There are so many ways that Lars now reminds me of Lars in his first ten weeks. I can often get him to settle if I throw all my energy into it & provide constant significant gross motor, vestibular input, singing, games, funny sounds...and it happens to be a combination that works. Then maybe after a half hour of that he'll calm down & have a few good minutes. Then something happens and he arches his back, screams, cries, turns red in the face, stiffens his limbs.
But in his first ten weeks Lars weighed 7 & 8 pounds, and was significantly shorter than he is now. There aren't too many giants like me around who can provide the input that will settle him. And ho ho ho- this giant gets tired & has a significant amount of work she needs to do at home to prepare for teaching two courses, one new to me.
Other times Lars is inconsolable, like he was his first hour of life, and there's nothing that will help. We have prescriptions for morphine & valium--with them we just might get a little bit of calm time so he can actually eat.
It's interesting to me that there have been only three significant times without seizure activity in his life: his first ten weeks, a six week period when he was 4-5 months old, and the six weeks since this past Dec. 20th, when he's been feeling terrible. Occasionally he would go a few days without having a seizure, and I had noticed several times that he seemed to have a high level of irritability after a couple days without a seizure.
What does all this mean?
Where to go from here?
It's my habit to imagine worst-case scenarios, and to figure out how I would deal with them; then what actually happens is usually not quite that bad. However, imagining Lars feeling this bad on a daily basis for the indefinite future is something I haven't been able to wrap my mind around yet. Coping with his loss of vision, intellect, verbal communication, motor abilities was nothing compared with coping with my baby in severe, ongoing pain. This is heartbreak.
With no clear path laid out before us, we're searching for the footprints of those who have gone before us. Are there parents, neurologists, anyone who can describe a similar situation, and what the trajectory looked like?
Is this something--as one of the early GI docs said--that "just happens to neuro kids sometimes"? And if so, for how long?
I haven't been feeling well today. Last night I got a vertigo migraine, and today I've been hungover from that, achy, disheartened, and so exhausted I struggle to keep my eyes open. My system is insisting that I curl up in a silent dark place and rest. For about a month.
Numerous wonderful things that have also happened the past few days. I got to go see Cornell West and Sweet Honey in the Rock at Berklee--and thanks to Karen W & CBT, tix were free, to boot. Both Sweet Honey & Cornell West were breathtakingly moving, deepening, and sublime. Definitely cracked me open.
Grandma continues to be a life-saver, taking turns caring for Lars, Joa, and Abbykyns; going shopping; doing dishes & laundry; cooking food...and tonight she has Larsy overnight in her bed because Andey's working & I'm teaching tomorrow. Let's hope he does well. Grandma needs to leave Monday; we'll miss her so much.
Joa got to go rollerblading this afternoon with Grandma, so that was great fun. He's doing well, considering the amount of screaming his little brother is doing, and how that leaves him feeling agitated.
Jean came to help at Mechanic Street yesterday; Michele came today with majorly delicious food, and rocked Larsman for a while. She was able to elicit six calm moments, and one catnap from him. On Friday afternoon Lars & I spent 2 hours in the wonderful warm Fernald pool with seven friends (4 toddlers & 3 moms), and although Lars cried much of the time (which I've never seen him do in the pool before), we traded kids & passed him around & had a generally grand time.
On the way home from the pool we got to visit our sweet Denise, who is recovering from shoulder surgery, and sweet Kali was there, as well.
Lars did have some semblance of his normal routine Thursday. OT with Sue, and there were joyful reunions with Meredith and Alice. He got his new chair & it's fabulous. A single seat with two different bases, one for rolling around out in the world, and one for home that not only rolls but also moves up and down.
Good long phone conversations with Lisa & Carylbeth, sweet emails. Thank you all.
This week we have appointments with CCS, the Complex Care Service, and with epileptology. Now I have an appointment with my pillow.
Saturday, February 03, 2007
Friday, February 02, 2007
very brief update
The magic of being home has worn off. Lars is having quite a few periods of extreme pain, interspersed with a range of uncomfortableness, occasional contentment, and rare-but-still-accessible happiness.
