Okay, so here another installment of Beanie's past history...I'll get up to current events soon, I promise. Anyhow, Beanie had a scan (MRI) of his brain to see it there were any structural problems causing his poor weight gain and low muscle tone in his neck and torso. The MRI came back inconclusive. So, back to Dr. Doom we went, to hear what she had to say, which was...not much. She suggested we have him evaluated by the local Regional Center (http://www.dds.ca.gov/RC/RCSvs.cfm) for possible early intervention services. [from the Regional Centers' Early Start Program page: "Families whose infants or toddlers have or are at risk for developmental delay or disability can receive an "Early Start" in the State of California. Teams of service coordinators, healthcare providers, early intervention specialists, therapists, and parent resource specialists can evaluate and assess an infant or toddler and provide appropriate early intervention services to children eligible for California's Early Intervention system of services."]
She explained that, if they approved him for services like physical therapy, it would be at no charge to me, and since it certainly would not do him any harm, and might be very beneficial to him, why not take it? That seemed reasonable and non-invasive, so I set up an interview.
He was assessed by a developmental specialist, and initially approved for home-based Early Intervention and Physical Therapy services. Shortly thereafter, we set up appointments with an early intervention specialist and a physical therapist, both of whom would come to our home once a week (separately) and work with Beanie.
The PT would do things like have him lie on his tummy on an inflatable ball and work with a toy set about head-high on a box, so that he had to lift up his head and shoulders to play (thus strengthening his neck and upper back). The EI person (the delightful Karla, who would be with us for well over a year and become a family friend) worked with him on a variety of tasks exploring sensory, fine-motor, gross-motor and cognitive skills, such as having him reach into a bag to feel different textures, or pulling on a ribbon to get a toy, or trying to grab a toy held out to him, all the while narrating her actions to develop language skills. Both the therapists would offer suggestions for things to do with him in between visits, to aid in developing his weak areas. It felt good to finally be working on treating his deficits, even though we still had no specific diagnosis. So on our journey went...
Showing posts with label Dr. Doom. Show all posts
Showing posts with label Dr. Doom. Show all posts
Saturday, April 19, 2008
Sunday, April 13, 2008
Beanie's story, continued... So we went off to the pediatric neurologist to try to figure out what was keeping baby Beanie for gaining enough weight. He was about 3 months old. Dr. C checked him over, ordered a few tests, and reviewed his chart. She noted that his head circumference was normal at birth, but had failed to keep growing as expected. His weight was in the 2nd percentile for his age (meaning 98 % of boys his age weighted more than he did), and so was his head circ. His height was around 40th percentile, which was okay. The head circumference might mean he just had a naturally small head, which is not a problem, or it could be that his brain had simply stopped growing, she explained matter-of-factly. Okay, not what mommy wants to hear about her precious boy. If he had simply stopped developing, there would be nothing we could do except make him comfortable and wait (for him to die, was the clear unspoken end of that sentence). She explained this in the same tones you might use to tell someone their child had a slight overbite, but would probably grow out of it...as if is were nothing terribly worrisome, just an interesting case.
I went out to my car with Beanie and held him on my lap and just wept. I cried until I had no more tears. Then a song came into my head..."I don't know much, but I know I love you, and that may be all I need to know." And I sang these words softly to him as he nursed there in the car, and told him I loved him, and hoped he would be okay.
A mom friend of mine who is also a doctor once remarked, "the LAST thing you want your child to be to a doctor is an 'interesting case'!" She had also had taken her child to Dr. C, because her daughter had her head pulled to one side as an infant. Dr. C told her that, among other possibilities, it could be that her daughter's brain was atrophying on one side. "Oh, Dr. C?" she told me, "we call her 'Dr. Doom'!!" Her daughter turned out to be fine, suffering from nothing more serious than tight neck muscles, and that made me feel better.
Anyway, nothing conclusive was revealed in any of the tests Dr. C ran, so she suggested an MRI of his brain, to look for any abnormalities. So we scheduled one at UCLA hospital. It took multiple phone calls to get it approved by my insurance and then scheduled. Now, UCLA has two hospital campuses. The main one is on the UCLA campus in Westwood, and the other is UCLA-Santa Monica, which is a smaller hospital in Santa Monica that UCLA took over a few years ago. When Beanie was hospitalized at 2 weeks old for breathing problems, is was at UCLA-Santa Monica. So I got myself scheduled for the test at UCLA-SM, or so I thought.
