I joined a group on Facebook for parents of children with CVS and found a new blog written by another passionate CVS-Mommy.... check it out! It's great!
CLICK HERE!!!
Sunday, April 13, 2014
Sunday, April 6, 2014
Glass Half Full, Glass Half Empty
Sometimes I struggle with how to express my frustration and sadness with this disease. In some ways it's no big deal. It's like having asthma, something to be aware of at all times but it doesn't have to control your life. But other times, particularly when E is quite sick, I want to scream and cry.
Glass Half Empty:
CVS sucks so bad! No parent wants their kid to throw-up. It's sad, it's hard to watch and you never know when it's going to happen again (an hour? a day? not for another year?). Puking is THE WORST. Last Monday night Ellie had only been asleep about an hour when she came out to the living room in tears, holding her stomach. She made it to the bathroom in just enough time. It was A LOT of vomit. Our immediate reaction was that this was not a typical CVS episode and probably the flu. Normally her episodes happen much later in the night or in the morning. Normally her episodes that involve vomit--well, the vomit is usually a lot of bile and water, not everything she had eaten that day. Anyway we cleaned her up, changed clothes and gave her a zofran (anti-vomiting medicine). About an hour later she threw-up again. About 45 minutes later, again. Now, if you are a parent of a little one you know that vomiting 3 times in one night is hard, much less 3 times in less than three hours. But also, I was stumped. Why didn't the zofran work? The zofran has ALWAYS worked for our Eleanor. Could I give her another one? At this point she was also totally miserable. Asking me if this was going to happen all night? Begging me to make it stop. So at midnight I called her pediatric gastro doctor. He said he wasn't sure why it didn't work, maybe it was the flu...fever? nope. diarrhea? nope. been around sick people? not that we know of. Well, he said, "Well hopefully it will pass soon. As long as she is not dehydrated I'd rather she not go to the ER."
Between that midnight phone call and 2:45am Ellie vomited approximately 8-10 more times. It's like labor, the vomiting gets closer and closer together. Other things eventually happen too. Ellie goes from crying and wanting hugs to unable to even sit up to puke. I had to hold her up to vomit. She doesn't want to talk, doesn't open her eyes. And you can barely call it vomiting by the end. Her body is convulsing and some bile, a little water comes out. It goes from so sad to a little scary. 2:45 I call the doctor back. He says, "Yes. Yes, go get her fluids." So, I wake Brian, we lay Ellie in the back seat and off she and I go to the ER.
Not surprisingly the ER people have to ask me 2 or 3 times what she has. "It's called what? And is this an official diagnosis?" The head doctor comes in and is obviously open to the diagnosis and asks me what is ER protocol for Ellie, but I have no idea because since her diagnosis we haven't had to come to the ER, so I (in my stupid and exhausted state) respond, "I think just to get her to stop vomiting?"
The nurse might have been new, he certainly was NOT talkative or a kid-person. He had a lot of trouble getting the IV in, which, once again, was absolutely so sad to watch. Poor Ellie who had barely been talking or opening her eyes was suddenly crying and telling him to stop. Another nurse came in just as this nurse got the IV in. Ugh.
Fluids went in, another dose of zofran in her IV and soon enough Ellie was sitting up and asking to go home. The thing was, she still didn't look good. She looked sort of yellow. She said her stomach was "3/4 good and 1/4 not good." But it had been well over an hour, maybe two, since she had last vomited, I could barely keep my eyes open (I was at almost 24 hours of awake) and I knew that if she didn't sleep--deep, restorative sleep--she wasn't going to feel better. The chances of her sleeping there were slim. It was loud, really loud. In fact, I'm pretty sure an elderly man had a terrible heart event in the little area right next to us. So, we went home. Getting out of the car she asked to be carried (not like her) then when we got into the foyer of our building she began crying and started vomiting all the water and 2 saltines she had at the ER.
Because she is a total sweetheart, she immediately began apologizing in-between her hurling: "I'm so sorry Mommy! I swear I thought I was all better at the hospital!" MORE MOMMY HEARTBREAK!