I will write more tonight. Thanks for keeping us in your thoughts.
I will write more tonight. Thanks for keeping us in your thoughts.
Wednesday, January 31, 2007
home, sweet home
We did it. We arrived home around 9:30 or so tonight. Lars was so sweet & so happy to be home--he could hardly contain himself. Grins from ear to ear, head thrown way back & excitement from head to toe. It was a joyful homecoming.
Larsy did great with Grandma & Jean while the moms were at his IEP meeting. When we arrived, he was asleep on Jean's lap. After he woke I sang him a going home song, and after about the fourth time through it looked like a little light bulb lit in his head, and he understood what I meant. He became very animated & excited, and pretty much remained that way through the packing & exiting scene. He was thrilled to have both his hands free, to be out of the room, in the lobby, outside, in his car seat- it was all just perfectly delightful and enthusiasm reigned.
Larsy had many, many cuddles and a much-needed and deeply-appreciated bath, climbed into his jammies, and snuggled off to sleep. Joa was happy to have his baby brother home, and wasted little time falling asleep himself.
Yesterday Joa expressed teary fears that Lars will "just scream all day like before he went to the hospital." Yeah, it's a concern. We are going to help him with ideas of what he can do when this happens, and are looking into a great lead from a friend for an ongoing sibling group at children's. He thought that sounded like "a great idea."
Joa also held some concern about his dear Denise, who had surgery on her shoulder today. He was much relieved to hear when she was home & resting comfortably. He spent a bunch of great time today with cousin Jean & continues to be just tickled that Grandma came all the way out from California to be with him while his brother was in the hospital. I haven't dared to break the news that she'll be leaving Monday.
And then there are the rats.
Joa's great disappearance into cable tv while he visited the hospital has further reinforced our resolve that this will remain a TV-free house. He watched some program on animal planet about rats, and he's now terrified that rats can "blow up your house" and he insists he learned that when you're in the city, you're "never farther than 15 feet from a rat." And he has all sorts of odd information about skulls in a church basement, hanging from a ceiling, and the plague. We haven't been able to sort it out. I'm certain we can live well without it, though.
We were again blessed with dear friends & comfort food: Abigail & Lily brought mac n cheese & their mama's brownies, and wonderful apples for me. Mmmmm. This was their second visit, and Lars screamed through it, as well as the first. Luckily they see him at Perkins when he's not screaming, too. The girls made him a cool tactile picture, and so did Chase. The laptop camera makes everything a mirror image, so reading's hard, but here they are:
I have much to say about today's IEP meeting, but I'm not going to publish it here... One just never knows who is reading what.
Some happy Lars after we told him he got to leave the hospital photos:
It's fantastic to have him home again. Tomorrow he gets to see Alice & Meredith & Sue. He also receives his new wheelchair tomorrow. Big day.
Welcome home, Larsman. Welcome home.
Larsy did great with Grandma & Jean while the moms were at his IEP meeting. When we arrived, he was asleep on Jean's lap. After he woke I sang him a going home song, and after about the fourth time through it looked like a little light bulb lit in his head, and he understood what I meant. He became very animated & excited, and pretty much remained that way through the packing & exiting scene. He was thrilled to have both his hands free, to be out of the room, in the lobby, outside, in his car seat- it was all just perfectly delightful and enthusiasm reigned.
Larsy had many, many cuddles and a much-needed and deeply-appreciated bath, climbed into his jammies, and snuggled off to sleep. Joa was happy to have his baby brother home, and wasted little time falling asleep himself.
Yesterday Joa expressed teary fears that Lars will "just scream all day like before he went to the hospital." Yeah, it's a concern. We are going to help him with ideas of what he can do when this happens, and are looking into a great lead from a friend for an ongoing sibling group at children's. He thought that sounded like "a great idea."