The instructions for preparing for the test included no food for 12 hours before--this is NOT fun for a 4-month-old (which was his age by the time of the test), who normally eats every few hours during the day. Since one has to be perfectly still for the test to work, babies have to be sedated ("asleep" under anesthesia) during the test, and fasting is the normal protocol for this.
Beanie was breastfed, but I was also supplementing him with formula to try to put on weight. He had never had anything else at this point, but the nurses said he could have clear juice up until 4 hours before the test, so I got some white grape juice to give him, just so the poor baby could have a little sustenance during the night. His test was scheduled for 8 in the morning, so we stopped all food except juice after 8 pm the night before. After a not too restful night with a cranky, hungry baby (not even juice past 4 am), we set off for the hospital in Santa Monica. After some confusion (the first information desk clerk sent us to the wrong floor), we finally found the MRI center...only to find they had no record of our appointment. Beanie was screaming (he was hungry, poor little guy), and no one seemed to know what to do with us. A supervisor was consulted, and she thought perhaps we were at the wrong hospital. She explained that most pediatric sedation MRI's were done at the main UCLA hospital campus in Westwood. Through all of the scheduling, I had always thought we were talking about UCLA-SM, since that's where I had been referred by my insurance, that's what my authorization paperwork said, and that's what I had asked for when i fist made the appointment. BUT somehow, I had, in fact been scheduled for UCLA-Westwood, as we determined after a few crazy phone calls (a screaming baby made it hard to hear, too). So now I was in Santa Monica, while my scheduled appointment time came and went in Westwood. Westwood told me to come over as soon as possible and they would work me in.
Now, if you know LA westside traffic, you know that getting from Santa Monica to the UCLA campus, though not far in miles, is a long way in traffic, but off we went. Beanie was NOT amused by being loaded back into the car seat, with still no food. I drove to UCLA, navigated the parking labyrinth, picked up the baby in the carrier seat, and hiked off to the MRI suite (a long walk from the parking lot, I can tell you that much).
Since we were about an hour late for our appointment time, they had taken another patient ahead of us, and we had to wait. So I paced the small waiting room with my screaming child, now nearly apoplectic with anger and hunger. I'm sure he could not figure out why his beloved breastmilk was not being offered. He must have felt frustrated beyond belief..."I am telling you people the only way I know how that I AM HUNGRY; why won't you feed me already???" All told we waited almost an hour for him to be called in, as I tried every non-food form of comfort I could think of (hugs, singing, bouncing, rocking). Other adult patients waiting felt so sorry for him--THEY wouldn't like having to fast for 12 hours, and they couldn't imagine what it was like for a baby. By now it was going on 14 hours with out any food for my poor little guy.
Finally they called his name, and we followed a nurse back to the ante-room outside the MRI chamber. There they inserted and IV line into his leg to administer the sedation, which did nothing to improve his mood, believe me.
Then they make you sign a waiver stating that you understand the risk of anesthesia (which include, "death", of course). I signed, but it didn't sit easily with me. Unfortunately, they had to take him into the room and get him in place before sedating him, and I was not allowed to come along, so now, on top of my (to his point of view) betrayal by suddenly deciding not to feed him, I was handing him over to strangers who had already caused him pain (the IV line), and who would take him into a cold, sterile room with a big, scary machine, and away from Mommy. I felt heartless.
[To be continued...]
I went out to my car with Beanie and held him on my lap and just wept. I cried until I had no more tears. Then a song came into my head..."I don't know much, but I know I love you, and that may be all I need to know." And I sang these words softly to him as he nursed there in the car, and told him I loved him, and hoped he would be okay.
A mom friend of mine who is also a doctor once remarked, "the LAST thing you want your child to be to a doctor is an 'interesting case'!" She had also had taken her child to Dr. C, because her daughter had her head pulled to one side as an infant. Dr. C told her that, among other possibilities, it could be that her daughter's brain was atrophying on one side. "Oh, Dr. C?" she told me, "we call her 'Dr. Doom'!!" Her daughter turned out to be fine, suffering from nothing more serious than tight neck muscles, and that made me feel better.