And here is where I had my first full blown, 100% anxiety attack since the last time I flew on a plane... my skin started getting tingly and hot, I felt light-headed, I felt I could faint, or maybe I wanted to faint... it just hit me like a ton of bricks...
Her medicine didn't work. Her medicine didn't work. The ER fluids didn't work. Oh my God, what if she is going to be one of the poor souls I've read about online, who can't stop throwing up for days at a time?
Brian was awake now helping us. I told him I was having a panic attack and I needed to sleep for a few hours. Ellie asked me to stay by her. I told her I just needed 2 hours and then I'd be back. She agreed. I went into our room and cried and cried and cried.
CVS Sucks.
It passed. Ellie slept for about an hour and 45 minutes and that helped. She slept a little bit here and there throughout the day but no more puking.
Then that night she was up a LOT of the night with terrible pain in her lower stomach. She would sleep/snooze for 10-20 minutes and then cry out and call for me, "Mommy? It hurts! It hurts so bad!" And then sleep and then cry out again. That went on for about 3 hours. I began wondering about her appendix or a UTI or a blockage in her intestines. Who has that much pain without something else going on?
The next day (day three) the pains slowed down and by 3pm we went for a walk. Then the doctor called and said she should go to hospital for urine testing and x-ray to make sure the pain is nothing more than CVS. At 5pm we dropped Colin off at our loving, generous, wonderful, sweet, kind, helpful cousin's house and went to do those tests. At 7pm we picked up one very happy little Colin and went home for bed for everyone. At 11pm Brian woke me up (I was in Ellie's room) and said both he and Colin had thrown up.
I spent that night with a sick and groaning Colin. I gave Colin one of Ellie's zofran pills after he vomited and he did not vomit again. He was awake a lot but no more puking. He recovered fast and was asking for food all day the following day. Brian did not take a zofran and puked once more and had some other, mmm, stomach issues.
At first I felt relieved. 'Ahh! So it was the flu!' But eventually was back to wondering why didn't the medicine work for her? Why did it get so awful that we had to go to the ER? FOUR doses of meds that night for her and they did nothing, the ER fluids probably helped her from becoming more dehydrated but didn't fix it. Colin takes one pill and he doesn't puke again. When I finally came down with it early Friday morning, I took one pill and no puking. My poor baby girl has 4 doses that don't stop it. Scary, sad and confusing. I don't want the ER to be our new norm. In fact, if I never have to see her that miserable again I'd be fine with that! Poor Ellie.
Glass Half Full
But, as far as we know we are not one of the poor families who are in and out of the ER and/or hospitalized on a regular basis. Going through last week gives me so much more appreciation for the families who haven't found medicine to stop the vomiting.
I. CAN. NOT. IMAGINE.
I really can't. Personally, I can't stand throwing up once or twice. I literally dread puking. So I honestly can't imagine what it would be like to puke so much that you end up in the ER... and then to know that you will likely have to do it all over again in a month or two or three. I have spent a good amount of my time and energy in the last few days thinking, wondering and praying that this awful episode was just a fluke, spawned by the horrible stomach flu and that her body just couldn't handle it. I feel selfish saying that since now I am friends, or at least phone call/facebook/e-mail friends with a few families who have hospital visits as a regular occurrence for their cvs kids. But, it's a selfish desire that I think we all share. Of course, of course we all want it to end and never happen again. That's why we are in this fight together. That's why it has been so helpful and encouraging to make other CVS friends online. We ask questions, give suggestions, feel bad for each other, and know just how it feels to watch your kiddo so miserable and know that you can't make it stop.
I have also thought a lot about kids with other horrible diseases this week, life-threatening diseases that land them in the hospital all the time. Little kids who have to do chemo and I bet feel the way Ellie feels during an episode but on quite a regular basis. I think getting a little peek into that world has made me even more sad for those families. Brian has a good friend from high school who has a little boy with brain cancer. I think of them so often and this past week I thought of them a LOT.
