My Charley Girl
Tuesday, June 28, 2011
Carepages
Just want to let anyone new to Charlotte's page know that you can read our entire story from the beginning at http://www.carepages.com/carepages/CharlotteSmith. Someday I intend on transferring all of my early updates on her care, and my dealing with all of this over to this blog but who knows when I'll have time for that;)
Tuesday, June 7, 2011
June 7th, 2011
I am still not sure what to write today, or how to feel, or what to think and it's been two weeks since Charlotte's clinic visit with Dr. L'ecuyer. I'm sorry I haven't written to update all of you but I have been crazy busy. I only have one class this semester but it is a condensed chemistry class and between two days of labs (and lab homework), three days of lectures, quizzes, exams, and homework on top of the kids end of the school year festivities I have been non-stop playing catch up.
I have been trying to figure out how many appointments we've had for Charlotte but can't come up with an exact number. It definitely is around the ballpark of 25-30 appts in the two years since her diagnosis, not a lot compared to many of her heart friends but still enough that continuously hoping for improvement and getting none, starts to weigh on a parent. After 6 months to a year of no improvement we were told not to hope for any, so we prepared our minds to hear the words "no change" at each appointment and tried to force our hearts to feel good about it, because we know the words "she's declined" can come just as easily so we take "no change" and run with it. In truth no matter how prepared we are to hear that Charlotte has had "no change" in her heart function, it is relatively impossible to actually "not hope":)
I am getting better and better at holding off my nerves before appointments. The first year and a half I started obsessing and getting my nerves on edge about a month beforehand. Two Mondays ago, whether it is just experience, or the fact that I'm tearing my hair out busy and don't have time to think, I never really felt nervous. For some reason my stomach always knows what I may not be thinking and I get sick feeling about half way through my drive to the hospital. This time, I was more concerned with how she'd act than what they would find as getting tests done on a particularly feisty toddler is becoming more challenging. She was a nightmare during her previous echo, and then with the hospital stay in March I was on the prowl for new strategies to calm her down, or explain the procedure better. Our child life specialist has had ZERO success in making friends with Charlotte, when she came into the room with a doll during the March hospital stay Charlotte would just tell her to "go home", lol, and not in a nice tone of voice.
My new strategy was turning some of the experience over to her so I didn't carry into the office like I normally do but instead let her walk in by herself with my following behind. Without my "making her do it" I thought it might help to ease her into it herself, and she was fabulous when the nurse instructed her for her height, weight and even her blood pressure which she normally cries through. When we went into the EKG room she got a worried look, started to back out and said "go home now Momma?" I just said we couldn't go home but that I could hold her, I explained it was the sticker test, the tech gave her a toy and boom, she sat down on the table and was a champ. Thankfully, putting the stickers(leads) and wires on and off is the longest part of the test.
Next was the exam room, the NP and a new cardiology fellow came in and did their examinations, she was very talkative and friendly to them. When they told me it was time for her echo my stomach dropped because I was DREADING this. Jason wasn't with me to help occupy her, so I was going this one alone:( However she sat on the bed herself without my holding her on my chest, and besides freaking out a few brief times she allowed the tech to get all of her pictures (up until the arch anyway, then she lost it). Dr. L'ecuyer came in and told the tech he had been watching and thought she was good on the pictures so Charlotte was relieved to be done:) I am so proud of her, I know echo days will continue to be sketchy and I'm sure her moods will vary from appointment to appointment but "yeah for Charley" on this one.
So then came our chat with Dr. L'ecuyer, I was eager to hear what he had to say because the way he sounded when he told the tech that she could finish up and he'd seen enough had a different tone than usual. So we sat down and he said that he was confident in reporting that it seemed her shortening fraction had improved a little. It had been roughly 8-9% over the last two years and today seemed better. Then he waited and took a few seconds pause as I said dumbfounded "wait so you're saying her shortening fraction improved slightly?" "What is it now?" And he said that it was around 15% which brought her from the severe category to moderate. I then said "wait?? Her shortening fraction right?" And he continued to answer the same question at least three more times as I was in shock.
I think I kept waiting for him to say this was a joke, he didn't seem nearly as excited as my heart felt. He finally cracked a smile after my fifth time asking "her shortening fraction right?" and he said "yes, today it's good news". It must be incredibly hard to be a physician that deals with such tragic and heart breaking news so often.
I see it in Dr. Mastropietro too, when they have good news you can see inside they are as excited as you are, but they can't ever let it out because they have to be the realists, or the conservative ones so they can't get too emotional with patients as they know things can always reverse. Not to mention and it really is a shame that I swear they are all terrified of being sued and allowing patients into their emotions might make them vulnerable to saying something that if unfounded or that backfires, could get them in trouble.
