First the main headline: the test results were normal. If that's what you were curious about, I've saved you the trouble of reading more than you wanted. :)
Now the nitty gritty... We had a check in time of 8 am, scheduled procedure of 9:15 am. Carver could eat normally up to 7 pm the night before, which was fine. We always finish dinner by then. He had water at bedtime and then that was it until after the endoscopy. I was a little worried about him getting grouchy in the morning, but he did fine with it. He got up at 5, but Daddy got him to get back in bed and slept til we woke him up to leave just before 7. I made it downtown with almost no traffic whatsoever. We checked in at 3 desks, got bracelets for him and his dog (and I totally blanked when she asked my social security number - embarrassing!) and waited. And waited. We saw a cool octopus painted on a wall, a neat bench that looked like a Native American canoe (boat to Carver) and mostly walked around touching everything. Carver was SUPER excited to be there. He'd heard my explanation to the girls and immediately latched on to sleeping at the hospital. He was also looking forward to juice afterwards since I'm cheap and never buy it anymore.
Carver was about out of fun things to do when the nurse called us. We followed her back to an exam room. She did his blood pressure, temperature, height and weight, tried to get the oxygen reader on his finger but he wouldn't cooperate for that one. He got to change into a hospital gown on top and funny socks with "stickers" (non skid paint) on the bottom. In this room he got to watch Diego and Dora, which was nice. After another while waiting in here and being prepped on the schedule two -three different times, I signed another consent, met the anesthesiologist who took us back to the operating room.
Whoa. It was a big stark room with a lot of equipment and at least 5 adults. Carver and I were both intimidated. He just stood there and I tried not to look at stuff that might be scary. He climbed up onto the bed with some help and then refused to wear the mask. In all my briefing at the hospital and before hand, no one had bothered to tell me that his inital anesthesia would be laughing gas through a mask. I would've prepped him and it might have helped. But maybe it wouldn't have. I wish I would've had the opportunity and that was my only complaint for the day. They tried to make it fun by showing him that breathing in the mask would make a balloon inflate. Nice try!! In the end, all of us held him down and he cried into the mask. I wiped his tears, told him it was okay and watched his eyes roll back and his body relax. It only took 15 seconds or so, I'm sure. Crying probably helped. But it was sad to watch. We moved him to a good position on the bed and they ushered me out. I didn't want to be there, but it was a tender time to leave him. I probably looked worried because the nurse walking me out to the waiting room asked if I was okay. Or maybe most parents have a hard time with it. I didn't cry, but it was easy to imagine the tears coming!
I waited a few minutes, remembered that I knew things would be fine and picked up the book I brought to pass the time. I jumped at every door creak, but it was nice to think about something else while I waited. I bet it wasn't 20 minutes before the doctor came out with pictures of Carver's stomach, small intestine (right?), and esophogas. All normal. They were very pink and squishy looking. Maybe I'll scan the picture for you. Or maybe not. I'm a liberal arts major and body stuff can kinda creep me out sometimes. A few more minutes passed and the nurses came to tell me he was waking up.
He was in a new room in a small hospital bed with railings, not a crib though. He had those heart monitor stickers on, an IV on the top of his foot and was sitting up without his shirt on. He'd wanted it off in the operating room. The nurses just loved him because he woke up so suddenly. They told me he turned onto his stomach with his bum in the air and pulled his Buzz and Woody blanket over his head. He peeked out and said, "hi." What a cutie he can be! He was dizzy and still a little groggy when I came in, but he drank some apple juice and nibbled on an orange popsicle. He wasn't keen on taking out the IV, but we got it out. He really was a cutie. Several times he saw a mask hanging by the cords and whatnot and said, "all done balloon." But he didn't freak out and I promised the balloon was all done. No more mask, Carver. He wanted to keep his pjs bottoms on, but I put his t-shirt on and his crocs and he walked out with me. We sat on the boat bench and he ate his fruit snacks then I carried him to the van. And home we went!
