Monday, June 18, 2007
Friday, June 15, 2007
MRI Results
CLEAN!
Nothing short of a miracle! Barb (the nurse practitioner from
yesterday who did his physical and "diagnosed" the toy in his belly)
called this morning as soon as she got in - knowing how worried we
were.
No heart problems, no lung problems, no heart defects, no
gentio-urinary defects - nadda. His vertebrae are all intact,
correctly shaped, and his spinal cord is enclosed and the correct
size.
We are SO relieved, and just high today with this news.
Monday we will touch base with the surgeon again and schedule an
appointment to figure out what his surgical plan of action will be to
treat his scoliosis. But, this is just the best possible news we could
have gotten today and we are so blessed.
Thank you all - tremendously - for your prayers and well-wishes these
past 11 days. We appreciate it all so much and could not get through
this without every one of you.
Much love,
John, Sandi and perfect little boy Jackson.
Nothing short of a miracle! Barb (the nurse practitioner from
yesterday who did his physical and "diagnosed" the toy in his belly)
called this morning as soon as she got in - knowing how worried we
were.
No heart problems, no lung problems, no heart defects, no
gentio-urinary defects - nadda. His vertebrae are all intact,
correctly shaped, and his spinal cord is enclosed and the correct
size.
We are SO relieved, and just high today with this news.
Monday we will touch base with the surgeon again and schedule an
appointment to figure out what his surgical plan of action will be to
treat his scoliosis. But, this is just the best possible news we could
have gotten today and we are so blessed.
Thank you all - tremendously - for your prayers and well-wishes these
past 11 days. We appreciate it all so much and could not get through
this without every one of you.
Much love,
John, Sandi and perfect little boy Jackson.
Thursday, June 14, 2007
MRI
This morning at 4:45 the alarm went off so that I could feed Jackson one last time. We brought a cup of water with us in the car, and he sipped a few teaspoons worth up until 8. He seemed content, though, and wasn't complaining. After dropping off the girls, we arrived at the hospital around 9:30 this morning. The traffic wasn't nearly as bad as we anticipated.
We registered and were told to sit in a waiting area, and that we were a little early so they weren't quite ready for us. Twenty minutes later the nurse walked out to escort us to the ambulatory procedure center. We stopped at the scale first, and Jackson had gained weight just since last week (23 pounds, 8ozs). The room was divided into curtained exam areas that could be closed for privacy. We were in "room" 8. There was a glider, an arm chair, and a smaller-scale hospital bed. It was narrower than an adult one, but just as long.
We sat in the room and Jackson seemed grumpy but easily entertained by the nurses. They got some medical information on him, asked about his last meals and whether or not he had any teeth. They had to get his blood pressure, pulse, and temperature. She said that his feet and hands looked a little chubby for an easy stick, and that they might need to gas him down first. We instantly felt like weight had lifted, and she said she'd need to talk to the anesthesiologist since it's ultimately up to him, but that she saw no reason why they couldn't get him to sleep before they did the IVs. She added that one of us would be able to be with im when he went to sleep, so I volunteered John. I had been denying him nursing all morning and didn't want him to have any more fear or negativity associated with being around mom.
Next, they needed a physical on him that was within the last 30 days, so a nurse practitioner came and evaluated him briefly (declaring him perfect). He sat still even for his least favorite part - the ear check. She was from the ortho clinic, where they ordered the MRI, and was incredibly kind and gentle with him.
The anesthesia nurse came in and was amazing. She wasn't able to get her breastfed son to take a cup until 15 months, so she understood our plight. We chatted about our kids, and she got more background information. We talked about risks. I asked for all of it, what could happen, what the chances are, and what to expect. She was totally honest and I respected her so much more for it. It was a huge relief to hear that since he didn't have heart and lung issues, and was a healthy baby without any upper respiratory symptoms, the chances of anything going wrong were very slim. We talked about what would happen if he had a breathing problem (the most common adverse reaction) and she said sometimes they have to put in a little breathing tube because when babies wake up they tend to freak out and gasp, which can cause them to spasm. Having all this information made me prepared for what could happen, and I knew that no matter what he was in good hands. We couldn't have asked for him to be in a better hospital if something did go wrong.
The clock was ticking slowly and the original nurse came in to let us know that they MRI scan was running late and we wouldn't be going back until 5 or 10 after. I had been avoiding holding Jack, thinking if I did he'd want to eat. But, by 5 after he was getting more worked up and just wanted mom. I snuggled him against my chest and softly whispered his favorite lullaby in his ear. He was trying so hard to go to sleep, but he was so hungry his tummy just wouldn't let him. I kept walking him around, rocking him, singing our song. The last twenty minutes seemed like an eternity. Nurses filled the bed with electronic toys and we desperately tried to keep him happy.
Finally, at 11:25 they came in to let us know that it was our time. The anesthesiologist was a handsome man with dark skin and warm eyes. His accent made me think of the tropics or warmer climates. He shook our hands and said a soft hello to Jackson. He was gentle and kind - not quite old enough to be grandfatherly, but similar in disposition. He agreed that Jackson could be gassed down first, and explained the procedure one more time. He said that they'd walk back, put a small mask on Jackson, and within a minute he would fall asleep. Then they'd get the IV in either his hand or his foot and start the medicine to put him under. The MRI would last anywhere from 30 minutes to an hour, depending on how many pictures they needed. Then they'd bring him back to the room and page us so that we could be there as he was waking up. We were so relieved to know he wouldn't be without us for a moment.
I held my boy that last minute, finished the last line of our lullaby, "When you wake, I'll be there to hold you close like teddy bear" and kissed his head. I told him I loved him and then passed him to Daddy. He was crying, hungry, so tired. I saw his head peeking over John's shoulder as they walked down the hallway. I smiled and waved.
John was back within a minute. Jack had laid down on the table and started crying harder. They put the tiny mask over his face and the doctor said crying is good - they have to breathe when they cry and the more they breathe the faster the medicine works. He fell asleep quickly - within thirty seconds - and the anesthesiologist asked if John wanted to give him a little kiss before he left the room. He did, and joined me back in the curtained area where we sat for a second, trying to just figure out what to do next.
