"We often take for granted the very things that deserve the most gratitude." ~Cynthia Ozick
HOW DO YOU USUALLY SPEND THANKSGIVING?
"Normally we go over my husbands parents house and we all get together and have a nice Thanksgiving where both families contribute to a nice dinner. This year's gonna be a little different since they're in Arizona. I'm gonna be making dinner myself. It's my first time cooking Thanksgiving dinner. Nobody eats turkey (except my husband), so we're gonna start a new tradition. We're gonna make chicken breast for Thanksgiving dinner.
SO IS IT JUST YOU AND YOUR HUSBAND AND CHILDREN THIS YEAR?
"Yep. Just us. It's kinda weird."
ARE YOU EXCITED ABOUT THAT OR WILL YOU MISS THAT IT'S NOT THE WHOLE FAMILY?
"I'll kind of miss the whole family. You dread it and drag your feet getting ready and you're like, "I don't wanna do this". But once you're there you're like, "Wow, this is nice", and it makes it feel like the holidays. Just being in my own house might make me a little sad, but I can be in my PJ's."
WHAT ARE YOU MOST THANKFUL FOR THIS THANKSGIVING?
"Of course I'd have to say my Madelyn (one of her twin daughters). That she's healthy and with us after her battle with HUS (Hemolytic-Uremic Syndrome). It's usually associated with an E coli infection and it destroys your red blood cells. If you looked under a microscope it would look like sickle cell anemia. They're broken (the cells) and it clogs up all your organs, clogs your brain, everything shuts down. Madelyn had a rare form of that from strep, it's called Strep Pneumococci HUS, and if you Google it, you'll get a lot of Dr.'s stuff, but not Web MD type of stuff (for patients to read). You'll find stuff on E coli HUS, but not this one. It's a much rarer form and more aggressive. It shut her kidneys down, she was on life support, in the blink of an eye, from a germ. We struggled for seven weeks in the hospital with her. She came out of it and we're very blessed for that. She does have permanent kidney disease, stage 3. She's still on a feeding tube. She has developmental delays due to all this, but you'd never know 'cause she has a smile on her face and runs around like a happy four year old. I'm very thankful for that. This experience has taught us life lessons. Your really don't realize your every day life is, "I gotta get this done. I gotta go pay this." None of it matters. It's all stupid and dumb. This focused us on what was important in life."
WHEN DID THIS HAPPEN?
"When she was 2 years old, November 7, 2012. She was admitted with pneumonia and in the middle of the night, a rapid response team came into the room and rushed us out. They were real calm. I have to give it to the nurses and staff. They didn't say, "Oh my God, there's something terribly wrong!". They just said "We're just gonna keep a closer eye on her" and they were smiling. You gotta give it to them for not panicking a parent and they calmly took me into the ICU with her. Her kidneys shut down, so she blew up very quickly. She had 8 blood transfusions, 5 days of plasma transfusions. The Red Cross came in with volunteers to do that. It's not a service a regular hospital does, the Red Cross is the only one that does that. They volunteer their time, the nurses and everything and it's amazing."
THAT'S SOMETHING ELSE TO BE THANKFUL FOR, ISN'T IT?
"Absolutely. And Dr. Connelly (Nephrologist at St. Christopher's Hospital), who diagnosed her. A lot of times, what kills children from HUS is not being diagnosed quickly enough. Thankfully, she (the Dr.) was on call when this came down. I'm part of an HUS support group and a lot of parents didn't have their children make it through this. There's one in particular: she was three when she was diagnosed. I'm good friends with her mom in our support group. She was one that didn't make it. She died during the symptomatic phase. She had the E coli type. But because of what she went through, the doctors learned from it. As horrible as it is that they learned from her what they SHOULDN'T do, they have learned so much more than they knew 12 years ago. It's heartbreaking. She was a groundbreaker for the kids today.
Madelyn did recover, we were very blessed with that."
"Normally we go over my husbands parents house and we all get together and have a nice Thanksgiving where both families contribute to a nice dinner. This year's gonna be a little different since they're in Arizona. I'm gonna be making dinner myself. It's my first time cooking Thanksgiving dinner. Nobody eats turkey (except my husband), so we're gonna start a new tradition. We're gonna make chicken breast for Thanksgiving dinner.
SO IS IT JUST YOU AND YOUR HUSBAND AND CHILDREN THIS YEAR?
"Yep. Just us. It's kinda weird."
ARE YOU EXCITED ABOUT THAT OR WILL YOU MISS THAT IT'S NOT THE WHOLE FAMILY?
"I'll kind of miss the whole family. You dread it and drag your feet getting ready and you're like, "I don't wanna do this". But once you're there you're like, "Wow, this is nice", and it makes it feel like the holidays. Just being in my own house might make me a little sad, but I can be in my PJ's."
WHAT ARE YOU MOST THANKFUL FOR THIS THANKSGIVING?