So in many ways we are so lucky. This is not a life-threatening illness and it can generally be managed. In-between these hard spells Ellie has a totally average, normal day-to-day existence. Normally Ellie's medicine works wonders and I'm praying that hasn't changed, but if it has, we are connected to great doctors and specialists who will try hard to figure out how to make it better. We are so lucky that Ellie, while generally a silly, squealing, whining, girly 7-year-old can also be wicked, wicked brave and tough. She is easily the most positive person I know and bounces back into normal life with lots of smiles and hugs and a "what's next?" attitude. And, we are so lucky to have so many family and friends who don't mind my scared text messages even at 3am and don't mind my LONG LONG rambling updates like this one! We are lucky to have my Mom who has a strong bond with Ellie and wants to know every detail and would drive down in a heartbeat if we really needed help. And we are lucky to have family (cousins) just around the corner who love us so well that they check on us each day during our hard times and don't hate us when we pass the flu on to their family (So, so sorry!!).
We have so much more good in our lives than struggles...but let me tell you, at 5am in the ER with your little one in such total misery-- it's easy to forget that "this too shall pass."
Glass Half Empty:
CVS sucks so bad! No parent wants their kid to throw-up. It's sad, it's hard to watch and you never know when it's going to happen again (an hour? a day? not for another year?). Puking is THE WORST. Last Monday night Ellie had only been asleep about an hour when she came out to the living room in tears, holding her stomach. She made it to the bathroom in just enough time. It was A LOT of vomit. Our immediate reaction was that this was not a typical CVS episode and probably the flu. Normally her episodes happen much later in the night or in the morning. Normally her episodes that involve vomit--well, the vomit is usually a lot of bile and water, not everything she had eaten that day. Anyway we cleaned her up, changed clothes and gave her a zofran (anti-vomiting medicine). About an hour later she threw-up again. About 45 minutes later, again. Now, if you are a parent of a little one you know that vomiting 3 times in one night is hard, much less 3 times in less than three hours. But also, I was stumped. Why didn't the zofran work? The zofran has ALWAYS worked for our Eleanor. Could I give her another one? At this point she was also totally miserable. Asking me if this was going to happen all night? Begging me to make it stop. So at midnight I called her pediatric gastro doctor. He said he wasn't sure why it didn't work, maybe it was the flu...fever? nope. diarrhea? nope. been around sick people? not that we know of. Well, he said, "Well hopefully it will pass soon. As long as she is not dehydrated I'd rather she not go to the ER."
Between that midnight phone call and 2:45am Ellie vomited approximately 8-10 more times. It's like labor, the vomiting gets closer and closer together. Other things eventually happen too. Ellie goes from crying and wanting hugs to unable to even sit up to puke. I had to hold her up to vomit. She doesn't want to talk, doesn't open her eyes. And you can barely call it vomiting by the end. Her body is convulsing and some bile, a little water comes out. It goes from so sad to a little scary. 2:45 I call the doctor back. He says, "Yes. Yes, go get her fluids." So, I wake Brian, we lay Ellie in the back seat and off she and I go to the ER.
Not surprisingly the ER people have to ask me 2 or 3 times what she has. "It's called what? And is this an official diagnosis?" The head doctor comes in and is obviously open to the diagnosis and asks me what is ER protocol for Ellie, but I have no idea because since her diagnosis we haven't had to come to the ER, so I (in my stupid and exhausted state) respond, "I think just to get her to stop vomiting?"
The nurse might have been new, he certainly was NOT talkative or a kid-person. He had a lot of trouble getting the IV in, which, once again, was absolutely so sad to watch. Poor Ellie who had barely been talking or opening her eyes was suddenly crying and telling him to stop. Another nurse came in just as this nurse got the IV in. Ugh.