Once we took a moment to breathe, we walked out toward the waiting area. It was down the hallway by the ortho clinic and down a hallway. It was quiet and lonely. One TV was on in the corner, just a bit too loud. It was empty. We sat for a minute, then decided that time would pass more slowly if we were sitting and decided to go downstairs to get lunch. Since he was taken back so late, it was already 11:30, and we knew we'd be hungry by the time we got out of there.
After we ate, we went upstairs to the gift shop. They had beanie babies, and Jack had been playing with the puppy the nurse in radiology gave him last week. We saw a larger puppy, smooshy soft and light blue, and had to get it for him. We sat nearby for another ten minutes or so, then grew impatient and walked down the hallway. We thought about sitting in the radiology waiting room that was almost adjacent to where Jack was, but instead stood in the hallway. It had been 70 minutes since he went back - surely they'd be done soon.
We looked up and the nurse spotted us - almost looking as if she was doing something wrong. She had Jack cradled in her arms, still sleeping from the anesthesia. He was in a diaper, wrapped in a scratchy white blanket, with a monitor hanging from his foot. She said that during the MRI they saw something in his belly and wanted to do a quick x-ray. She said it looked like a black mass and they wanted to know if he may have swallowed something. She added that they did end up having to stick him twice, but other than that he did great, and of course, didn't feel a thing. Jack was stretched out across her chest, his eyes fluttering, and he softly said a word I didn't understand.
We went to the same room we were in for his skull x-rays last week. He was still out from the anesthesia, but started grumping in his sleep. He was opening his eyes and arching his back, clearly unhappy about being naked and on the hard table. We braced him and they snapped two pictures. I held him in my arms for the first time in that room, and he didn't know who I was. He was completely out of it, pushing against my chest with his arms and kicking away with his knees. I passed him to John, who was able to get him calmed down.
When we got back to the APC they said I could go ahead and try to feed him. He didn't quite latch on, and didn't have a strong suction at all. He was still so sleepy and wasn't opening his eyes. He tried to nurse for about ten minutes, and eventually got stronger and more consistent. He drifted back to sleep and I passed him back to John about fifteen minutes later. The nurse came back with the discharge papers and said we could go as soon as we knew if he kept the breastmilk down, then she'd take out his IV in his foot. She said that the ordering doctor would have to let us know what they found in his belly, and John pressed - if it was something urgent, we wanted to know now before we went to pick up the girls and drove all the way home. They called the nurse practitioner down who did his physical earlier and she stopped by the room to let us know she'd go look at the x-rays right that second.
We sat, anxious, wondering what this black mass was in his belly. We worried and I kept reminding John that there was no sense in speculating until they came back in. She returned with a print out and handed it to me asking if I knew what it was. It looked like a doll earring - not sharp, but two balls on either end. It was a long, thin piece of metal right there in his intestines. She laughed and said he'd pass it in a day or two. We were relieved once again.
She left, and we sat in silence again with our sleeping boy. We watched his heart rate on the monitors and he would react when we talked to him. I finally got the idea of saying his sisters' names - knowing how much he loves them and lights up when they come into the room. I whispered, "Jackson - do you want to go home and see Jae Jae?" and he immediately started moving. It was unreal. He started opening his eyes and said "Jae Jae." I started saying each of his sisters' names, and he'd repeat them. I told him we got him a new doggie and he said "goggy" and "woo woo." He sat up, held his head up high, and looked like he'd just had the best sleep of his life. He held his new puppy, squealing "goggy" and "woo woo" and shaking it around. He was 100% back to his old self, smiling at the nurses and talking to us.
His nurse came back in to talk to him and said she could take out his IV now. I asked if I could nurse him while she did it, thinking it might hurt him. He didn't even flinch. He wasn't very hungry after getting IV fluids, but he was nursing as usual and his suction was strong again. We walked through the halls of the hospital thanking God for our amazing boy and the capable hands he was in, filled with calm and optimism for the things to come.
Here are our photos
We registered and were told to sit in a waiting area, and that we were a little early so they weren't quite ready for us. Twenty minutes later the nurse walked out to escort us to the ambulatory procedure center. We stopped at the scale first, and Jackson had gained weight just since last week (23 pounds, 8ozs). The room was divided into curtained exam areas that could be closed for privacy. We were in "room" 8. There was a glider, an arm chair, and a smaller-scale hospital bed. It was narrower than an adult one, but just as long.
We sat in the room and Jackson seemed grumpy but easily entertained by the nurses. They got some medical information on him, asked about his last meals and whether or not he had any teeth. They had to get his blood pressure, pulse, and temperature. She said that his feet and hands looked a little chubby for an easy stick, and that they might need to gas him down first. We instantly felt like weight had lifted, and she said she'd need to talk to the anesthesiologist since it's ultimately up to him, but that she saw no reason why they couldn't get him to sleep before they did the IVs. She added that one of us would be able to be with im when he went to sleep, so I volunteered John. I had been denying him nursing all morning and didn't want him to have any more fear or negativity associated with being around mom.
Next, they needed a physical on him that was within the last 30 days, so a nurse practitioner came and evaluated him briefly (declaring him perfect). He sat still even for his least favorite part - the ear check. She was from the ortho clinic, where they ordered the MRI, and was incredibly kind and gentle with him.
The anesthesia nurse came in and was amazing. She wasn't able to get her breastfed son to take a cup until 15 months, so she understood our plight. We chatted about our kids, and she got more background information. We talked about risks. I asked for all of it, what could happen, what the chances are, and what to expect. She was totally honest and I respected her so much more for it. It was a huge relief to hear that since he didn't have heart and lung issues, and was a healthy baby without any upper respiratory symptoms, the chances of anything going wrong were very slim. We talked about what would happen if he had a breathing problem (the most common adverse reaction) and she said sometimes they have to put in a little breathing tube because when babies wake up they tend to freak out and gasp, which can cause them to spasm. Having all this information made me prepared for what could happen, and I knew that no matter what he was in good hands. We couldn't have asked for him to be in a better hospital if something did go wrong.