"Of course I'd have to say my Madelyn (one of her twin daughters). That she's healthy and with us after her battle with HUS (Hemolytic-Uremic Syndrome). It's usually associated with an E coli infection and it destroys your red blood cells. If you looked under a microscope it would look like sickle cell anemia. They're broken (the cells) and it clogs up all your organs, clogs your brain, everything shuts down. Madelyn had a rare form of that from strep, it's called Strep Pneumococci HUS, and if you Google it, you'll get a lot of Dr.'s stuff, but not Web MD type of stuff (for patients to read). You'll find stuff on E coli HUS, but not this one. It's a much rarer form and more aggressive. It shut her kidneys down, she was on life support, in the blink of an eye, from a germ. We struggled for seven weeks in the hospital with her. She came out of it and we're very blessed for that. She does have permanent kidney disease, stage 3. She's still on a feeding tube. She has developmental delays due to all this, but you'd never know 'cause she has a smile on her face and runs around like a happy four year old. I'm very thankful for that. This experience has taught us life lessons. Your really don't realize your every day life is, "I gotta get this done. I gotta go pay this." None of it matters. It's all stupid and dumb. This focused us on what was important in life."
WHEN DID THIS HAPPEN?
"When she was 2 years old, November 7, 2012. She was admitted with pneumonia and in the middle of the night, a rapid response team came into the room and rushed us out. They were real calm. I have to give it to the nurses and staff. They didn't say, "Oh my God, there's something terribly wrong!". They just said "We're just gonna keep a closer eye on her" and they were smiling. You gotta give it to them for not panicking a parent and they calmly took me into the ICU with her. Her kidneys shut down, so she blew up very quickly. She had 8 blood transfusions, 5 days of plasma transfusions. The Red Cross came in with volunteers to do that. It's not a service a regular hospital does, the Red Cross is the only one that does that. They volunteer their time, the nurses and everything and it's amazing."
THAT'S SOMETHING ELSE TO BE THANKFUL FOR, ISN'T IT?
"Absolutely. And Dr. Connelly (Nephrologist at St. Christopher's Hospital), who diagnosed her. A lot of times, what kills children from HUS is not being diagnosed quickly enough. Thankfully, she (the Dr.) was on call when this came down. I'm part of an HUS support group and a lot of parents didn't have their children make it through this. There's one in particular: she was three when she was diagnosed. I'm good friends with her mom in our support group. She was one that didn't make it. She died during the symptomatic phase. She had the E coli type. But because of what she went through, the doctors learned from it. As horrible as it is that they learned from her what they SHOULDN'T do, they have learned so much more than they knew 12 years ago. It's heartbreaking. She was a groundbreaker for the kids today.
Madelyn did recover, we were very blessed with that."
HOW WILL THIS AFFECT HER IN THE FUTURE?
"She still has a very bad food aversion, she was left with a sensory dysfunction in her mouth from being intubated for so long. She doesn't like food in her mouth, so she has a very adverse reaction to certain textures. She has a G tube ( in her stomach) to give her nutrients and medicines. She has high blood pressure. She'll have that for life. She has iron, vitamin D, and electrolyte deficiencies. So every two hours she has fluids pumped into her. The only time there's a break is at bedtime. She's going to pre-k right now and I have to send a nurse to school since there's no nursing staff at the school. She's immune-compromised as well. A few weeks ago, both of them (twins) had bronchitis. The doctors said it was viral and that Allison's will pass on it's own, but Maddy we needed to take to the ER for a nebulizer treatment and she was on those for two weeks, every four hours because she also has scarring on her lungs from the pneumonia she had two years ago. And because she has stage 3 kidney disease and her kidneys are scarred and aren't growing with her, she'll eventually need a kidney transplant."
WHEN WILL THEY DO THAT?
"It's a guessing game. It could be ten years from now, it could be five years from now. As she grows, it's just gonna get worse. We wanna hold on to the kidneys she she has for as long as we can."
DOES SHE UNDERSTAND WHAT'S HAPPENED TO HER?
"She does to an extent. She has a lot of developmental delays and autism (high functioning) so there's a lot of stuff she doesn't understand. She knows she has to get medicine. She'll pull her shirt up and say "Mommy, medicine." She knows she has to get her temperature, blood pressure, pulse-ox. She knows it's a routine we do every day and she's really good about it. As far as cognitively, I don't think she understands. Her twin sister does though. She'll say "Maddy is sick" or "Maddy, are you ok today?".
But through everything, we have her. We physically have her here. We have her smiling, saying "I love today. Today's the best day ever!". Or she'll be looking at a cross and saying "Look there's Jesus! Jesus smiles at me!" She's with us. I've learned so much more about her in two years than probably any parent might know about their child in a lifetime. Two years ago, holding her hand, I thought, "I don't know her favorite color". I was worried about going to work at my new job. It really put stuff in perspective. My family is my job. That made me focus better. Now I know her favorite color(s). They're purple and red. Everything has to be purple and red, and she loves smily faces."