Fluids went in, another dose of zofran in her IV and soon enough Ellie was sitting up and asking to go home. The thing was, she still didn't look good. She looked sort of yellow. She said her stomach was "3/4 good and 1/4 not good." But it had been well over an hour, maybe two, since she had last vomited, I could barely keep my eyes open (I was at almost 24 hours of awake) and I knew that if she didn't sleep--deep, restorative sleep--she wasn't going to feel better. The chances of her sleeping there were slim. It was loud, really loud. In fact, I'm pretty sure an elderly man had a terrible heart event in the little area right next to us. So, we went home. Getting out of the car she asked to be carried (not like her) then when we got into the foyer of our building she began crying and started vomiting all the water and 2 saltines she had at the ER.
Because she is a total sweetheart, she immediately began apologizing in-between her hurling: "I'm so sorry Mommy! I swear I thought I was all better at the hospital!" MORE MOMMY HEARTBREAK!
And here is where I had my first full blown, 100% anxiety attack since the last time I flew on a plane... my skin started getting tingly and hot, I felt light-headed, I felt I could faint, or maybe I wanted to faint... it just hit me like a ton of bricks...
Her medicine didn't work. Her medicine didn't work. The ER fluids didn't work. Oh my God, what if she is going to be one of the poor souls I've read about online, who can't stop throwing up for days at a time?
Brian was awake now helping us. I told him I was having a panic attack and I needed to sleep for a few hours. Ellie asked me to stay by her. I told her I just needed 2 hours and then I'd be back. She agreed. I went into our room and cried and cried and cried.
CVS Sucks.
It passed. Ellie slept for about an hour and 45 minutes and that helped. She slept a little bit here and there throughout the day but no more puking.
Then that night she was up a LOT of the night with terrible pain in her lower stomach. She would sleep/snooze for 10-20 minutes and then cry out and call for me, "Mommy? It hurts! It hurts so bad!" And then sleep and then cry out again. That went on for about 3 hours. I began wondering about her appendix or a UTI or a blockage in her intestines. Who has that much pain without something else going on?
The next day (day three) the pains slowed down and by 3pm we went for a walk. Then the doctor called and said she should go to hospital for urine testing and x-ray to make sure the pain is nothing more than CVS. At 5pm we dropped Colin off at our loving, generous, wonderful, sweet, kind, helpful cousin's house and went to do those tests. At 7pm we picked up one very happy little Colin and went home for bed for everyone. At 11pm Brian woke me up (I was in Ellie's room) and said both he and Colin had thrown up.
 |
| Our Walk. |
 |
| I liked the bench they chose. |
At first I felt relieved. 'Ahh! So it was the flu!' But eventually was back to wondering why didn't the medicine work for her? Why did it get so awful that we had to go to the ER? FOUR doses of meds that night for her and they did nothing, the ER fluids probably helped her from becoming more dehydrated but didn't fix it. Colin takes one pill and he doesn't puke again. When I finally came down with it early Friday morning, I took one pill and no puking. My poor baby girl has 4 doses that don't stop it. Scary, sad and confusing. I don't want the ER to be our new norm. In fact, if I never have to see her that miserable again I'd be fine with that! Poor Ellie.
Glass Half Full
But, as far as we know we are not one of the poor families who are in and out of the ER and/or hospitalized on a regular basis. Going through last week gives me so much more appreciation for the families who haven't found medicine to stop the vomiting.
I. CAN. NOT. IMAGINE.
I really can't. Personally, I can't stand throwing up once or twice. I literally dread puking. So I honestly can't imagine what it would be like to puke so much that you end up in the ER... and then to know that you will likely have to do it all over again in a month or two or three. I have spent a good amount of my time and energy in the last few days thinking, wondering and praying that this awful episode was just a fluke, spawned by the horrible stomach flu and that her body just couldn't handle it. I feel selfish saying that since now I am friends, or at least phone call/facebook/e-mail friends with a few families who have hospital visits as a regular occurrence for their cvs kids. But, it's a selfish desire that I think we all share. Of course, of course we all want it to end and never happen again. That's why we are in this fight together. That's why it has been so helpful and encouraging to make other CVS friends online. We ask questions, give suggestions, feel bad for each other, and know just how it feels to watch your kiddo so miserable and know that you can't make it stop.