The clock was ticking slowly and the original nurse came in to let us know that they MRI scan was running late and we wouldn't be going back until 5 or 10 after. I had been avoiding holding Jack, thinking if I did he'd want to eat. But, by 5 after he was getting more worked up and just wanted mom. I snuggled him against my chest and softly whispered his favorite lullaby in his ear. He was trying so hard to go to sleep, but he was so hungry his tummy just wouldn't let him. I kept walking him around, rocking him, singing our song. The last twenty minutes seemed like an eternity. Nurses filled the bed with electronic toys and we desperately tried to keep him happy.
Finally, at 11:25 they came in to let us know that it was our time. The anesthesiologist was a handsome man with dark skin and warm eyes. His accent made me think of the tropics or warmer climates. He shook our hands and said a soft hello to Jackson. He was gentle and kind - not quite old enough to be grandfatherly, but similar in disposition. He agreed that Jackson could be gassed down first, and explained the procedure one more time. He said that they'd walk back, put a small mask on Jackson, and within a minute he would fall asleep. Then they'd get the IV in either his hand or his foot and start the medicine to put him under. The MRI would last anywhere from 30 minutes to an hour, depending on how many pictures they needed. Then they'd bring him back to the room and page us so that we could be there as he was waking up. We were so relieved to know he wouldn't be without us for a moment.
I held my boy that last minute, finished the last line of our lullaby, "When you wake, I'll be there to hold you close like teddy bear" and kissed his head. I told him I loved him and then passed him to Daddy. He was crying, hungry, so tired. I saw his head peeking over John's shoulder as they walked down the hallway. I smiled and waved.
John was back within a minute. Jack had laid down on the table and started crying harder. They put the tiny mask over his face and the doctor said crying is good - they have to breathe when they cry and the more they breathe the faster the medicine works. He fell asleep quickly - within thirty seconds - and the anesthesiologist asked if John wanted to give him a little kiss before he left the room. He did, and joined me back in the curtained area where we sat for a second, trying to just figure out what to do next.
Once we took a moment to breathe, we walked out toward the waiting area. It was down the hallway by the ortho clinic and down a hallway. It was quiet and lonely. One TV was on in the corner, just a bit too loud. It was empty. We sat for a minute, then decided that time would pass more slowly if we were sitting and decided to go downstairs to get lunch. Since he was taken back so late, it was already 11:30, and we knew we'd be hungry by the time we got out of there.
After we ate, we went upstairs to the gift shop. They had beanie babies, and Jack had been playing with the puppy the nurse in radiology gave him last week. We saw a larger puppy, smooshy soft and light blue, and had to get it for him. We sat nearby for another ten minutes or so, then grew impatient and walked down the hallway. We thought about sitting in the radiology waiting room that was almost adjacent to where Jack was, but instead stood in the hallway. It had been 70 minutes since he went back - surely they'd be done soon.
We looked up and the nurse spotted us - almost looking as if she was doing something wrong. She had Jack cradled in her arms, still sleeping from the anesthesia. He was in a diaper, wrapped in a scratchy white blanket, with a monitor hanging from his foot. She said that during the MRI they saw something in his belly and wanted to do a quick x-ray. She said it looked like a black mass and they wanted to know if he may have swallowed something. She added that they did end up having to stick him twice, but other than that he did great, and of course, didn't feel a thing. Jack was stretched out across her chest, his eyes fluttering, and he softly said a word I didn't understand.
We went to the same room we were in for his skull x-rays last week. He was still out from the anesthesia, but started grumping in his sleep. He was opening his eyes and arching his back, clearly unhappy about being naked and on the hard table. We braced him and they snapped two pictures. I held him in my arms for the first time in that room, and he didn't know who I was. He was completely out of it, pushing against my chest with his arms and kicking away with his knees. I passed him to John, who was able to get him calmed down.
When we got back to the APC they said I could go ahead and try to feed him. He didn't quite latch on, and didn't have a strong suction at all. He was still so sleepy and wasn't opening his eyes. He tried to nurse for about ten minutes, and eventually got stronger and more consistent. He drifted back to sleep and I passed him back to John about fifteen minutes later. The nurse came back with the discharge papers and said we could go as soon as we knew if he kept the breastmilk down, then she'd take out his IV in his foot. She said that the ordering doctor would have to let us know what they found in his belly, and John pressed - if it was something urgent, we wanted to know now before we went to pick up the girls and drove all the way home. They called the nurse practitioner down who did his physical earlier and she stopped by the room to let us know she'd go look at the x-rays right that second.
We sat, anxious, wondering what this black mass was in his belly. We worried and I kept reminding John that there was no sense in speculating until they came back in. She returned with a print out and handed it to me asking if I knew what it was. It looked like a doll earring - not sharp, but two balls on either end. It was a long, thin piece of metal right there in his intestines. She laughed and said he'd pass it in a day or two. We were relieved once again.
She left, and we sat in silence again with our sleeping boy. We watched his heart rate on the monitors and he would react when we talked to him. I finally got the idea of saying his sisters' names - knowing how much he loves them and lights up when they come into the room. I whispered, "Jackson - do you want to go home and see Jae Jae?" and he immediately started moving. It was unreal. He started opening his eyes and said "Jae Jae." I started saying each of his sisters' names, and he'd repeat them. I told him we got him a new doggie and he said "goggy" and "woo woo." He sat up, held his head up high, and looked like he'd just had the best sleep of his life. He held his new puppy, squealing "goggy" and "woo woo" and shaking it around. He was 100% back to his old self, smiling at the nurses and talking to us.
His nurse came back in to talk to him and said she could take out his IV now. I asked if I could nurse him while she did it, thinking it might hurt him. He didn't even flinch. He wasn't very hungry after getting IV fluids, but he was nursing as usual and his suction was strong again. We walked through the halls of the hospital thanking God for our amazing boy and the capable hands he was in, filled with calm and optimism for the things to come.
Here are our photos
Wednesday, June 13, 2007
Nightfall
We spent the day at a parish festival from where I grew up, with lots of family around. We put everything out of our minds for a glorious morning. Being surrounded by family, we felt a comfort where words were not necessary - they were understood, unspoken.
The kids sat on the curb being showered with candy from smiling children. The Midas Touch seemed present in every game they played, bringing home the biggest stuffed prizes and a bag filled with treats. Their eyes sparkled with joy every time a ping pong ball landed in a cup or a mechanical pig crossed a finish line as they squealed with delight. The prizes, often small trinkets, were like treasures overflowing within their small hands. The end of the morning they were sticky from sweets and flushed from the heat of the midday sun, and collapsed in the cool air of the car.