Joa also held some concern about his dear Denise, who had surgery on her shoulder today. He was much relieved to hear when she was home & resting comfortably. He spent a bunch of great time today with cousin Jean & continues to be just tickled that Grandma came all the way out from California to be with him while his brother was in the hospital. I haven't dared to break the news that she'll be leaving Monday.
And then there are the rats.
Joa's great disappearance into cable tv while he visited the hospital has further reinforced our resolve that this will remain a TV-free house. He watched some program on animal planet about rats, and he's now terrified that rats can "blow up your house" and he insists he learned that when you're in the city, you're "never farther than 15 feet from a rat." And he has all sorts of odd information about skulls in a church basement, hanging from a ceiling, and the plague. We haven't been able to sort it out. I'm certain we can live well without it, though.
We were again blessed with dear friends & comfort food: Abigail & Lily brought mac n cheese & their mama's brownies, and wonderful apples for me. Mmmmm. This was their second visit, and Lars screamed through it, as well as the first. Luckily they see him at Perkins when he's not screaming, too. The girls made him a cool tactile picture, and so did Chase. The laptop camera makes everything a mirror image, so reading's hard, but here they are:
I have much to say about today's IEP meeting, but I'm not going to publish it here... One just never knows who is reading what.
Some happy Lars after we told him he got to leave the hospital photos:
It's fantastic to have him home again. Tomorrow he gets to see Alice & Meredith & Sue. He also receives his new wheelchair tomorrow. Big day.
Welcome home, Larsman. Welcome home.
going home early evening
Word has it we're aiming to go home early this evening. Andey's trying to get everything that we need set up.
Andey reports a long, rambling, frustrating conversation this morning with Dr. Uninformative in which he was entirely unable to hear, among other thoughts she clearly articulated, her concerns that Lars basically hasn't been able to move his bowels without a sepository in a couple weeks, and that when he has been able to go, post sepository, he seems not to be clearing his system.
I'm done with Uninformative and Interrupticus; we'll handle the issue with the outpatient GI/CCS team that we now need to build. And next time we come in, Lars' chief attending doctors will be from CCS, the Complex Care Service, not Uninformative and Interrupticus, who are general hospitalists from Harvard Vanguard, assigned to us randomly because Lars' pediatrician happens to be from Southborough Medical and they happen to contract with Harvard Vanguard to provide hospital coverage.
The CCS doctors are specialists in working with kids with complex medical and developmental needs. Hopefully they are doctors who understand deeply that these little people are a system, and that changing any part of the system has implications for every other part, and for the whole. They have promised, among other things, to get us a consistent floor, and room and nurses if they can, for all Lars' hospitalizations so we can build an inpatient team that is informed and consistent.
Perhaps we won't have to explain five times a day, "he's not going to look at the cute toy you brought," and "please tell him you're going to touch him before you do," and "he would like to hear your voice and feel your hands to meet you," and "if you could tape the IV board so he still has use of his fingers, he'll be a much happier kid; he sees with his hands and ears," and "he's non-verbal," and "no, he doesn't point to where the pain is," and "yes, he knows who his mothers are."
I'll head to Longwood Avenue after the IEP & we'll say our good-byes. Even if we end up going back soon-ish, and even though we don't have answers, it'll be good to be home together.
Andey reports a long, rambling, frustrating conversation this morning with Dr. Uninformative in which he was entirely unable to hear, among other thoughts she clearly articulated, her concerns that Lars basically hasn't been able to move his bowels without a sepository in a couple weeks, and that when he has been able to go, post sepository, he seems not to be clearing his system.
I'm done with Uninformative and Interrupticus; we'll handle the issue with the outpatient GI/CCS team that we now need to build. And next time we come in, Lars' chief attending doctors will be from CCS, the Complex Care Service, not Uninformative and Interrupticus, who are general hospitalists from Harvard Vanguard, assigned to us randomly because Lars' pediatrician happens to be from Southborough Medical and they happen to contract with Harvard Vanguard to provide hospital coverage.