I have also thought a lot about kids with other horrible diseases this week, life-threatening diseases that land them in the hospital all the time. Little kids who have to do chemo and I bet feel the way Ellie feels during an episode but on quite a regular basis. I think getting a little peek into that world has made me even more sad for those families. Brian has a good friend from high school who has a little boy with brain cancer. I think of them so often and this past week I thought of them a LOT.
So in many ways we are so lucky. This is not a life-threatening illness and it can generally be managed. In-between these hard spells Ellie has a totally average, normal day-to-day existence. Normally Ellie's medicine works wonders and I'm praying that hasn't changed, but if it has, we are connected to great doctors and specialists who will try hard to figure out how to make it better. We are so lucky that Ellie, while generally a silly, squealing, whining, girly 7-year-old can also be wicked, wicked brave and tough. She is easily the most positive person I know and bounces back into normal life with lots of smiles and hugs and a "what's next?" attitude. And, we are so lucky to have so many family and friends who don't mind my scared text messages even at 3am and don't mind my LONG LONG rambling updates like this one! We are lucky to have my Mom who has a strong bond with Ellie and wants to know every detail and would drive down in a heartbeat if we really needed help. And we are lucky to have family (cousins) just around the corner who love us so well that they check on us each day during our hard times and don't hate us when we pass the flu on to their family (So, so sorry!!).
We have so much more good in our lives than struggles...but let me tell you, at 5am in the ER with your little one in such total misery-- it's easy to forget that "this too shall pass."
 |
| At the hospital doing tests. Ellie said, "It's nice to get out of the house, even if it is to go potty in a cup." |
Mid-February to Mid-March: No Sleep.
I meant to write a part-two from the last blog post but things happened and none of those things included blogging.
I had been wondering about the amitriptyline, as I said in my last post. Eleanor the Great had been so well for so long (3 months) that it occurred to me that we might never know if/when we should take her off the medicine. But then... Starting somewhere in the middle of February her sleep began to take a dive. It started by just a bit of sleep disruption here or there and continued to get worse and worse. By the third week the child was NOT sleeping. I was up with her for 2-4 hours each night. At first she was able to get to school regardless of her bad nights, but by the third week she had a bad cold and wasn't sleeping and missed a whole week of school. Somewhere in the middle of zero-sleep-newborn-nights hell, it hit me that maybe because she was growing her medicine was not enough anymore. Quite the opposite than I had been thinking. Dr. Li, affectionately known as The Wizard of CVS on this blog, he mentioned last August that Ellie could be on a much higher dose of amitriptyline but we didn't change it at that time because it seemed to be doing it's job.
Sure enough, 4-5 nights after we doubled her dosage she began sleeping through the nights again. Ugh. Those were a long 3 weeks! But nothing like the week we just had...
I had been wondering about the amitriptyline, as I said in my last post. Eleanor the Great had been so well for so long (3 months) that it occurred to me that we might never know if/when we should take her off the medicine. But then... Starting somewhere in the middle of February her sleep began to take a dive. It started by just a bit of sleep disruption here or there and continued to get worse and worse. By the third week the child was NOT sleeping. I was up with her for 2-4 hours each night. At first she was able to get to school regardless of her bad nights, but by the third week she had a bad cold and wasn't sleeping and missed a whole week of school. Somewhere in the middle of zero-sleep-newborn-nights hell, it hit me that maybe because she was growing her medicine was not enough anymore. Quite the opposite than I had been thinking. Dr. Li, affectionately known as The Wizard of CVS on this blog, he mentioned last August that Ellie could be on a much higher dose of amitriptyline but we didn't change it at that time because it seemed to be doing it's job.
Sure enough, 4-5 nights after we doubled her dosage she began sleeping through the nights again. Ugh. Those were a long 3 weeks! But nothing like the week we just had...
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