We crossed errands off on our list - got haircuts that we knew we'd neglect once the snowball of medical visits and brace adjustments began. We ran by the camera shop for a special lens I've been wanting for months, and went to a store to get Jackson some comfortable shorts to wear with his brace. We busied our minds with things that needed to be done in an effort to not remember what was to come. We went out for dinner and laughed and played the games that are typically disregarded inside a children's menu. We completed our last task of the evening, and started back on the way home.
As we entered the highway, darkness began to fall. The car grew silent as five very tired children drowsily watched a movie and drifted to sleep. We were left alone with our thoughts. The quiet was peppered with an occasional question. "What should he wear tomorrow?" "Do you know what the girls are wearing?" "Should we stop for gas tonight?" Sadness crept in. Fear was in the air. I wondered how on Earth I could keep him from nursing without making him feel that I was denying him the one basic need he has in this world. I wondered how the moments would pass tomorrow, who would meet him first, how he would react to them. Awful thoughts entered my mind, thinking that if something happened this was our last evening together this way - our family - before things were...different. I wondered if the girls would ever forgive me if something happened to their precious boy, our precious boy. This was somehow my fault - I had to call the doctor, I had to press for them to see him the next day at the clinic. Why couldn't I have just left it alone? Why didn't I just let him be? Why am I doing this to our family? Why is God doing this to us? To him.
By the time we reached the house, most of the car was asleep. It was completely dark except for one bright star in the sky. (Though I'm sure it's a planet, because it doesn't twinkle - and someone recently told me that planets don't twinkle.) The crickets were chirping and the night was still. The children were already in their homes for the night, and ours were ready for the trip upstairs. I came inside, ready to pack a bag for the day and arrange things for the morning, and am compelled to check one last time for any calls or emails. I found comfort in the words of friends and family, and see that we are not alone in the quiet of this night - no matter how lonely we may feel. Our friends are near, our family is nearer, and God's hands are going to carry us all through.
By the time you read this post, we'll likely be on our way to the hospital or there already. We'll be wrapped up in the time and commotion of getting there and settling in. But, the silence will come again like it always does, and it will bring with it those irrational fears and terrible thoughts. And, we will pray - harder than we've ever prayed in our life. And God will hold our boy when we cannot any longer.
The kids sat on the curb being showered with candy from smiling children. The Midas Touch seemed present in every game they played, bringing home the biggest stuffed prizes and a bag filled with treats. Their eyes sparkled with joy every time a ping pong ball landed in a cup or a mechanical pig crossed a finish line as they squealed with delight. The prizes, often small trinkets, were like treasures overflowing within their small hands. The end of the morning they were sticky from sweets and flushed from the heat of the midday sun, and collapsed in the cool air of the car.
We crossed errands off on our list - got haircuts that we knew we'd neglect once the snowball of medical visits and brace adjustments began. We ran by the camera shop for a special lens I've been wanting for months, and went to a store to get Jackson some comfortable shorts to wear with his brace. We busied our minds with things that needed to be done in an effort to not remember what was to come. We went out for dinner and laughed and played the games that are typically disregarded inside a children's menu. We completed our last task of the evening, and started back on the way home.
As we entered the highway, darkness began to fall. The car grew silent as five very tired children drowsily watched a movie and drifted to sleep. We were left alone with our thoughts. The quiet was peppered with an occasional question. "What should he wear tomorrow?" "Do you know what the girls are wearing?" "Should we stop for gas tonight?" Sadness crept in. Fear was in the air. I wondered how on Earth I could keep him from nursing without making him feel that I was denying him the one basic need he has in this world. I wondered how the moments would pass tomorrow, who would meet him first, how he would react to them. Awful thoughts entered my mind, thinking that if something happened this was our last evening together this way - our family - before things were...different. I wondered if the girls would ever forgive me if something happened to their precious boy, our precious boy. This was somehow my fault - I had to call the doctor, I had to press for them to see him the next day at the clinic. Why couldn't I have just left it alone? Why didn't I just let him be? Why am I doing this to our family? Why is God doing this to us? To him.
By the time we reached the house, most of the car was asleep. It was completely dark except for one bright star in the sky. (Though I'm sure it's a planet, because it doesn't twinkle - and someone recently told me that planets don't twinkle.) The crickets were chirping and the night was still. The children were already in their homes for the night, and ours were ready for the trip upstairs. I came inside, ready to pack a bag for the day and arrange things for the morning, and am compelled to check one last time for any calls or emails. I found comfort in the words of friends and family, and see that we are not alone in the quiet of this night - no matter how lonely we may feel. Our friends are near, our family is nearer, and God's hands are going to carry us all through.
By the time you read this post, we'll likely be on our way to the hospital or there already. We'll be wrapped up in the time and commotion of getting there and settling in. But, the silence will come again like it always does, and it will bring with it those irrational fears and terrible thoughts. And, we will pray - harder than we've ever prayed in our life. And God will hold our boy when we cannot any longer.
Tuesday, June 12, 2007
The fight begins
Today began the fight for Jackson.
First it was ambulatory care at the hospital. They called to confirm
the sedated MRI on Thursday, and to give us the instructions. He
cannot have breastmilk for six hours before, but if he were six months
old he could. It makes no sense to mandate some arbitrary age. I
asked why and she said, "It's been that way for the six years I've
been here. I'm not sure." I said that the studies show 4 hours is
adequate for digestion and she just reiterated that she wasn't sure
why, but that the orders come from anesthesia. So, no breastmilk for
6 hours before, meaning he can't nurse when he wakes up and is going
to be hungry (and cry) from the time he wakes up until his
MRI. He is allowed juice or water three hours before, and we've been
working every day on getting him to take a sippy cup or a bottle, and
he won't. At all.
I asked about the sedation. She said that they will "put him under
and then page us when they're done." I pressed. I wanted to know if
we could be there, how they will do it, etc. She said it's up to the
anesthesiologist, but that they typically either put in the IV and
then put him under or gas him and then put in the IV - but, that
because of his back curve they want to monitor his airway and they may
not want to gas him first in case of an airway problem. I said, "I
don't see how having in an IV is going to impact his airway - if he
goes into respiratory failure, won't they intubate?" She agreed, but
said that it's up to the anesthesiologist and they just like to have
that IV in before when there's an airway issue. (Jack has never had
oxygen, never had a breathing problem.)