Anyway, nothing conclusive was revealed in any of the tests Dr. C ran, so she suggested an MRI of his brain, to look for any abnormalities. So we scheduled one at UCLA hospital. It took multiple phone calls to get it approved by my insurance and then scheduled. Now, UCLA has two hospital campuses. The main one is on the UCLA campus in Westwood, and the other is UCLA-Santa Monica, which is a smaller hospital in Santa Monica that UCLA took over a few years ago. When Beanie was hospitalized at 2 weeks old for breathing problems, is was at UCLA-Santa Monica. So I got myself scheduled for the test at UCLA-SM, or so I thought.
The instructions for preparing for the test included no food for 12 hours before--this is NOT fun for a 4-month-old (which was his age by the time of the test), who normally eats every few hours during the day. Since one has to be perfectly still for the test to work, babies have to be sedated ("asleep" under anesthesia) during the test, and fasting is the normal protocol for this.
Beanie was breastfed, but I was also supplementing him with formula to try to put on weight. He had never had anything else at this point, but the nurses said he could have clear juice up until 4 hours before the test, so I got some white grape juice to give him, just so the poor baby could have a little sustenance during the night. His test was scheduled for 8 in the morning, so we stopped all food except juice after 8 pm the night before. After a not too restful night with a cranky, hungry baby (not even juice past 4 am), we set off for the hospital in Santa Monica. After some confusion (the first information desk clerk sent us to the wrong floor), we finally found the MRI center...only to find they had no record of our appointment. Beanie was screaming (he was hungry, poor little guy), and no one seemed to know what to do with us. A supervisor was consulted, and she thought perhaps we were at the wrong hospital. She explained that most pediatric sedation MRI's were done at the main UCLA hospital campus in Westwood. Through all of the scheduling, I had always thought we were talking about UCLA-SM, since that's where I had been referred by my insurance, that's what my authorization paperwork said, and that's what I had asked for when i fist made the appointment. BUT somehow, I had, in fact been scheduled for UCLA-Westwood, as we determined after a few crazy phone calls (a screaming baby made it hard to hear, too). So now I was in Santa Monica, while my scheduled appointment time came and went in Westwood. Westwood told me to come over as soon as possible and they would work me in.
Now, if you know LA westside traffic, you know that getting from Santa Monica to the UCLA campus, though not far in miles, is a long way in traffic, but off we went. Beanie was NOT amused by being loaded back into the car seat, with still no food. I drove to UCLA, navigated the parking labyrinth, picked up the baby in the carrier seat, and hiked off to the MRI suite (a long walk from the parking lot, I can tell you that much).
Since we were about an hour late for our appointment time, they had taken another patient ahead of us, and we had to wait. So I paced the small waiting room with my screaming child, now nearly apoplectic with anger and hunger. I'm sure he could not figure out why his beloved breastmilk was not being offered. He must have felt frustrated beyond belief..."I am telling you people the only way I know how that I AM HUNGRY; why won't you feed me already???" All told we waited almost an hour for him to be called in, as I tried every non-food form of comfort I could think of (hugs, singing, bouncing, rocking). Other adult patients waiting felt so sorry for him--THEY wouldn't like having to fast for 12 hours, and they couldn't imagine what it was like for a baby. By now it was going on 14 hours with out any food for my poor little guy.
Finally they called his name, and we followed a nurse back to the ante-room outside the MRI chamber. There they inserted and IV line into his leg to administer the sedation, which did nothing to improve his mood, believe me.
Then they make you sign a waiver stating that you understand the risk of anesthesia (which include, "death", of course). I signed, but it didn't sit easily with me. Unfortunately, they had to take him into the room and get him in place before sedating him, and I was not allowed to come along, so now, on top of my (to his point of view) betrayal by suddenly deciding not to feed him, I was handing him over to strangers who had already caused him pain (the IV line), and who would take him into a cold, sterile room with a big, scary machine, and away from Mommy. I felt heartless.
[To be continued...]
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