there's this huge bang...apparently a truck or its trailer ran into the bridge. From what we can tell, everyone seems fine, but it definitely added excitement to the run.

With weeks like this one, who needs reality tv????

Just Another Day in Paradise

I am breaking my own golden rule to not blog at midnight and not eat M&M's because, really, the sugar makes me cranky and then just adds layers to the already cushioned cushion upon which I sit. But...there are days when a few M&M's and a few minutes of writing are just needed. Tonight, I deem that as one of those times.

So to update...Will is still 14 and Caroline is now 9. Oh, not the update you wanted. Well...here goes...

Will is pretty much the same. He's still fighting this crazy infected toe, and it's the only thing I can find that is keeping him a little off kilter. He's getting fluids pretty much every other day. The L-carnitine is making a huge difference, but he's just not holding more than a couple of days between infusions. Is this progression? I don't know. The stress on his body could be growth, infection, allergic reaction to the pollen, or just overall fatigue.

Caroline is currently a mystery. She no longer writhes on the floor complaining of abdominal pain. However, her hair is...odd. I know it sounds weird, but her hair has become very thin and frail. When I put her hair into a ponytail, you can actually see scalp in the back. And there's little volume. Her hair has always been wispy, but it's just...thin. She's also needing to be awakened out of a deep sleep for school, so there are concerns. I called her GI doc and we will see him on Thursday morning. It could be an absorption issue or an endocrine issue or I could just be crazy. If crazy wins, does this mean I get a vacation at the beach with which to recover my sanity? :)

I went to the pharmacy to pick up medications this evening and received the, "Oh, you don't owe anything" comment. Ha! Oh, but I do. We officially have met the $10,000 out of pocket in medical bills jackpot. I knew that the admission last month at MCV would put us at that magical number, but apparently the claim has been fully processed.

Some days this can be so daunting. But then there are days when you realize that your perspective is forever altered and, to be honest, altered for the better. When faced with the challenges of a chronically ill child, you realize that some things are just so not important. We may not be able to order pizza very often or even go to Carl's, but I can make pizza and spend the evening playing buttons with my family. At the end of the day, when sleep the night before was an enigma and all you want is to get them to bed so you can crawl into your own but you are instead sitting at a computer eating M&M's and trying to help people know how to pray, well, that is when you are grateful for M&M's and for the fact that your family is still intact and you are indeed blessed...The laundry and the cleaning and the schoolwork will wait for tomorrow. Today is indeed a gift.