I asked about the IV. The practitioner he saw said that the numb the
IV area. I asked, to confirm, and was told that they don't like to do
that and don't like practitioners to say that. She said, "If he has
small veins and we numb, there's a chance that we'll have to do a
second stick." I said, "Well, his veins will be small from dehydration
anyway, since he can't have anything to eat or drink for hours
beforehand, right?" She just agreed. She said they typically put in
the IV in the hand of the foot, depending on where his veins are best.
I can't see any in either place.
She then said that they'll either have us in the room when they gas
him, or they may opt to "have you say your goodbyes and take him back
before they put him under." He cries when the waitress gets too close
at a restaurant, and I'm supposed to hand him over and let them put
him under in another room? With the knowledge that he could go into
respiratory failure? Shall I just sit with my hands folded and wait
patiently, then?
I'm so frustrated and upset. This is NOT what we were told would
happen. This is NOT what we want to happen. Just because he's an
infant THEY get to choose? I know this needs to be the safest thing
for him, but I don't understand why they can't help him to not feel
pain, or at least not as much pain. I can't even nurse him for
comfort, which is documented to relieve pain. I am SICK over this -
positively sick.
I heard, "Come by and drop off your starving baby so that we can take
him in the back and stick him with needles without you here and
without comfort measures - and if something goes wrong, we'll just
page you and let you know after the fact."
We also called Shriner's to see if they'd cover his helmeting and they
said no, but referred us to another organization who may help. But,
in order to help, we have to get a denial from insurance. In order to
get a denial, we have to have him casted, and in order to have him
casted, we have to pay for it up front.
Shriner's did say that they get at least two calls a week for this,
and that it's so frustrating because insurance claims they're
"cosmetic and unnecessary, which, just flat out isn't true!"
First it was ambulatory care at the hospital. They called to confirm
the sedated MRI on Thursday, and to give us the instructions. He
cannot have breastmilk for six hours before, but if he were six months
old he could. It makes no sense to mandate some arbitrary age. I
asked why and she said, "It's been that way for the six years I've
been here. I'm not sure." I said that the studies show 4 hours is
adequate for digestion and she just reiterated that she wasn't sure
why, but that the orders come from anesthesia. So, no breastmilk for
6 hours before, meaning he can't nurse when he wakes up and is going
to be hungry (and cry) from the time he wakes up until his
MRI. He is allowed juice or water three hours before, and we've been
working every day on getting him to take a sippy cup or a bottle, and
he won't. At all.
I asked about the sedation. She said that they will "put him under
and then page us when they're done." I pressed. I wanted to know if
we could be there, how they will do it, etc. She said it's up to the
anesthesiologist, but that they typically either put in the IV and
then put him under or gas him and then put in the IV - but, that
because of his back curve they want to monitor his airway and they may
not want to gas him first in case of an airway problem. I said, "I
don't see how having in an IV is going to impact his airway - if he
goes into respiratory failure, won't they intubate?" She agreed, but
said that it's up to the anesthesiologist and they just like to have
that IV in before when there's an airway issue. (Jack has never had
oxygen, never had a breathing problem.)
I asked about the IV. The practitioner he saw said that the numb the
IV area. I asked, to confirm, and was told that they don't like to do
that and don't like practitioners to say that. She said, "If he has
small veins and we numb, there's a chance that we'll have to do a
second stick." I said, "Well, his veins will be small from dehydration
anyway, since he can't have anything to eat or drink for hours
beforehand, right?" She just agreed. She said they typically put in
the IV in the hand of the foot, depending on where his veins are best.
I can't see any in either place.
She then said that they'll either have us in the room when they gas
him, or they may opt to "have you say your goodbyes and take him back
before they put him under." He cries when the waitress gets too close
at a restaurant, and I'm supposed to hand him over and let them put
him under in another room? With the knowledge that he could go into
respiratory failure? Shall I just sit with my hands folded and wait
patiently, then?
I'm so frustrated and upset. This is NOT what we were told would
happen. This is NOT what we want to happen. Just because he's an
infant THEY get to choose? I know this needs to be the safest thing
for him, but I don't understand why they can't help him to not feel
pain, or at least not as much pain. I can't even nurse him for
comfort, which is documented to relieve pain. I am SICK over this -
positively sick.
I heard, "Come by and drop off your starving baby so that we can take
him in the back and stick him with needles without you here and
without comfort measures - and if something goes wrong, we'll just
page you and let you know after the fact."
We also called Shriner's to see if they'd cover his helmeting and they
said no, but referred us to another organization who may help. But,
in order to help, we have to get a denial from insurance. In order to
get a denial, we have to have him casted, and in order to have him
casted, we have to pay for it up front.
Shriner's did say that they get at least two calls a week for this,
and that it's so frustrating because insurance claims they're
"cosmetic and unnecessary, which, just flat out isn't true!"
Monday, June 11, 2007
If you click the little icon in the bottom left (I think it's a word bubble shape) it will turn off the captions.
Because of the severity of his scoliosis, it causes him to pull to the
left and his head was flattened on that side. The difference in
measurements from the left side to the right side (diagonally from the
front to the back) is 10mm, meaning he has mild to moderate positional
plagiocephaly. It was recommended that he have a helmet to help the
shape, which he will wear 23 hours a day.
We have to return to the lab to have his head cast and his helmet made
some time next week. Today we left the house at 6AM to drive to
Kirkwood, then to the hospital in time for our radiology appointment,
and by 10 AM when his appointment was over, he was done. He fell
asleep before we were out of the parking garage. Since we have to
return this week some time (or next) to get his back brace fitted,
we'll just do the casting of his head then.
The helmet is rigid and will be measured around the fullest part of
his head. Essentially, as his head grows, the space that is now flat
will fill itself in. The chance of him having a total success in
helmeting is slimmer than that of a younger child because his bones
have started to harden, but we should be able to see some results.