My friend Caroline had his sisters all morning so I picked them up and made it home for some Kipper time before lunch. Not too bad! I expected him to be dizzy, but he really wasn't. He sure was when he got tubes a couple years ago! He didn't ever take a nap. I suppose even a medically induced nap counts as a nap. Darn! He's happy as a clam, good as new - well, more like every bit as grumpy as normal and getting into mischief everywhere I turn. Did I mention he likes to go outside and turn the sprinklers on right now!?
There are still biopsy results to come. Probably a week, maybe two. I expect that they'll be normal, as well. And that's fine with me! Another problem or decision sounds like a lot to deal with right now. I think they also test for allergies, which will be interesting since we have a strong family history of allergies.
Meanwhile, I have the assurance that proceeding with treatment for the rumination is all we can do. And since it seems to be a hard row to hoe, I need every bit of assurance I can get.
Monday, June 15, 2009
Wednesday, June 10, 2009
Gastroenterology
That's a mouthful, huh? And why is it called GI for short? Where's the I?! I'm assuming it's for intestinal? Anyway...
The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.
It's not what I wanted to hear.
It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?
Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.
Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!
Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.
The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.
I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.
The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.
I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.
The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.
It's not what I wanted to hear.
It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?
Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.
Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!
Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.
The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.
I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.
The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.
I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.
Thursday, June 4, 2009
Lesson #4: Mother knows best
Next week Carver will see a pediatric gastroenterologist at Children's Hospital to get to the bottom of his regurgitation. He's been "spitting up" continually since he was an infant. It was curdly milk for a while, lately it's been more acidic. I'll spare you too many details, but his chin is raw from the drool and occasionally has just terrible breath. He has also been addicted to milk/cheese/yogurt his whole life - which I think is his way to soothe his stomach. Doctors have REPEATEDLY blown me off - many different doctors. Last time she assured me that reflux would hurt, that the main symptom is stomach upset. Well, Carver's not going to be able to communicate that to me even if he realized that his stomach hurt - and I'm not sure he'd know. So I finally decided that as his mother, it's time to refer myself to a specialist. Of course, I called and made that oh-so-helpful pediatrician do the paperwork. I've talked to friends in the medical field and got some invaluable tips about other possibilities, procedures and ideas. I'm determined to see this through. If it means I break down and cry to the GI doctor next week, I'm not leaving without a plan.
It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.
I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!
It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.
I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!
Thursday, May 28, 2009
Lesson #3: Love
Awhile back, I was talking to another mom who confessed that she'd always been worried about having a special needs child because she was afraid she wouldn't love them the same. I really appreciated her honesty and the positive context of our conversation. It brought this lesson into focus for me.
When Carver was born.... no, before he was born... I loved him. I loved him because he was mine, because our lives are intertwined from the beginning and connected forever. When he was born, I got to meet this little guy I already loved and it just grew from there. Now, my experience with Carver isn't the same as someone who knows during pregnancy that their unborn baby has disabilities. I can't pretend to know what that's like. But I have to imagine that you still had time to love them first. That, for most of us, we wanted to be pregnant and we wanted that baby. That is where the love all starts. So no matter what happened, what disappointments were in store, we began with love.
It's a very emotional journey to diagnose disabilities like Carver's. I felt a lot of worry at first, those typical comparisons, some jealousy of other mom's little boys, fear of the future. I had to put all that on the table to get him evaluated, to be ready to face hard things. But I loved him too much NOT to. I wanted him to have help and I needed it, too.
It's a different kind of love to care for Carver than for my girls. I feel more frustrated, more impatient and more inadequate as Carver's mom - absolutely! I don't love him LESS for those feelings. I also feel more protective, more invested, and more sure that he needs me. It creates a different kind of love. A fiercer emotion, perhaps. But I know for sure that it isn't more/less than the other sorts of mother-love I feel for my girls.
I love that quote I just put on the sidebar:
“When I approach a child, he inspires in me two sentiments; tenderness for what he is, and respect for what he may become."