The CCS doctors are specialists in working with kids with complex medical and developmental needs. Hopefully they are doctors who understand deeply that these little people are a system, and that changing any part of the system has implications for every other part, and for the whole. They have promised, among other things, to get us a consistent floor, and room and nurses if they can, for all Lars' hospitalizations so we can build an inpatient team that is informed and consistent.
Perhaps we won't have to explain five times a day, "he's not going to look at the cute toy you brought," and "please tell him you're going to touch him before you do," and "he would like to hear your voice and feel your hands to meet you," and "if you could tape the IV board so he still has use of his fingers, he'll be a much happier kid; he sees with his hands and ears," and "he's non-verbal," and "no, he doesn't point to where the pain is," and "yes, he knows who his mothers are."
I'll head to Longwood Avenue after the IEP & we'll say our good-byes. Even if we end up going back soon-ish, and even though we don't have answers, it'll be good to be home together.
home today?
Went to the hospital after class last night & Lars was so pale asleep on Grandma's lap. It had been a rough awakening from anesthesia, and there had been another several hours of intermittent serious pain, like the night before. They said he would fall asleep for a few minutes, clearly exhausted, and then the pain would wake him & he would scream. He did that Monday night, too, the small asleep moments lasting mere seconds. Then he had managed to fall deeply asleep, and was in that state when I came back. Lars still hadn't eaten anything in 24 hours, and threw up the last meal he ate.
Just before we left last night, around 9:00, Lars woke up & was not screaming. In fact, it wasn't long before he felt a little spunky, and was going for the IV line to chew on. (That's the IV line headed to the left from their hands...)
Rats, foiled again.
Andey called home later last night to say that Lars was feeling better, had not been in pain, and had eaten some dinner.
Let's hope Lars not only slept, but stayed ON the bed last night. I keep thinking how glad I am that I lowered the hospital bed all the way down last night.
I rode home in Grandma's rental car, in the back seat with Joa. Big risk for me, given my intense motion sickness. And indeed by the time I arrived home my headache had turned into spinning and I was ready to throw up. I couldn't look at a computer screen to write, and just went directly to bed. I slept like a log.
We have no answers. All the tests are negative. Normal. Having travelled all the way around the board, we're back at "go." Instead of collecting $200, we're just going to go home and figure out what life will be like now. We'll climb on board with the chronic pain magagement team, and Lars will have the best options for pain control available to him.
There's a lot to process and think about. Pain is such a strong and immediate message from our bodies that something is wrong, that something physically needs to change. Giving him medication to turn off that message as a first response seems so tricky. What does it mean to us as parents of Lars who is not able to point to where it hurts, or to say, "No, this pain is different from my usual pain. This is in my ear, or this is in the area of my appendix, or this is my hip."? It will be quite a fine line we learn to stumble upon.
One of my first projects for a free moment is to call Blue Cross to find out if we can get acupuncture covered for Lars. It's time to look down some alternate roads for pain management.
This is one of the finest children's hospitals on the planet. In spite of all my dissing, I do end up having faith that if they can't find out what's going on, probably no one can. I am deeply grateful for all the energy and work they've put into Lars.
I have more to say, but no more time right now. Work at Mercy Centre today, Lars' sure-to-be-contentious IEP meeting in Marlborough at 1:00. Perhaps going to fetch Lars after the meeting. Wouldn't that be something, to be all home together tonight.
Here are some photos from a couple days ago, before this latest pain crisis. Lars was doing some heavy duty listening to a new CD of Native American flute music. He fell in love with the Native American flute when Kathleen played it for him a few months ago, so she brought him this CD last week. Intensely beautiful music.
Just before we left last night, around 9:00, Lars woke up & was not screaming. In fact, it wasn't long before he felt a little spunky, and was going for the IV line to chew on. (That's the IV line headed to the left from their hands...)
Rats, foiled again. Andey called home later last night to say that Lars was feeling better, had not been in pain, and had eaten some dinner.
Let's hope Lars not only slept, but stayed ON the bed last night. I keep thinking how glad I am that I lowered the hospital bed all the way down last night.