He'll need to go to follow-up visits every two weeks for re-shaping
and re-positioning. They said the average length of time for
helmeting is 4 months.
This is also often not covered by insurance, despite the fact that
it's related to his scoliosis, because they don't feel that it
interferes with his functioning. I wish we new a good laywer. :) We
plan to appeal and appeal again, but will essentially have to pay for
it out of pocket and try to get the insurance to reimburse. The NP we
saw today said she's only seen one ever be approved and she thinks it
was an accident, since it was a set of twins and only one twin was
approved. In order to just have him casted is $500 down, so we're
hoping we can get something rolling with insurance because the payment
plan is ridiculous. It makes me so upset for the low income families
- they don't bother to tell you this until the end of the appointment,
and how easy is it for most families to just come up with $1500? It's
ridiculous. They should have some sort of disclosure when you call
for the intial appointment, when they know what insurance you have.
Such an unfair system.
We are increasingly concerned as the days pass, getting closer to the
MRI on Thursday. Jackson will be under general anesthesia for the
procedure and it is not without risk. Please continue to keep him in
your prayers and I will update more after the MRI on Thursday.
Because of the severity of his scoliosis, it causes him to pull to the
left and his head was flattened on that side. The difference in
measurements from the left side to the right side (diagonally from the
front to the back) is 10mm, meaning he has mild to moderate positional
plagiocephaly. It was recommended that he have a helmet to help the
shape, which he will wear 23 hours a day.
We have to return to the lab to have his head cast and his helmet made
some time next week. Today we left the house at 6AM to drive to
Kirkwood, then to the hospital in time for our radiology appointment,
and by 10 AM when his appointment was over, he was done. He fell
asleep before we were out of the parking garage. Since we have to
return this week some time (or next) to get his back brace fitted,
we'll just do the casting of his head then.
The helmet is rigid and will be measured around the fullest part of
his head. Essentially, as his head grows, the space that is now flat
will fill itself in. The chance of him having a total success in
helmeting is slimmer than that of a younger child because his bones
have started to harden, but we should be able to see some results.
He'll need to go to follow-up visits every two weeks for re-shaping
and re-positioning. They said the average length of time for
helmeting is 4 months.
This is also often not covered by insurance, despite the fact that
it's related to his scoliosis, because they don't feel that it
interferes with his functioning. I wish we new a good laywer. :) We
plan to appeal and appeal again, but will essentially have to pay for
it out of pocket and try to get the insurance to reimburse. The NP we
saw today said she's only seen one ever be approved and she thinks it
was an accident, since it was a set of twins and only one twin was
approved. In order to just have him casted is $500 down, so we're
hoping we can get something rolling with insurance because the payment
plan is ridiculous. It makes me so upset for the low income families
- they don't bother to tell you this until the end of the appointment,
and how easy is it for most families to just come up with $1500? It's
ridiculous. They should have some sort of disclosure when you call
for the intial appointment, when they know what insurance you have.
Such an unfair system.
We are increasingly concerned as the days pass, getting closer to the
MRI on Thursday. Jackson will be under general anesthesia for the
procedure and it is not without risk. Please continue to keep him in
your prayers and I will update more after the MRI on Thursday.
Monday, June 04, 2007
Jackson
Over the last few months we've noticed Jack has some distortion on his head. We knew the likelihood of positional plagiocephaly (flat head from sleeping on their backs, usually) and moved him out of his infant carseat in the last month entirely to help him. It's usually not a big deal and corrects itself when the baby becomes more active. However, we noticed Jack had sort of a pulling toward his left side of his neck, had some facial asymmetry, and was crawling funny, so we called the doctor.
We just got back from the doctor. I'm still sort of processing everything.
He definitely has positional plagiocephaly, but the doctor isn't terribly concerned. He held Jack's head in his hands, and had John hold him down low, and looked from up above to see where we stand. Basically, we can opt to treat it with an appointment at the children's hospital (orthotist?) or we can leave it and see what happens. He said it's purely cosmetic and most children outgrow it - the fact that Jack just got out of his seat and is already showing improvement is a good sign that he'll outgrow it and it will improve with age.
We've decided, since it isn't urget, that we'll wait until his 12 month visit and check his progress before we opt for treatment.
However.
However. When he was doing the exam of Jack's head he noticed something on Jack's side. He asked John to remove his shirt and this time asked to hold him so he could feel his torso. He has a large protrusion from his right side. John said he's noticed before, but always thought it was just how Jack was sitting. The doctor said if we leave his shirt off more often (which we, of course, seldom do) we'll notice it more often. After holding him for a bit and evaluating his torso, he said Jack has a very rare torsional deformity and scoliosis.
He said there are two types of scoliosis (the curvature one that they always checked for in grade school) and the torsional - which is a twisting of the spine. He said it's virtually nonexistant in male children. Basically, Jack's spine is twisted, or rotated, several inches. His ribs are that protrusion on his right side and it's somewhat sunken on his left side.
We don't know anything beyond that. He's referred us to a specialist at Children's and we have to call them in the morning. It was a very long appointment. He said between the positional plagiocephaly and the torsional deformity, he's much more concerned with the latter. He said if this is a lifelong problem, we may want to seek out two opinions (at Children's and Cardinal Glennon Children's Hospital).
On one hand, I feel blessed that there was nothing wrong with his head, his brain, neurologically-speaking, I mean.
On the other hand, I'm sad. I feel guilt for not having seen this myself - I'm his mother! The hundreds of times I've nursed him and I didn't see this? The dozens of times I've bathed him, and I didn't see? I can't help but wonder why, and when, and how. This is all totally raw and I'm sure I'll gain some perspective in the morning, so bear with me, but I just...don't understand, can't comprehend.
He moves amazingly well - he has this way that he kicks up one leg to thrust himself forward. Things are clicking now, in hindsight. He is brilliant and beautiful and sweet and my life - and if he has a mobility issue, we'll figure it out. But, I think it's just in our nature to want someone - something - to blame, and in our nature as mothers to blame ourselves.
I'm anxious to get some real answers and real options. I googled and googled and googled on the ride home (thank goodness for John's blackberry) and, apparently, it IS very rare because I can't find a darn thing on it that isn't a medical journal.