That is just beautiful to me! And it's so true for children with disabilities. I love Carver for what he is now, for how far he's come and for all that he teaches me right now. And I certainly hope for his future and what he will become. I'm so grateful for other people that love him, too - his bus drivers, his preschool teachers, therapists, his sweet little friends and mine.
I love his smile, how he dunks his head in the pool, how excited he gets about simple things, how he's starting to fill in words to songs I've sung him again and again, how he snuggles in bed with me, the way he jumps and runs, the way he hugs me and wants to be with me. I love him fiercely, always have and always will.
And you know what? Having Carver has taught me to love on a new level. Those kids on his preschool bus have such a special place in my heart. I want to know their names and their stories and I'm just cheering for them because I know that they have challenges just like Carver. When one little boy started telling me all about the bus stop sign he could see out his window, I didn't understand a single word he said but I knew what he meant. And I loved him for telling me about it. It's easy to see the innocent in children with special needs, but I think that what really happens is that loving them purifies US.
When Carver was born.... no, before he was born... I loved him. I loved him because he was mine, because our lives are intertwined from the beginning and connected forever. When he was born, I got to meet this little guy I already loved and it just grew from there. Now, my experience with Carver isn't the same as someone who knows during pregnancy that their unborn baby has disabilities. I can't pretend to know what that's like. But I have to imagine that you still had time to love them first. That, for most of us, we wanted to be pregnant and we wanted that baby. That is where the love all starts. So no matter what happened, what disappointments were in store, we began with love.
It's a very emotional journey to diagnose disabilities like Carver's. I felt a lot of worry at first, those typical comparisons, some jealousy of other mom's little boys, fear of the future. I had to put all that on the table to get him evaluated, to be ready to face hard things. But I loved him too much NOT to. I wanted him to have help and I needed it, too.
It's a different kind of love to care for Carver than for my girls. I feel more frustrated, more impatient and more inadequate as Carver's mom - absolutely! I don't love him LESS for those feelings. I also feel more protective, more invested, and more sure that he needs me. It creates a different kind of love. A fiercer emotion, perhaps. But I know for sure that it isn't more/less than the other sorts of mother-love I feel for my girls.
I love that quote I just put on the sidebar:
“When I approach a child, he inspires in me two sentiments; tenderness for what he is, and respect for what he may become."
That is just beautiful to me! And it's so true for children with disabilities. I love Carver for what he is now, for how far he's come and for all that he teaches me right now. And I certainly hope for his future and what he will become. I'm so grateful for other people that love him, too - his bus drivers, his preschool teachers, therapists, his sweet little friends and mine.
I love his smile, how he dunks his head in the pool, how excited he gets about simple things, how he's starting to fill in words to songs I've sung him again and again, how he snuggles in bed with me, the way he jumps and runs, the way he hugs me and wants to be with me. I love him fiercely, always have and always will.
And you know what? Having Carver has taught me to love on a new level. Those kids on his preschool bus have such a special place in my heart. I want to know their names and their stories and I'm just cheering for them because I know that they have challenges just like Carver. When one little boy started telling me all about the bus stop sign he could see out his window, I didn't understand a single word he said but I knew what he meant. And I loved him for telling me about it. It's easy to see the innocent in children with special needs, but I think that what really happens is that loving them purifies US.
Just for fun
Doesn't Carver have the coolest bus driver? She lets him pretend to drive the bus when they have an extra minute at school. This particular morning, they were running early and let me take pictures of it. Carver LOVES vehicles and the bus was his favorite part of school for a long time. :)
I love this one. My view every morning as my little man heads to school. Awww....Tuesday, May 26, 2009
Oh, dear
Tonight Derek came home and as I hugged him, noticed a funny smell. "Have you been painting your nails on the way home from work?" I teased. Then it clicked - it was coming from upstairs. DANG IT!!! I ran up to the computer desk where I remembered instantly I'd left my tightly shut Nail Envy.
Serves me right for not putting back in the bathroom cupboard, but Carver opened it up and let it leak on the carpet, drip on the computer keyboard in a few places (the "zx" is what you get if you press Z and the TAB feels a little weird, too) and he must have wiped some on his hair because there is a VERY crusty streak over his ear. Someday, someday, SOMEDAY he's going to stop doing stuff like this and I'll look back and think it's funny, right?