I rode home in Grandma's rental car, in the back seat with Joa. Big risk for me, given my intense motion sickness. And indeed by the time I arrived home my headache had turned into spinning and I was ready to throw up. I couldn't look at a computer screen to write, and just went directly to bed. I slept like a log.
We have no answers. All the tests are negative. Normal. Having travelled all the way around the board, we're back at "go." Instead of collecting $200, we're just going to go home and figure out what life will be like now. We'll climb on board with the chronic pain magagement team, and Lars will have the best options for pain control available to him.
There's a lot to process and think about. Pain is such a strong and immediate message from our bodies that something is wrong, that something physically needs to change. Giving him medication to turn off that message as a first response seems so tricky. What does it mean to us as parents of Lars who is not able to point to where it hurts, or to say, "No, this pain is different from my usual pain. This is in my ear, or this is in the area of my appendix, or this is my hip."? It will be quite a fine line we learn to stumble upon.
One of my first projects for a free moment is to call Blue Cross to find out if we can get acupuncture covered for Lars. It's time to look down some alternate roads for pain management.
This is one of the finest children's hospitals on the planet. In spite of all my dissing, I do end up having faith that if they can't find out what's going on, probably no one can. I am deeply grateful for all the energy and work they've put into Lars.
I have more to say, but no more time right now. Work at Mercy Centre today, Lars' sure-to-be-contentious IEP meeting in Marlborough at 1:00. Perhaps going to fetch Lars after the meeting. Wouldn't that be something, to be all home together tonight.
Here are some photos from a couple days ago, before this latest pain crisis. Lars was doing some heavy duty listening to a new CD of Native American flute music. He fell in love with the Native American flute when Kathleen played it for him a few months ago, so she brought him this CD last week. Intensely beautiful music.
it's not us, but if you want a giggle, check out Hahaha (just click this title)
Thanks to Kathleen for the link. I sure needed the laugh.
And speaking of thanks to Kathleen and what I needed, I arrived @ Lesley yesterday at 4:01 to teach my 4:00 class (kept stalling at the hospital because I really wanted to see Lars post-anesthesia before I left, but wasn't able to) and what do I find perched on the table waiting for me but the first actual real Danish pastry I've laid eyes on since we were in Denmark. Not only is it amazingly fabulously wonderfully delicious, and from an actual Danish bakery in the area, but it's also my very very very very favorite kind of actual real Danish pastry (which has basically nothing in common with what is market here as Danish pastry) in the whole world.
There are only a few food things that bring me elephantine euphoria. That is one.
And, having gracously shared with Andey, Joa, Grandma, and Lars' night nurse, there is still half left. Mmmmmmmmmmmm.
And speaking of thanks to Kathleen and what I needed, I arrived @ Lesley yesterday at 4:01 to teach my 4:00 class (kept stalling at the hospital because I really wanted to see Lars post-anesthesia before I left, but wasn't able to) and what do I find perched on the table waiting for me but the first actual real Danish pastry I've laid eyes on since we were in Denmark. Not only is it amazingly fabulously wonderfully delicious, and from an actual Danish bakery in the area, but it's also my very very very very favorite kind of actual real Danish pastry (which has basically nothing in common with what is market here as Danish pastry) in the whole world.
There are only a few food things that bring me elephantine euphoria. That is one.
And, having gracously shared with Andey, Joa, Grandma, and Lars' night nurse, there is still half left. Mmmmmmmmmmmm.
Tuesday, January 30, 2007
most awful night
I think last night has a good chance of earning the most awful night in the hospital award. If Lisa Martino hadn't come to rescue me yesterday afternoon, helped me get Lars bundled up, AFOs on, and outside onto the playground for one trip down the slide while he felt okay (didn't get a picture), and then treated Andey & me to a lovely beer & dinner at Bertuchi's yesterday evening while Denise covered Lars, I might have ended up on the psych ward. As Lars & I wandered the halls sobbing last night, I was occasionally able to remember the bundling, the slide, the beer, the pizza, or a glimpse of Lisa singing "Stay Awake" (from Mary Poppins) for Lars, & how much he loved it. Her voice & snuggles are like a sedative for him.