So, that's all I know. I'll keep you more updated as we know more. I have NO idea what this means, at all, or what they'll say at Children's, but I thought you'd want to know (and it helps to get it written down).
We just got back from the doctor. I'm still sort of processing everything.
He definitely has positional plagiocephaly, but the doctor isn't terribly concerned. He held Jack's head in his hands, and had John hold him down low, and looked from up above to see where we stand. Basically, we can opt to treat it with an appointment at the children's hospital (orthotist?) or we can leave it and see what happens. He said it's purely cosmetic and most children outgrow it - the fact that Jack just got out of his seat and is already showing improvement is a good sign that he'll outgrow it and it will improve with age.
We've decided, since it isn't urget, that we'll wait until his 12 month visit and check his progress before we opt for treatment.
However.
However. When he was doing the exam of Jack's head he noticed something on Jack's side. He asked John to remove his shirt and this time asked to hold him so he could feel his torso. He has a large protrusion from his right side. John said he's noticed before, but always thought it was just how Jack was sitting. The doctor said if we leave his shirt off more often (which we, of course, seldom do) we'll notice it more often. After holding him for a bit and evaluating his torso, he said Jack has a very rare torsional deformity and scoliosis.
He said there are two types of scoliosis (the curvature one that they always checked for in grade school) and the torsional - which is a twisting of the spine. He said it's virtually nonexistant in male children. Basically, Jack's spine is twisted, or rotated, several inches. His ribs are that protrusion on his right side and it's somewhat sunken on his left side.
We don't know anything beyond that. He's referred us to a specialist at Children's and we have to call them in the morning. It was a very long appointment. He said between the positional plagiocephaly and the torsional deformity, he's much more concerned with the latter. He said if this is a lifelong problem, we may want to seek out two opinions (at Children's and Cardinal Glennon Children's Hospital).
On one hand, I feel blessed that there was nothing wrong with his head, his brain, neurologically-speaking, I mean.
On the other hand, I'm sad. I feel guilt for not having seen this myself - I'm his mother! The hundreds of times I've nursed him and I didn't see this? The dozens of times I've bathed him, and I didn't see? I can't help but wonder why, and when, and how. This is all totally raw and I'm sure I'll gain some perspective in the morning, so bear with me, but I just...don't understand, can't comprehend.
He moves amazingly well - he has this way that he kicks up one leg to thrust himself forward. Things are clicking now, in hindsight. He is brilliant and beautiful and sweet and my life - and if he has a mobility issue, we'll figure it out. But, I think it's just in our nature to want someone - something - to blame, and in our nature as mothers to blame ourselves.
I'm anxious to get some real answers and real options. I googled and googled and googled on the ride home (thank goodness for John's blackberry) and, apparently, it IS very rare because I can't find a darn thing on it that isn't a medical journal.
So, that's all I know. I'll keep you more updated as we know more. I have NO idea what this means, at all, or what they'll say at Children's, but I thought you'd want to know (and it helps to get it written down).
Success and Sadness
My little sister is an actress and recently filmed this PSA on drowning. I'm conflicted by both my pride in her success and her amazing performance, and the tremendous sadness in the fact that this service announcement needed to be filmed in the first place.
Be forewarned, this is a real 911 call and very sensitive material.
Be forewarned, this is a real 911 call and very sensitive material.
Wednesday, May 30, 2007
Saturday, May 26, 2007
I'm goin' back to Cali...
No, not permanently - but Daddy passed the California bar!!! With a staggering 33% success rate, we are SO proud that John was in the elite few who passed the most grueling bar exam in the country. We knew he could do it. :)
So, we'll probably be going back to California for a swearing in ceremony this summer sometime (if our house would ever sell!)
In celebration we took John out to breakfast this morning and had some time outside while we waited for our table. We also had a chance to re-connect (albeit brief) with our family this afternoon. Despite Piper's best efforts at running away and Jackson's attempt at winning Grumpiest Baby in The World, we had a ncie few hours with some of our favorite people. :)
So, we'll probably be going back to California for a swearing in ceremony this summer sometime (if our house would ever sell!)
In celebration we took John out to breakfast this morning and had some time outside while we waited for our table. We also had a chance to re-connect (albeit brief) with our family this afternoon. Despite Piper's best efforts at running away and Jackson's attempt at winning Grumpiest Baby in The World, we had a ncie few hours with some of our favorite people. :)
Tuesday, May 22, 2007
Friday, May 04, 2007
Happy birthday, big sister
Piper is three :)
The house is in chaos, but I thought I'd stop for a minute and post some new pictures of the kids. I finally unpacked the camera cord ;)
Whoah hotshot!
Thursday, April 19, 2007
Welcome, foolish mortals...
A tour of the new house is up on my flickr account. You can view it in slideshow mode by clicking that option in the upper right hand corner. However, while that's awfully handy, it won't allow you to see the captions that describe what you're looking at.
So, if you want to know what each room is, you'll have to view them one at a time and read what's beneath the photo. When you see the large picture off to the left, there will be a small "thumbnail" of the next picture on the right. Click on that to see it larger. It will change as you go, letting you get a preview of what is next. There is no "next" or "more" that works to just flip to the next large picture. Sorry - kind of a pain.
You may also need to cut and paste the URL into your browser. For some reason Blogger doesn't make links clickable.
Okay, without further ado:
http://www.flickr.com/gp/25593327@N00/650823
So, if you want to know what each room is, you'll have to view them one at a time and read what's beneath the photo. When you see the large picture off to the left, there will be a small "thumbnail" of the next picture on the right. Click on that to see it larger. It will change as you go, letting you get a preview of what is next. There is no "next" or "more" that works to just flip to the next large picture. Sorry - kind of a pain.
You may also need to cut and paste the URL into your browser. For some reason Blogger doesn't make links clickable.
Okay, without further ado:
http://www.flickr.com/gp/25593327@N00/650823
Wednesday, April 18, 2007
Stand in the place where you live...
We're on the tail end of one of the most stressful months of our life. Right now it feels like everything is up and down, the relocation company who is handling our closing has rescheduled four times, and the finance company is throwing side projects at us every day (as if we have nothing better to do).
The kids are going completely insane with almost all the toys packed, and we haven't had a seriously healthy meal in days. All the take out and drive through have taken their toll on our physical and mental well-being, no doubt.
