He's been crying for an hour. It's traumatic. I can't make it stop. I used the wrong knife to cut my three year old's chocolate chip pancakes and now my bad knife decision has left me in kiddie hell. While rocking my disabled daughter in my arms I try to bargain with Carson, reason with him, all to no avail. I need more coffee. I can't work under these conditions.
I must get my oldest up for school (isn't it amazing how he can sleep through all this racket?). Cole's 9 and he was up at 12:40am telling me he's not tired enough for bed. Ha. I had to haul his lazy ass out of bed this morning and he's eating cold pancakes because he's too tired to know they have to be heated. All the while I'm rocking my baby girl, who looks like she might be having a few absence seizures (is it any wonder? I feel like having some too from all the chaos).
I'm tired. Scarlett finally fell asleep last night around 1am and was back up at 4am, then Carson up at 6:15 and her (again) at 6:20am. Her acute insomnia is going to kill me. I need more coffee. As I turn on her feeding pump (she's g-tube fed) I feel something oozing on my leg. Ooops. I didn't close the medication port after giving her morning meds. Internal struggle...how much medication leaked out? Is it just the food that came out or some of the drugs? How much? Do I re-dose her to keep the seizures at bay? I just upped her night meds and need to watch if the seizures are still there but now will she be having them because of this morning's snaffu or because the meds need to be increased in the morning too? AArrrgggg. Too many variables. No, I won't re-dose and wait for a week. Remember to close that damn port from now on.
I need a sitter. I need sleep. I won't make it tonight when my husband is working if I don't get a nap. That means finding a sitter now. Good I have one coming at 2:30 but that also means I can't be wake for Cole and his homework. Crap. So much for hanging out with Carson this afternoon. And Scarlett's asleep but needs to be feed or her whole routine is screwed for tonight. Crap crap. Gotta wake her now I guess (sad face/tear). There goes peace and quiet. Did I eat yet? Think I'll have a cookie. And more coffee.
Monday, December 5, 2011
Sunday, December 4, 2011
First Blog
This is my first blog. Hmmm where to start? There are so many things I can start off with but maybe I'll just post my one and only note from FB and start there. I'll see where this takes me day by day I guess....
A
year ago, on September 27 2010, we embarked in to a new world. Our
dear, then 8 month old, daughter was hospitalized for autism testing at
PGRH. As tests were preformed, a bigger picture began to emerge. We were
then air lifted to BCCH for further testing. Over then next few months,
more and more information came our way, at times overwhelming, which
eventually described a one of a kind set of medical issues to which we
have no one to compare to as there is yet to be a discovered person with
Scarlett's medical compilations. So was born "Scarlett Syndrome", or at
least that's what I call it!
When you say asthma, diabetes, or epilepsy, people have a mental list in their head and an understanding (even if it's not in depth) of the severity, causes, side effects that surround these medical terms. Bring your child into Emergency anywhere and scream asthma attack....everyone jumps to action and before you can blink, your child is hooked up and on the road to recovery. Yell out diabetes in a mall and strangers know that every minute counts. When I bring Scarlett in, I bring a book because every issue that she has needs to be said as no one label has been produced yet. Thankfully, I have an amazing medical staff of nurses who fight for Scarlett here in Mackenzie and in Prince George. We all know of the difficulties faced with our revolving doctors but our staff has gone the extra mile in educating themselves about her conditions to keep Scarlett alive. That commitment has lead to a higher quality of care that I am thankful of everyday. My PGRH nurses have become a family to me and my daughter as they have shown me so much respect and value my judgement. The trust they have shown me makes every stay amazing.
Scarlett has changed our lives drastically. We have been challenged physically, emotionally, and socially. We've had to teach our young children about caring for Scarlett in ways that we never thought we would. We've had to educate friends and family about the fragility of life and the joy that Scarlett brings to us. Our priorities have shifted greatly and everyday, even with it's frustrations and normal duties, has become a gift. Even greater still, I have met so many wonderful people that I draw strength from. These connections would never had been made if it weren't for Scarlett.
She has endured lumbar punctures, MRI, double digit EGGs, ECG, too many blood tests to count, viral infections, self starvation which resulted in a NG tube and then eventually PEG tube feedings, severe life-threatening asthma/breathing issues, multiple medication changes to subdue her aggressive epilepsy which resulted in many horrible side effects, severe physical delays that have basically left her as a 21lbs + infant, vision issues, hip dysplasia, curvature of her legs/feet, 98 days out of the year hospitalized (not including appointments) and so much more. We've seen her on the brink of death a few times over the last year. I've shoved tubes through her nose to her stomach, held her down for countless blood tests, poured cold water on her to keep her awake until she couldn't help but fall asleep for EEGs, saw her struggle for breath when everyone around her is fighting for her to live, watched so many seizures that it was bizarre when she wasn't having one, she's been drugged to the point where she wasn't living life anymore. And through it all she's been a fighter, a teacher, forgiving and a joy. We heard her laugh for the first time just shy of her first birthday. When she cries, she has the soft cries of an angel. When she smiles, she melts your heart and captures your soul. She's much too young to be broken and we all strive to fix what we can and hope that it's enough, knowing that it's never going to be enough.
I never really knew how much one person can change a community until I experienced it myself. To borrow a quote from my friend, "I thought I would have to teach my child about the world. Now I have to teach the world about my child." So true! But there are so many people how has helped us along the way. Everything from letting me vent, watching the boys, picking up items, and just taking the time to connect with us.
