I am positively FED UP with this woman in Orthotics & Prosthetics.
First, we find out that he needs a helmet and they spring on us AT the appointment that we need to pay $1500 out of pocket just to get him casted for the helmet. (Like they can't MENTION that when you schedule your appointment???? Days, if not WEEKS, ahead of time?) They KNOW that. Why not just say "Can I get your insurance? Oh, by the way, your carrier typically doesn't cover this, so you may want to be prepared to pay for it yourself."
So, we get there, are not in a position to pay that right that moment, so we have to leave and come back another day. He had been casted for his back brace a week before that and they said it would be 7-10 days, so we thought three more days, tops. Another week beyond that goes by, with us calling her to check and see if it was in (time is precious when a spine is pressing on your baby's heart and he has progressive scoliosis).
John pressed - caling her and explaining that we needed to get this done ASAP saying that they told us 7-10 days and it was now 15, then called our doctor's office. They said the plastic surgery department needed to call and really put the pressure on them to get him in. The O&P lady actually said to John, "Well you should have come over to do it THAT day - we had openings that day." Oh - did you also have $1500 you could give us THAT DAY?!!!?!? Because we had NO WARNING that we'd need $500 down at least - could YOU write a check for $500 with a moment's notice? We didn't even have a checkbook WITH us.
Miraculously, his brace was ready midday. But, of course, they couldn't get him IN that day - and then we had to begin the literally three hour process of getting TO the hospital's lab (by the time we arrange for the kids to go somewhere and drive over there).
So, we finally get in 15 days after he's been casted for his back brace and they do his helmet casting. Again, we're told 7-10 days. Today is day 10 and she calls this morning to say that it's in. BUT - she wants to schedule it for Monday afternoon - well, we have another appointment Monday afternoon. Okay, how about Tuesday afternoon? NO, we see the surgeon on Tuesday. Fine - well, Wednesday is a holiday so I guess the earliest we could get you in is Thursday.
Thursday is almost a month since we were told to get him casted - she said, "Oh - you mean since it was PRESCRIBED?" Whatever! YES.
She proceeds to tell me how the whole day is booked up because they do fittings and adjustments on other patients AND the plastic surgery department sends over walk-ins for castings - because Fridays are supposedly the only day they see patients (Funny - we weren't there on a Friday!).
I explained that his head is going to stop being nearly as flexible as time goes by and we've already lost an entire MONTH in this process. She puts me on hold and says they can squeeze me in at 10:30 on monday, but that they have another helmet fitting and it will be tight - so, great - we'll be lucky if we can RUSH out the door and get to the next appointment!
So, now I'm in tears from having to deal with this woman. Emotions are running high as it is - everything feels like we're running out of time as his skull hardens and his spine gets worse and NOTHING can impress upon this woman how urgent it is when it's YOUR BABY!
*~*~*~*~*~*~*~*~*~*~* UPDATE*~*~*~*~*~*~*~*~*~*~*~*~*~*
I called the hospital to file a complaint. They paged the head of hospital relations, and, lucky for me, he was a gentle older man who was very understanding and compassionate. He's going to make the call today to get them informing parents when they call for the appointment for helmeting with plastic surgery that they'll be responsible for such a large sum up front. It doesn't change my experience, but if it helps the hundreds, if not thousands, of parents behind us then our frustration hasn't been in vain.
He also took note of this woman in Orthotics and we talked about how she should be in another field. They are providing a service here, and failing to meet our needs, so we will no longer be customers of this lab. From now on, we'll do all of his orthotics through Shriner's. I explained that while Jack's issues are lifelong, they're not nearly as devastating as, perhaps, the loss of your child's limb or the other issues children come in for. I pointed out that when a parent comes into the hospital for their child, they are in as much pain as that child - and this is as difficult for them, if not moreso. Someone who cannot comprehend that and cannot be compassionate about the urgency or concern a parent has, should not be in that profession dealing with the parents on a daily basis. He agreed wholeheartedly and said they not only treat children, but parents, grandparents, and even aunts and uncles there - when parents have to return to work or whatever their situation is.
So, I hope that my constructive criticism of our encounters at least helps someone else coming down this path in the future.
Friday, June 29, 2007
Monday, June 25, 2007
Relay for Life
This past weekend we attended our family's 11th annual Relay for Life to benefit the American Cancer Society. This year's theme was "Superheroes" (hence the Superman shirts on the kids). We walk in memory of my grandpa, who lost his battle with prostate cancer just before our first daughter was born. The girls never had the chance to meet him, but we honor his memory every year and it gives us a chance to talk about what a great man he was. The girls feel like they know him now, and talk about how one day they'll meet him in Heaven.
The girls spent the evening hawking bracelets for Vicki, and by the end of the night our team efforts were rewarded with a Bronze award for having reached the $1500 mark!
The girls spent the evening hawking bracelets for Vicki, and by the end of the night our team efforts were rewarded with a Bronze award for having reached the $1500 mark!