I keep having to remind myself that it is worth it - it is worth it - IS IT worth it??
It is. I know it is, and very shortly all of this will be a distant memory. But today, this week, it's rough. We're just ready to be done, settled, home. The images of our children running laps in the glorious new backyard carry us through, the memories of my own childhood spent running around the backyard at dusk with the clang of washers hitting a pipe (or the fence, depending on who was playing!), catching lightning bugs are forever embedded in my mind, in my soul. I mourn for the years that our children have been deprived of that, and await, anxiously, the moment our lives transition into that place - the lifestyles of our parents, our grandparents, hidden away from the evils of society and tucked neatly in a backyard lawn.
Thursday, April 05, 2007
Bunny Boy
As we prepare for the move, we find ourselves struggling to get through the day. The combination of 90% of the house in boxes and the excitement and anticipation of a new home are enough to send the whole crew into chaos. With so little to do, and yet, so much to do, we are constantly trying to find humor and joy in life. We have three weeks left in this home. And, though it is just a house built of sticks that we've never particularly been fond of in the structural sense, it is our home, our first house, and it is the place where we brought home our baby boy. This will be his first, and our third Easter, and it will be celebrated in this house amongst the boxes and bags. And, I'm sure, in the coming years we'll remember this house fondly, not for the exterior shell that was a house, but for the memories and soul that were our home.
Tuesday, March 27, 2007
A new house for our growing tribe
I didn't want to say anything until we knew for sure - because we've gotten our hopes up in the past and had them fall through - but this is it, we signed the contract and are just awaiting final approval for all the paperwork. We close April 26th! :)
The house is on a cul de sac, has a 3 car garage, and a finished basement. The front porch has room for a swing.
Inside on the main floor is laminate flooring in the living and dining room. There is a brick, woodburning fireplace in the living room.
The dining room is HUGE and has grapevine wallpaper along the chair rail and has columns that separate it from the living room.
The kitchen has the new composite "ceramic" flooring that doesn't crack on impact, double ovens with a flat cooktop, double porcelain sink, an island, and a small "bar" countertop area that connects to the dining room.
The walls are all painted with lots of color - some turquoise, lime, yellow, red. It's nice.
The backyard is beautiful, with lush green grass and a wood (Rainbow brand, maybe?) play structure on mulch. It's huge! The fence is privacy height (8'?) and made of cedar. It has a brick patio with a pergola overhead for some shade, and two beautiful flowering trees that are still small, but established.
There's a three car garage with built-in cabinets. The basement is finished with a family room and a full suite - bedroom and full bath on the lower level.
Upstairs there is brand new frise carpeting throughout. There's a master suite with whirlpool tub and an enormous (bedroom sized) walk-in closet. There are two small bedrooms near us, and 2nd floor laundry (YAY!). Down the hall from us is this ENORMOUS suite for the older two girls. It has dual closets and a finished area that's sort of a reading nook or small "living room" that's built in. Turns out that was attic space above the garage and it was finished (presumably when they first built the home).
It's a bit older than we originally wanted, going on 11 years, but they are paying for a warranty for us and it has a new hot water heater. The furnace and A/C are covered by the warranty, if they should go out.
I think that's it! :)
We're so excited and can't wait for you to see it!!!
Sunday, March 18, 2007
My little hooligan
Happy St. Patrick's Day!!!
My crazy boy is all over the place - across the living room and going down the hall in a minute, flat! He's so much fun, and such a handful. He's got an inquisitive spirit and would rather be pushing the vacuum down the hall than playing with his toys. He loves to be in the middle of things and is already pulling up on the cubes and the djembe drums in our living room. It's amazing how quickly life changes.
My crazy boy is all over the place - across the living room and going down the hall in a minute, flat! He's so much fun, and such a handful. He's got an inquisitive spirit and would rather be pushing the vacuum down the hall than playing with his toys. He loves to be in the middle of things and is already pulling up on the cubes and the djembe drums in our living room. It's amazing how quickly life changes.
Monday, March 12, 2007
Evening Son
With the blessing of an extra hour of sun in the evenings, we managed to find time to play outside tonight. Despite three rather large mosquitos, we had a nice evening and managed to capture some nice shots of the kids.
Friday, March 09, 2007
And He'll Have Fun, Fun, Fun...
Back from California. Jackson had his first trip on an airplane and did wonderfully! He slept most of the way there and only seemed to be uncomfortable during the landing when we got home. His stroller ended up being too big, so we had to buy another one out there at Target. He did great in the hotel, sleeping in the Travel Lite crib and was a stellar baby the entire time. If only his sisters were so well-behaved.
Mom - I'm ready for take-off
Kisses from Daddy in the Princess Fantasy Faire
Smoochy boy
Sea World Day :)
SO warm and flushed! (We lost the jacket right after this)
Developmentally, this week has been a huge leap for Jack - he cut through his last two of eight teeth (four on top, four on bottom now!) and figured out how to kick one leg underneath himself to flip up to sitting. Yesterday, he was sitting on the couch by me and pulled himself up to standing, and today he learned to crawl in rhythm and can get around SO fast! He's off the rug in seconds now. He's also started the diaper change fight - but he doesn't wiggle when sissy changes him, she's happy to report. He's really getting interested in toys and will hug and hold onto his little Anne Geddes bear from the boutique in Downtown Disney(land). If you put it out of his reach, he'll crawl over to the baby right away.
Mom - I'm ready for take-off
Kisses from Daddy in the Princess Fantasy Faire
Smoochy boy
Sea World Day :)
SO warm and flushed! (We lost the jacket right after this)
Developmentally, this week has been a huge leap for Jack - he cut through his last two of eight teeth (four on top, four on bottom now!) and figured out how to kick one leg underneath himself to flip up to sitting. Yesterday, he was sitting on the couch by me and pulled himself up to standing, and today he learned to crawl in rhythm and can get around SO fast! He's off the rug in seconds now. He's also started the diaper change fight - but he doesn't wiggle when sissy changes him, she's happy to report. He's really getting interested in toys and will hug and hold onto his little Anne Geddes bear from the boutique in Downtown Disney(land). If you put it out of his reach, he'll crawl over to the baby right away.
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