I get asked a lot, "how do you do it?" or " you just get through it because you have to". No. We don't have to do anything. We could just drop her off, saying she is too much work or she's too hard to deal with or that we don't know how to care for her. We do it because we love her. We do it because she's worth every minute we have with her. We don't simply endure living with her, we thrive because of her. So everyday, we wake, shake the cobwebs in our heads from much too little sleep, roll up our sleeves and don our battle gear to fight to keep her with us for at least another day.
Yes, at 12am, 2:15am, 4:33am, 5:41am we are on our own. However, we know that there are people out there that stand behind us, with us, whenever we need help and for that we're thankful. We no longer worry about the dishes or the laundry or the unkempt floors (well, maybe a little bit), we no longer care about the little things in life that we used to get upset about because they are just that: little things. We've learned that even though we no longer can socialize like we used to that there's people out there that still make the effort to be involved in our lives when we can't reciprocate.
Scarlett is a treasure, a benchmark on how we can all try harder, be more forgiving, less self-involved. Everyday we have with her is one more than we had yesterday. And that brings our first year of Scarlett's medical crisis, our first chapter of "Scarlett Syndrome" to a close, allowing us to start Chapter two with a healthier, happier version of our family! Honestly, I wouldn't have her any other way because then Scarlett wouldn't be Scarlett and she's too wonderful to change.
Chapter 1- On our maiden voyage
by Stacey Hanlon-Godsoe on Tuesday, September 27, 2011 at 7:12am
When you say asthma, diabetes, or epilepsy, people have a mental list in their head and an understanding (even if it's not in depth) of the severity, causes, side effects that surround these medical terms. Bring your child into Emergency anywhere and scream asthma attack....everyone jumps to action and before you can blink, your child is hooked up and on the road to recovery. Yell out diabetes in a mall and strangers know that every minute counts. When I bring Scarlett in, I bring a book because every issue that she has needs to be said as no one label has been produced yet. Thankfully, I have an amazing medical staff of nurses who fight for Scarlett here in Mackenzie and in Prince George. We all know of the difficulties faced with our revolving doctors but our staff has gone the extra mile in educating themselves about her conditions to keep Scarlett alive. That commitment has lead to a higher quality of care that I am thankful of everyday. My PGRH nurses have become a family to me and my daughter as they have shown me so much respect and value my judgement. The trust they have shown me makes every stay amazing.
Scarlett has changed our lives drastically. We have been challenged physically, emotionally, and socially. We've had to teach our young children about caring for Scarlett in ways that we never thought we would. We've had to educate friends and family about the fragility of life and the joy that Scarlett brings to us. Our priorities have shifted greatly and everyday, even with it's frustrations and normal duties, has become a gift. Even greater still, I have met so many wonderful people that I draw strength from. These connections would never had been made if it weren't for Scarlett.
She has endured lumbar punctures, MRI, double digit EGGs, ECG, too many blood tests to count, viral infections, self starvation which resulted in a NG tube and then eventually PEG tube feedings, severe life-threatening asthma/breathing issues, multiple medication changes to subdue her aggressive epilepsy which resulted in many horrible side effects, severe physical delays that have basically left her as a 21lbs + infant, vision issues, hip dysplasia, curvature of her legs/feet, 98 days out of the year hospitalized (not including appointments) and so much more. We've seen her on the brink of death a few times over the last year. I've shoved tubes through her nose to her stomach, held her down for countless blood tests, poured cold water on her to keep her awake until she couldn't help but fall asleep for EEGs, saw her struggle for breath when everyone around her is fighting for her to live, watched so many seizures that it was bizarre when she wasn't having one, she's been drugged to the point where she wasn't living life anymore. And through it all she's been a fighter, a teacher, forgiving and a joy. We heard her laugh for the first time just shy of her first birthday. When she cries, she has the soft cries of an angel. When she smiles, she melts your heart and captures your soul. She's much too young to be broken and we all strive to fix what we can and hope that it's enough, knowing that it's never going to be enough.
I never really knew how much one person can change a community until I experienced it myself. To borrow a quote from my friend, "I thought I would have to teach my child about the world. Now I have to teach the world about my child." So true! But there are so many people how has helped us along the way. Everything from letting me vent, watching the boys, picking up items, and just taking the time to connect with us.
I get asked a lot, "how do you do it?" or " you just get through it because you have to". No. We don't have to do anything. We could just drop her off, saying she is too much work or she's too hard to deal with or that we don't know how to care for her. We do it because we love her. We do it because she's worth every minute we have with her. We don't simply endure living with her, we thrive because of her. So everyday, we wake, shake the cobwebs in our heads from much too little sleep, roll up our sleeves and don our battle gear to fight to keep her with us for at least another day.
Yes, at 12am, 2:15am, 4:33am, 5:41am we are on our own. However, we know that there are people out there that stand behind us, with us, whenever we need help and for that we're thankful. We no longer worry about the dishes or the laundry or the unkempt floors (well, maybe a little bit), we no longer care about the little things in life that we used to get upset about because they are just that: little things. We've learned that even though we no longer can socialize like we used to that there's people out there that still make the effort to be involved in our lives when we can't reciprocate.
Scarlett is a treasure, a benchmark on how we can all try harder, be more forgiving, less self-involved. Everyday we have with her is one more than we had yesterday. And that brings our first year of Scarlett's medical crisis, our first chapter of "Scarlett Syndrome" to a close, allowing us to start Chapter two with a healthier, happier version of our family! Honestly, I wouldn't have her any other way because then Scarlett wouldn't be Scarlett and she's too wonderful to change.
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