Thursday, June 21, 2007
Wednesday, June 20, 2007
Traumatized in Plaster
Today the back brace finally arrived, and we headed to the Orthotics & Prosthetics lab for his fitting and head casting.
It was - in short - a nightmare.
The office was in a random medical building set far away from Children's. We had to park in a garage, cross a sky walk, and wind through corridor after corridor. They were down two sets of elevators and in a small doorway. The sound of a mad scientist's laboratory filled the room - grinding and sawing, and the smell of hot plastic filled the air.
The exam room was splattered with plaster drips and the two small chairs had stains from years of use. We waited for just a moment before the Orthotist came in and set down his brace on the table.
The brace fit nicely, but was too long. He tried it on Jack, lying down, and marked against his hips where it needed to be shortened. He wasn't thrilled and struggled to move at first, but once they made the necessary adjustments he did much better. He can sit in it in the carseat (although he gets very hot) and is currently crawling around on the floor in it. (Many thanks to our sweet friend Heather who sent his Zutano outfit seen in these pictures. It's nice to have something so soft and comfortable under his brace.)
Then, they began the casting. They set him in a Bumbo (remember his aqua seat that helped him sit up when he was just 4 months old? They had one in the lab, too.) They draped him with a big, white cloth. Then they covered his entire face with a ski mask of sorts, made of a thin, breathable fabric. He screamed the second it went on - the eye holes were asymmetrical and it covered his nose and mouth. He panicked and thrashed the entire fifteen minutes, which dragged on for an eternity. They covered his entire head with a section of wet plaster, then wrapped the rest of it all the way around with plaster gauze. After letting it set for a minute, they cut it off with a large utility knife against a rubber hose sandwiched between his head and the gauze. He screamed so hard he wasn't breathing at times, and would gag and choke. We were sure he was going to vomit. I reached my hand under the drape and rubbed his leg. Two grown men could hardly hold him still enough to cast his head. He screamed, and screamed, and screamed. It was heartbreaking, to say the least. Nothing in his life has upset him so much until this moment, and we felt awful. If we had known, I think we would have taken our chances with his head self-correcting and left him alone.
He laid against my chest for a minute, then had to get dressed and back in the brace. He's easier to carry now, upright and sturdy almost. He sits up so much taller in his carseat, too. I'm deluding myself into thinking that this is going to somehow magically cure him - that one day we'll go in for an adjustment and his spine will be a standard curve and he won't need surgery. That his perfect, soft baby skin will stay the way it is and he will never know such profound pain.
It was - in short - a nightmare.
The office was in a random medical building set far away from Children's. We had to park in a garage, cross a sky walk, and wind through corridor after corridor. They were down two sets of elevators and in a small doorway. The sound of a mad scientist's laboratory filled the room - grinding and sawing, and the smell of hot plastic filled the air.
The exam room was splattered with plaster drips and the two small chairs had stains from years of use. We waited for just a moment before the Orthotist came in and set down his brace on the table.
The brace fit nicely, but was too long. He tried it on Jack, lying down, and marked against his hips where it needed to be shortened. He wasn't thrilled and struggled to move at first, but once they made the necessary adjustments he did much better. He can sit in it in the carseat (although he gets very hot) and is currently crawling around on the floor in it. (Many thanks to our sweet friend Heather who sent his Zutano outfit seen in these pictures. It's nice to have something so soft and comfortable under his brace.)
Then, they began the casting. They set him in a Bumbo (remember his aqua seat that helped him sit up when he was just 4 months old? They had one in the lab, too.) They draped him with a big, white cloth. Then they covered his entire face with a ski mask of sorts, made of a thin, breathable fabric. He screamed the second it went on - the eye holes were asymmetrical and it covered his nose and mouth. He panicked and thrashed the entire fifteen minutes, which dragged on for an eternity. They covered his entire head with a section of wet plaster, then wrapped the rest of it all the way around with plaster gauze. After letting it set for a minute, they cut it off with a large utility knife against a rubber hose sandwiched between his head and the gauze. He screamed so hard he wasn't breathing at times, and would gag and choke. We were sure he was going to vomit. I reached my hand under the drape and rubbed his leg. Two grown men could hardly hold him still enough to cast his head. He screamed, and screamed, and screamed. It was heartbreaking, to say the least. Nothing in his life has upset him so much until this moment, and we felt awful. If we had known, I think we would have taken our chances with his head self-correcting and left him alone.
He laid against my chest for a minute, then had to get dressed and back in the brace. He's easier to carry now, upright and sturdy almost. He sits up so much taller in his carseat, too. I'm deluding myself into thinking that this is going to somehow magically cure him - that one day we'll go in for an adjustment and his spine will be a standard curve and he won't need surgery. That his perfect, soft baby skin will stay the way it is and he will never know such profound pain.
Monday, June 18, 2007
Action Jackson
Here's the boy wonder on the go. (And a side of sillies)
You can really see his ribs/spinal deformity on the right side here as he crawls.
You can really see his ribs/spinal deformity on the right side here as he crawls.
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.
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