If you had seen my face, and him sitting in the room with my calm excitement you'd understand what I mean. I think if I had grabbed his hands and made him dance a jig with me he would've;) It seems their "god complexes" have caught on and now WE EXPECT them to be "god" which is highly irrational and sad. I wish they could rejoice in every triumph just as we, the parents do, but at least they aren't fooling me, I know when they are relieved or happy about something and Dr. L'ecuyer was happy, even if he couldn't dance a jig:)
He also (as do I) knows that in the scheme of things it doesn't mean a whole lot. He knows that things can go up or down at anytime, and he knows that while you might get better, you also might get worse. There are no guarantees in cardiomyopathy, no set paths to tread. I don't care though, for right now I am just going to revel in a small triumph. The point to me is that the medication helped, and the heart can heal if given the right tools even if that's all we ever get. Dr. L'ecuyer said we'll never know if it's the meds or if she would've just improved over time, but I think he and I both know it's the meds. I just don't feel this was caused by a virus in a child that had never been sick. The fact that it took TWO YEARS to see any glimpse of improvement of her heart function also tells me this.
I practically ran to my car, I needed to get to it's solace because I knew tears were coming. There have been countless moments throughout these last two years when although I don't think God in particular healed Charlotte, or can change her course I know that he is near. Or my angels are near, or Charlotte's angels are near. I sat in the parking garage on the 11th floor overlooking Tiger Stadium, Ford Field and the sunlight glittering off a city that everyone says is dead, and I cried the happiest tears I think I've ever had. My eyes were sore and burning for two days because I just couldn't stop crying. She's not healed, she might still require a transplant at some point in her future but she improved. Even today she's not far away from the decision to be listed, I suppose she never will be but with even the tiniest improvement, it means catching a decrease and having that much more time to be well while waiting for a transplant. The last two years have felt like the grim reaper is standing at the end of my driveway just waiting to take her, and my tears are washing him away down the street just a little further.
We are fighting the fight and although I knew not to hope, for some reason lately I have looked at Charlotte and felt her hugs and wondered if she might improve. Her spirit is a strong one (lol, literally) and although I know this fight will be our life I don't feel like the other shoe is going to drop at any moment anymore. I have hope, and I have faith that she can have a long and wonderful life. By far this has been the toughest time of my life, of my marriage, of my motherhood but I think I might survive it now, just a little hope goes a long way:)
Goodnight everyone, I hope this all makes sense as I haven't slept much lately. Thank you for continuing to pray for us, and keep us in your thoughts. Thank you for passing on the word that organ donation is worth it.
XOXOXO.
I have been trying to figure out how many appointments we've had for Charlotte but can't come up with an exact number. It definitely is around the ballpark of 25-30 appts in the two years since her diagnosis, not a lot compared to many of her heart friends but still enough that continuously hoping for improvement and getting none, starts to weigh on a parent. After 6 months to a year of no improvement we were told not to hope for any, so we prepared our minds to hear the words "no change" at each appointment and tried to force our hearts to feel good about it, because we know the words "she's declined" can come just as easily so we take "no change" and run with it. In truth no matter how prepared we are to hear that Charlotte has had "no change" in her heart function, it is relatively impossible to actually "not hope":)
I am getting better and better at holding off my nerves before appointments. The first year and a half I started obsessing and getting my nerves on edge about a month beforehand. Two Mondays ago, whether it is just experience, or the fact that I'm tearing my hair out busy and don't have time to think, I never really felt nervous. For some reason my stomach always knows what I may not be thinking and I get sick feeling about half way through my drive to the hospital. This time, I was more concerned with how she'd act than what they would find as getting tests done on a particularly feisty toddler is becoming more challenging. She was a nightmare during her previous echo, and then with the hospital stay in March I was on the prowl for new strategies to calm her down, or explain the procedure better. Our child life specialist has had ZERO success in making friends with Charlotte, when she came into the room with a doll during the March hospital stay Charlotte would just tell her to "go home", lol, and not in a nice tone of voice.
My new strategy was turning some of the experience over to her so I didn't carry into the office like I normally do but instead let her walk in by herself with my following behind. Without my "making her do it" I thought it might help to ease her into it herself, and she was fabulous when the nurse instructed her for her height, weight and even her blood pressure which she normally cries through. When we went into the EKG room she got a worried look, started to back out and said "go home now Momma?" I just said we couldn't go home but that I could hold her, I explained it was the sticker test, the tech gave her a toy and boom, she sat down on the table and was a champ. Thankfully, putting the stickers(leads) and wires on and off is the longest part of the test.