Serves me right for not putting back in the bathroom cupboard, but Carver opened it up and let it leak on the carpet, drip on the computer keyboard in a few places (the "zx" is what you get if you press Z and the TAB feels a little weird, too) and he must have wiped some on his hair because there is a VERY crusty streak over his ear. Someday, someday, SOMEDAY he's going to stop doing stuff like this and I'll look back and think it's funny, right?
Wednesday, May 13, 2009
Today I overheard one mom tell another mom about the difficult girl on her daughter's softball team - a group of 3rd graders. She described the way she never paid attention to the game, how she wrote in the dirt, made mud and played in it, couldn't follow directions. She head butted other girls when they were in their batting helmets, etc... Her main complaint was that it was an annoyance to the team, she couldn't believe that this girl's mom didn't intervene. From her perspective, the mom didn't seem to notice a bit. She commented that she must be a "nightmare" in the classroom. She said, with a mixed degree of relief and smugness, that next year the team is based on skill and she's sure THAT girl won't be moving up.
I kept quiet. I didn't know what to say. But inside, I had plenty of things to say to myself.
First of all, this girl needs help. I hope that her mother really isn't as oblivious as observed. Those behaviors are obviously NOT typical of 3rd graders. Life is going to keep getting more difficult, I am a huge believer in early intervention. I hurt for her, thinking of the many who watch her on the field and don't understand. I hurt for the mother they blame.
I've considered the dilemma of group sports for these very reasons. Swimming would be incredibly therapeutic for Carver, but a group lesson situation would be... um, difficult. He'd have a hard time following directions, need more attention than other kids and their parents would be resentful. How would I feel in a similar situation? Like I'd paid a lot for a class and expected to have equal attention from a teacher. Private lessons would be ideal, but terribly expensive and out of the question for us right now. Soccer? He'd love a turn to play, but again the interactions would be stressful to him, it would be so hard. But on the other hand, when he's ready, a team experience would be wonderful for him, physical activity tremendously helpful.
I realize not everyone has first hand experience with developmental delays and disabilities. They don't understand the balance between concern for everyone else's convenience and our children's need for integration and experience. I get that. I am incredibly grateful that my girls will have understanding of disabilities and, hopefully, grow up with compassion for others around them. It's certainly difficult to have Carver as a brother and they aren't usually saintly about it. But I hope that as they mature, what'll stay with them is that they love him anyway and that they are willing to be on his team and anyone else's who needs a cheering section.
I kept quiet. I didn't know what to say. But inside, I had plenty of things to say to myself.
First of all, this girl needs help. I hope that her mother really isn't as oblivious as observed. Those behaviors are obviously NOT typical of 3rd graders. Life is going to keep getting more difficult, I am a huge believer in early intervention. I hurt for her, thinking of the many who watch her on the field and don't understand. I hurt for the mother they blame.
I've considered the dilemma of group sports for these very reasons. Swimming would be incredibly therapeutic for Carver, but a group lesson situation would be... um, difficult. He'd have a hard time following directions, need more attention than other kids and their parents would be resentful. How would I feel in a similar situation? Like I'd paid a lot for a class and expected to have equal attention from a teacher. Private lessons would be ideal, but terribly expensive and out of the question for us right now. Soccer? He'd love a turn to play, but again the interactions would be stressful to him, it would be so hard. But on the other hand, when he's ready, a team experience would be wonderful for him, physical activity tremendously helpful.
I realize not everyone has first hand experience with developmental delays and disabilities. They don't understand the balance between concern for everyone else's convenience and our children's need for integration and experience. I get that. I am incredibly grateful that my girls will have understanding of disabilities and, hopefully, grow up with compassion for others around them. It's certainly difficult to have Carver as a brother and they aren't usually saintly about it. But I hope that as they mature, what'll stay with them is that they love him anyway and that they are willing to be on his team and anyone else's who needs a cheering section.
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