They Call it Square 1....

Hey......Guess where I am....The PICU!! After our Christmas dinner was cut short I ended up bringing her to the ER. And what's scarier, I was forced to call 911 & they take you to the nearest hospital. She's been here before, they kinda know her but honestly not as well as the other place. It's not their fault, no harm done. I'm subconsciously "trained" to notice things that are out of the ordinary. And while I hear quite often "you know your baby best" there's still not enough training in the world that will keep you calm while on the phone with a medic. I was cool though. Amidst the circumstances I knew I couldn't blow my top while she was in distress. With the phone balanced between my left ear & shoulder, one hand adjusting the pulse ox probe to get a SAT, ordering my niece around & the other hand shaking her for a response, the fear was setting in. All the while reporting to the EMT what had just happened. I reported her being febrile of a 105 axillary &  heartrate of 240 ish...I was screaming on the inside & keeping a level head on the outside. I mean, what was screaming ouloud gonna do?? I like productivity, getting things done, ya know, cry later on my own time. Right now, every second counted and I made a conscious effort to see that through. So it's the usual....dehydration, rhinovirus, enterovirus & a possible infection.  Looks like I'll be ringing in the New Year at a bedside. Although it's not the best place to be, as long as we're together it's all.....ALL that matters to me. I could care less about being anywhere else in the world. Right here is what matters, it's what counts.

The first 24 hours are probably the hardest to cope with. Waiting for a change or improvement in labs can seem like an eternity. The fear within you grows & taunts your dreams & thoughts. It wraps you in itself taking advantage of your vulnerability. The flutters in your stomach outweigh the hunger you should be feeling considering practically half a day has passed & you still haven't eaten. The sleepless nights & dried eyes become part of you. Sitting at a bedside watching the monitors as the bells scare the crap out of you......Being pulled away by your family begging you to go home, eat, sleep & change clothes because it's been 3 days. I can't tell you just how many of those nights I've encountered. I know there's a rainbow at the end of each tunnel. We'll be back home in no time watching Sesame Street & playing Pat-a-Cake. Cuddling with a book after a warm bath & fresh PJ's. That's my rainbow. It's bright rays of color are there, waiting for us. Just when we make great progress we end up a few steps back to square 1. The hospital stays really set her back but I'm trusting in Him that we'll get back on track....Where we left off.

Rarely do I give myself the chance to wallow in self pity, seriously what does that help??  Remember...Productivity! However that humanistic side of us kicks in the floodgates of tears, pity, anger & hostility become the forefront. Some time ago, someone told me that my baby can feel my pain. So because she's already going through it I try to find the joy in my heart when I'm in her presence. Finding a smile in the midst of pain & hurt is like riffling through a pile of laundry for that favorite blouse. I can't let this distraction dictate my faith. Day 2 is over, talk to you soon....:)

Defeat is Such a Dirty Word....

Greetings friends, family & strangers....It's been a month since my last post & of course when I'm away for long stretches at a time you know life has bombarded me. Haley Jean & I are doing wonderful! We've had a couple quick hospital visits within 2 weeks apart due to unexplained febrile spikes. Since trying to wean off one of many meds we had issues with withdrawls. She became agitated, sleep-less & very febrile. Labs, cultures, fluids & antibiotics drew one conclusion: Withdrawls. The week or so of these spells were rather difficult more so for myself in terms of her restless nights & my inability to sooth her. All she wanted was to lay in my arms....for hours! Whewwwwww....Working on maybe a few hours of sleep is definately leaving a mark. If one more person asks me...."Hey, are you alright? Ya look tired"..I'll probably scream..Haha!! I'm real happy we were able to resolve it. Now she's back to her vibrant & bubbly self :)

A year ago this week Haley Jean had severe dehydration & became septic. It attacked her lungs & she needed to be intubated a few days & we spent 16 days in the NICU. Got home just days before Christmas. Having her home for the holiday & my Birthday were THE BEST GIFTS I've ever received in my existence. Looking back on what's happened in the past opens up doors of fear bad thoughts of repetition. I find myself staring at her for minutes at a time. I become entranced in my thinking, in my spirit & mind in an attempt to stay a few steps ahead to avoid history repeating itself. While she's been dehydrated before, I know now what to look for & so I watch.....I hover. Keeping her lungs "dry" with diuretics & lasix are equally, if not more, important than keeping her body hydrated. It's a very....VERY thin line. When she trips, she falls & the threshold of her illness progressing is quite short. I've utilized those scary times as tools in my toolbelt. I've learned to listen with a stethascope to check for clarity in the lungs & how to measure her heart rate manually....I keep discharge papers, clinic follow-up summaries & notes of past visits filed away in hopes of knowing & understanding what's happened, how to fix it & how to avoid things happening in the future. Just when I thought I've got a handle on it, something else jumps up & catches me off guard. While defeat isn't an option, it's certainly an ugly feeling. Defeat.....That word & I have a serious love/hate relationship. Although I don't welcome it's presence, I don't cater to it either. It think that's what makes mother's [people] strong, it's that feeling that challenges you to the core & you can choose to let it beat you or rail against it. By shutting out the doubting chatters that haunt you at night, taking one day at a time & live in the now is how I chose to stand against it. You learn as life happens. You deal & move on...Don't dwell on it.

There's not a day that passes that I don't pray & ask for strength, guidance & leadership. In my own struggles I find the time & words to Thank Him in advance for vision, discernment & good health for my daughter. I must be doing something right :)

On another note...NBC's Grey's Anatomy aired their winter finale episode about a couple who's baby is suspected of having OI. Unfortuntatley many of my OI chums weren't doing a Dominique Dawes over the portrayal of it...OI is a sensitive subject for those who live with it whether it's the person themselves or a relative, it's not something people take lightly when portraying it's existence. Many felt there was no compassion from the physician regarding the diagnosis of the ultrasound, not to mention the lack of optimism of prognosis. From my personal experience with doctors, they aren't trained to be compassionate first & stern the next. I don't think it's intentional, they are trained to give you the cold hard facts... While we want them handed on a silver platter, that's just not ethical. Giving you their true medical opinion is their number one priority & think it's difficult for them at times to do that & be your friend. Hey, I've had my share of doctors who've lost their humanity along the way [not recently] absolutely no bedside manners. But that's life, everyone's not going to take your hand & gently lead the way down the Yellow Brick Road like we'd like them to, if anything you get kicked in the pants halfway down & a "Good Luck" gesture just to say hey at least I told them.....At any rate OI has gone to Hollywood!!! I'll take awareness any way I can. More exposure can lead to funding & research that may one day lead to a cure. I'm hopeful....very hopeful.