After we got back from eating, Lars had a lovely dinner courtesy of Denise & then around 9:00 started just screaming and writhing in pain like we haven't seen in a number of days. We tried morphine & valium & tylenol, but nothing helped much or for long. At one point when we were lying down screaming, he threw up and again did not turn his head to the side. We've had this experience a couple times before and it's terrifying. He just lies on his back, throwing up all over himself. Each time, it has certainly appeared as if he might not have made it if someone hadn't been there to turn his head.
I can vouch for Lars' screaming until around 4:00 this morning, when I literally couldn't hold him or stay awake any longer. I put the rails up on our bed & lay him down with me, held him with one arm & I guess went to sleep.
At some point his screaming must have changed to wild boy kicking & the skinny little bugger kicked his way between the railings of the bed. The nurses found him on the floor kicking around 5:00. Okay, so now we build little pillow barriers between the railings.
Lars finally went to sleep for a little while around 7:00 a.m.
Most of our nurses here have been wonderful: responsive, smart, compassionate, and kind. Last night's nurse was just not what we needed; about a 2 on a scale of 1-10. Then there was Dr. Detachobitch who came to approve the valium when the morphine hadn't worked. The name says it all. Exactly what we didn't need.
About 11:30 today, Larsy went in with Andey for his spinal MRI under general anesthesia. I went to sleep here in the room. They said it would take an hour or so, but it's 2:30 now & they're not back. I need to shower before going to teach, but my roommates have been in the shower for the last 30 minutes. I really want to see Lars before I leave.
It appears this is the end of the road for the diagnostic tests they can think of to do for Lars. The talk now is of working with pain service long-term to try to manage his pain without knowing the origin or cause. "Chronic Pain NOS"?
Dr. Uninformative just came by and told me "you need some sleep." Brilliant.
After we got back from eating, Lars had a lovely dinner courtesy of Denise & then around 9:00 started just screaming and writhing in pain like we haven't seen in a number of days. We tried morphine & valium & tylenol, but nothing helped much or for long. At one point when we were lying down screaming, he threw up and again did not turn his head to the side. We've had this experience a couple times before and it's terrifying. He just lies on his back, throwing up all over himself. Each time, it has certainly appeared as if he might not have made it if someone hadn't been there to turn his head.
I can vouch for Lars' screaming until around 4:00 this morning, when I literally couldn't hold him or stay awake any longer. I put the rails up on our bed & lay him down with me, held him with one arm & I guess went to sleep.
At some point his screaming must have changed to wild boy kicking & the skinny little bugger kicked his way between the railings of the bed. The nurses found him on the floor kicking around 5:00. Okay, so now we build little pillow barriers between the railings.
Lars finally went to sleep for a little while around 7:00 a.m.
Most of our nurses here have been wonderful: responsive, smart, compassionate, and kind. Last night's nurse was just not what we needed; about a 2 on a scale of 1-10. Then there was Dr. Detachobitch who came to approve the valium when the morphine hadn't worked. The name says it all. Exactly what we didn't need.
About 11:30 today, Larsy went in with Andey for his spinal MRI under general anesthesia. I went to sleep here in the room. They said it would take an hour or so, but it's 2:30 now & they're not back. I need to shower before going to teach, but my roommates have been in the shower for the last 30 minutes. I really want to see Lars before I leave.
It appears this is the end of the road for the diagnostic tests they can think of to do for Lars. The talk now is of working with pain service long-term to try to manage his pain without knowing the origin or cause. "Chronic Pain NOS"?
Dr. Uninformative just came by and told me "you need some sleep." Brilliant.
Monday, January 29, 2007
MRI tomorrow
Jockey Doc came in apologetically and said that the MRI has been moved to tomorrow because of the anesthesia thang. Oh well.
Several folks have inquired as to the implications of Jockey Doc's name. It's because he looks like his alternate career could have been on horseback at the races. He's a nice guy.