Next was the exam room, the NP and a new cardiology fellow came in and did their examinations, she was very talkative and friendly to them. When they told me it was time for her echo my stomach dropped because I was DREADING this. Jason wasn't with me to help occupy her, so I was going this one alone:( However she sat on the bed herself without my holding her on my chest, and besides freaking out a few brief times she allowed the tech to get all of her pictures (up until the arch anyway, then she lost it). Dr. L'ecuyer came in and told the tech he had been watching and thought she was good on the pictures so Charlotte was relieved to be done:) I am so proud of her, I know echo days will continue to be sketchy and I'm sure her moods will vary from appointment to appointment but "yeah for Charley" on this one.
So then came our chat with Dr. L'ecuyer, I was eager to hear what he had to say because the way he sounded when he told the tech that she could finish up and he'd seen enough had a different tone than usual. So we sat down and he said that he was confident in reporting that it seemed her shortening fraction had improved a little. It had been roughly 8-9% over the last two years and today seemed better. Then he waited and took a few seconds pause as I said dumbfounded "wait so you're saying her shortening fraction improved slightly?" "What is it now?" And he said that it was around 15% which brought her from the severe category to moderate. I then said "wait?? Her shortening fraction right?" And he continued to answer the same question at least three more times as I was in shock.
I think I kept waiting for him to say this was a joke, he didn't seem nearly as excited as my heart felt. He finally cracked a smile after my fifth time asking "her shortening fraction right?" and he said "yes, today it's good news". It must be incredibly hard to be a physician that deals with such tragic and heart breaking news so often.
I see it in Dr. Mastropietro too, when they have good news you can see inside they are as excited as you are, but they can't ever let it out because they have to be the realists, or the conservative ones so they can't get too emotional with patients as they know things can always reverse. Not to mention and it really is a shame that I swear they are all terrified of being sued and allowing patients into their emotions might make them vulnerable to saying something that if unfounded or that backfires, could get them in trouble.
If you had seen my face, and him sitting in the room with my calm excitement you'd understand what I mean. I think if I had grabbed his hands and made him dance a jig with me he would've;) It seems their "god complexes" have caught on and now WE EXPECT them to be "god" which is highly irrational and sad. I wish they could rejoice in every triumph just as we, the parents do, but at least they aren't fooling me, I know when they are relieved or happy about something and Dr. L'ecuyer was happy, even if he couldn't dance a jig:)
He also (as do I) knows that in the scheme of things it doesn't mean a whole lot. He knows that things can go up or down at anytime, and he knows that while you might get better, you also might get worse. There are no guarantees in cardiomyopathy, no set paths to tread. I don't care though, for right now I am just going to revel in a small triumph. The point to me is that the medication helped, and the heart can heal if given the right tools even if that's all we ever get. Dr. L'ecuyer said we'll never know if it's the meds or if she would've just improved over time, but I think he and I both know it's the meds. I just don't feel this was caused by a virus in a child that had never been sick. The fact that it took TWO YEARS to see any glimpse of improvement of her heart function also tells me this.
I practically ran to my car, I needed to get to it's solace because I knew tears were coming. There have been countless moments throughout these last two years when although I don't think God in particular healed Charlotte, or can change her course I know that he is near. Or my angels are near, or Charlotte's angels are near. I sat in the parking garage on the 11th floor overlooking Tiger Stadium, Ford Field and the sunlight glittering off a city that everyone says is dead, and I cried the happiest tears I think I've ever had. My eyes were sore and burning for two days because I just couldn't stop crying. She's not healed, she might still require a transplant at some point in her future but she improved. Even today she's not far away from the decision to be listed, I suppose she never will be but with even the tiniest improvement, it means catching a decrease and having that much more time to be well while waiting for a transplant. The last two years have felt like the grim reaper is standing at the end of my driveway just waiting to take her, and my tears are washing him away down the street just a little further.
We are fighting the fight and although I knew not to hope, for some reason lately I have looked at Charlotte and felt her hugs and wondered if she might improve. Her spirit is a strong one (lol, literally) and although I know this fight will be our life I don't feel like the other shoe is going to drop at any moment anymore. I have hope, and I have faith that she can have a long and wonderful life. By far this has been the toughest time of my life, of my marriage, of my motherhood but I think I might survive it now, just a little hope goes a long way:)
Goodnight everyone, I hope this all makes sense as I haven't slept much lately. Thank you for continuing to pray for us, and keep us in your thoughts. Thank you for passing on the word that organ donation is worth it.
XOXOXO.
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