WHY DO YOU THINK YOU DIDN'T KNOW THESE THINGS THEN?
"Some of it was her age, but also, I wasn't as focused on them. It was more, "Okay, they're (her children) situated, I got a babysitter, let me get to my job. I have to prove myself since I've only been here (her job at the time) for 6 weeks. I have to put myself out there. I have to be the star." That drive, you start something, you move forward, you get tunnel vision. Something like this will push you back and you look at the full picture.
But, she's wonderful. And for us to make it through....a lot of parents don't get the opportunity to get that second chance. On our HUS support group, there's articles that parents can stuffer PTSD because it's such a horrendous disease. Last year on the one year anniversary, I just collapsed and I didn't wanna go anywhere, didn't want anyone near the house, near Madelyn. And this year, I said you know what, I'm not gonna feel like that victim anymore. I'm not gonna let her be a victim anymore. We're not victims, we're surviviors. We're gonna stand a little straighter, a little taller and we're gonna share and let people know that bad stuff happens, but it's how we move on from it. I'm very thankful for the little smile, the little giggle and her running down the hallway saying "Mommy, guess what!? I farted-ed." It's those little things. I look over at my husband and go "This is why it's ok. We're grateful to hear that little voice."
"She still has a very bad food aversion, she was left with a sensory dysfunction in her mouth from being intubated for so long. She doesn't like food in her mouth, so she has a very adverse reaction to certain textures. She has a G tube ( in her stomach) to give her nutrients and medicines. She has high blood pressure. She'll have that for life. She has iron, vitamin D, and electrolyte deficiencies. So every two hours she has fluids pumped into her. The only time there's a break is at bedtime. She's going to pre-k right now and I have to send a nurse to school since there's no nursing staff at the school. She's immune-compromised as well. A few weeks ago, both of them (twins) had bronchitis. The doctors said it was viral and that Allison's will pass on it's own, but Maddy we needed to take to the ER for a nebulizer treatment and she was on those for two weeks, every four hours because she also has scarring on her lungs from the pneumonia she had two years ago. And because she has stage 3 kidney disease and her kidneys are scarred and aren't growing with her, she'll eventually need a kidney transplant."
WHEN WILL THEY DO THAT?
"It's a guessing game. It could be ten years from now, it could be five years from now. As she grows, it's just gonna get worse. We wanna hold on to the kidneys she she has for as long as we can."
DOES SHE UNDERSTAND WHAT'S HAPPENED TO HER?
"She does to an extent. She has a lot of developmental delays and autism (high functioning) so there's a lot of stuff she doesn't understand. She knows she has to get medicine. She'll pull her shirt up and say "Mommy, medicine." She knows she has to get her temperature, blood pressure, pulse-ox. She knows it's a routine we do every day and she's really good about it. As far as cognitively, I don't think she understands. Her twin sister does though. She'll say "Maddy is sick" or "Maddy, are you ok today?".
But through everything, we have her. We physically have her here. We have her smiling, saying "I love today. Today's the best day ever!". Or she'll be looking at a cross and saying "Look there's Jesus! Jesus smiles at me!" She's with us. I've learned so much more about her in two years than probably any parent might know about their child in a lifetime. Two years ago, holding her hand, I thought, "I don't know her favorite color". I was worried about going to work at my new job. It really put stuff in perspective. My family is my job. That made me focus better. Now I know her favorite color(s). They're purple and red. Everything has to be purple and red, and she loves smily faces."
WHY DO YOU THINK YOU DIDN'T KNOW THESE THINGS THEN?
"Some of it was her age, but also, I wasn't as focused on them. It was more, "Okay, they're (her children) situated, I got a babysitter, let me get to my job. I have to prove myself since I've only been here (her job at the time) for 6 weeks. I have to put myself out there. I have to be the star." That drive, you start something, you move forward, you get tunnel vision. Something like this will push you back and you look at the full picture.
But, she's wonderful. And for us to make it through....a lot of parents don't get the opportunity to get that second chance. On our HUS support group, there's articles that parents can stuffer PTSD because it's such a horrendous disease. Last year on the one year anniversary, I just collapsed and I didn't wanna go anywhere, didn't want anyone near the house, near Madelyn. And this year, I said you know what, I'm not gonna feel like that victim anymore. I'm not gonna let her be a victim anymore. We're not victims, we're surviviors. We're gonna stand a little straighter, a little taller and we're gonna share and let people know that bad stuff happens, but it's how we move on from it. I'm very thankful for the little smile, the little giggle and her running down the hallway saying "Mommy, guess what!? I farted-ed." It's those little things. I look over at my husband and go "This is why it's ok. We're grateful to hear that little voice."
If you'd like more info about HUS or to learn how you can help, visit: www.kidney.org/atoz/content/hemolytic