At about 5 this morning our roommate slot filled with people: 2 adults, 2 teenagers & a little boy, all coughing & wildly contagious. Signs went up on the door for "contact precautions" and "droplet precautions," meaning docs & nurses coming in are supposed to wear gowns & gloves & masks.
I'm trying to visualize this curtain between our halves of the room somehow a germ barrier. I don't think 30 seconds go by without someone coughing over there.
Those of you whose emails I haven't answered, please forgive me. I'm way behind on email.
Nonetheless I'm going to try to sleep a bit with Lars now.
Several folks have inquired as to the implications of Jockey Doc's name. It's because he looks like his alternate career could have been on horseback at the races. He's a nice guy.
At about 5 this morning our roommate slot filled with people: 2 adults, 2 teenagers & a little boy, all coughing & wildly contagious. Signs went up on the door for "contact precautions" and "droplet precautions," meaning docs & nurses coming in are supposed to wear gowns & gloves & masks.
I'm trying to visualize this curtain between our halves of the room somehow a germ barrier. I don't think 30 seconds go by without someone coughing over there.
Those of you whose emails I haven't answered, please forgive me. I'm way behind on email.
Nonetheless I'm going to try to sleep a bit with Lars now.
brief update
Long weekend. Long night. Could have been way worse. My nightangel, Carylbeth, stayed until around 4 a.m. Wow, what a beautiful thing that was.
Lars slept 12:30 - 3:00 a.m., and then 3:30 - 4:07 a.m. We've had a long morning since then. He's on his third IV in the past 12 hours; we had a nice blood bath this morning when his IV cap popped off & squirted blood everywhere. But the amazing senior IV nurse who came to put a new one in was sooooooo skilled she made everyone else I've ever seen do an IV look like an amateur.
Lars has been npo since midnight. Any moment out of my arms and without movement this morning has been dreadfully bad, according to Sir Larsalot.
Lars had his Meckel's scan this morning, which involved injecting radioactive liquid into his veins and then nearly an hour and a half of lying flat on his back on a table under a huge camera, not being allowed to move, but with no sedation. They wrapped him up in a sheet like a burrito, then used dozens of wide pieces of tape to affix him to the table so he was unable to move. I sat in a tall chair next to his sweet head & tried to calm him.
He cried, I sang. We both dozed off a little in the middle somewhere, then he cried more & I sang more.
We don't have results yet. He's now blessedly napping.
They're making a plan for his spinal MRI, which hopefully will happen later today. Sounds like they may have anesthesia involved with that one because according to Nurse Iminchargeofmris, they don't do sedation on kids with reflux. Hmm, and we didn't talk about this on Friday because....?
I'll try to write more soon. Thanks for reading.
Lars slept 12:30 - 3:00 a.m., and then 3:30 - 4:07 a.m. We've had a long morning since then. He's on his third IV in the past 12 hours; we had a nice blood bath this morning when his IV cap popped off & squirted blood everywhere. But the amazing senior IV nurse who came to put a new one in was sooooooo skilled she made everyone else I've ever seen do an IV look like an amateur.
Lars has been npo since midnight. Any moment out of my arms and without movement this morning has been dreadfully bad, according to Sir Larsalot.
Lars had his Meckel's scan this morning, which involved injecting radioactive liquid into his veins and then nearly an hour and a half of lying flat on his back on a table under a huge camera, not being allowed to move, but with no sedation. They wrapped him up in a sheet like a burrito, then used dozens of wide pieces of tape to affix him to the table so he was unable to move. I sat in a tall chair next to his sweet head & tried to calm him.
He cried, I sang. We both dozed off a little in the middle somewhere, then he cried more & I sang more.
We don't have results yet. He's now blessedly napping.
They're making a plan for his spinal MRI, which hopefully will happen later today. Sounds like they may have anesthesia involved with that one because according to Nurse Iminchargeofmris, they don't do sedation on kids with reflux. Hmm, and we didn't talk about this on Friday because....?
I'll try to write more soon. Thanks for reading.
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