Showing posts with label Brinton Surgery. Show all posts
Showing posts with label Brinton Surgery. Show all posts
Friday, February 17, 2012
Today is the day!!!
As I write this blog post I'm sitting in a surgery waiting room with Jeremiah and Brinton. Today is the day Brinton will have his Halo Orthosis removed and we couldn't be happier. It's been 3 months and 6 days since it was placed on during his surgery in November.
When they did the surgery they fused together the top two vertebrae c1 and c2 using bone they grafted from his pelvis. To hold everything together they placed 4 screws and 2 metal rods into his spine. The halo is basically like a cast to hold everything stable while it fuses and heals. Brinton had a CT scan last week which showed that everything was healing and fusing the way it should. Today the Halo Orthosis will be removed and he will placed in a hard collar neck brace for the next month to continue his healing. We are very, very excited for this next chapter in the healing process to begin. So now we say good riddance to his halo...as one of my friends on Facebook said, "na, na, na-na, na, na, na-na, hey hey hey GOOD BYE!"
When they did the surgery they fused together the top two vertebrae c1 and c2 using bone they grafted from his pelvis. To hold everything together they placed 4 screws and 2 metal rods into his spine. The halo is basically like a cast to hold everything stable while it fuses and heals. Brinton had a CT scan last week which showed that everything was healing and fusing the way it should. Today the Halo Orthosis will be removed and he will placed in a hard collar neck brace for the next month to continue his healing. We are very, very excited for this next chapter in the healing process to begin. So now we say good riddance to his halo...as one of my friends on Facebook said, "na, na, na-na, na, na, na-na, hey hey hey GOOD BYE!"
Wednesday, February 1, 2012
17 Days Left...(Brinton Update)
It's countdown time 17 more days to go and then he can get that wretched halo OFF! Only 17 days! That's an eternity!!
Top 3 things Brinton wants to do when he gets his halo removed:
1. Take a normal shower or a 3 hour bubble bath because he is so entirely sick of sponge baths.
2. Wash and cut his hair. He hates his long, shaggy, unruly, icky hair and he is just ready to have nice, clean, nicely groomed hair.
3. Wear normal clothes. With the halo on we've had to modify all of his shirts to fit over the halo. He has missed being able to wear some of his favorite clothes and he is bored with plain white tees and hoodies.
Yesterday, we had to go to Children's Mercy to be seen for an infection in 3 of his pin sites. Deep down inside I was hoping they'd say "It's close enough....let's take it off today!". But alas they gave us antibiotic ointment and a prescription for some strong antibiotics to use for the next 17 days. Boo. So there are still 17 days.
After our little stint at Children's we went to get some energy out at the play place at Mcdonalds. Let me tell you for a boy who just a month ago was still using a walker to get around and sitting in a wheel chair for long distance, he was going so fast up those tubes he was making me nervous!
You know he could be sitting at home bummed for the next 17 days or whining about the pin site infection but here he is climbing to the top of a play set he really shouldn't be able to climb to the top of! He is seriously the happiest, most fun loving kid and he teaches me so much about life every day. 
Top 3 things Brinton wants to do when he gets his halo removed:
1. Take a normal shower or a 3 hour bubble bath because he is so entirely sick of sponge baths.
2. Wash and cut his hair. He hates his long, shaggy, unruly, icky hair and he is just ready to have nice, clean, nicely groomed hair.
3. Wear normal clothes. With the halo on we've had to modify all of his shirts to fit over the halo. He has missed being able to wear some of his favorite clothes and he is bored with plain white tees and hoodies.
Yesterday, we had to go to Children's Mercy to be seen for an infection in 3 of his pin sites. Deep down inside I was hoping they'd say "It's close enough....let's take it off today!". But alas they gave us antibiotic ointment and a prescription for some strong antibiotics to use for the next 17 days. Boo. So there are still 17 days.
After our little stint at Children's we went to get some energy out at the play place at Mcdonalds. Let me tell you for a boy who just a month ago was still using a walker to get around and sitting in a wheel chair for long distance, he was going so fast up those tubes he was making me nervous!
You know he could be sitting at home bummed for the next 17 days or whining about the pin site infection but here he is climbing to the top of a play set he really shouldn't be able to climb to the top of! He is seriously the happiest, most fun loving kid and he teaches me so much about life every day.
Monday, December 19, 2011
What a month!!
You've probably been wondering where I've been. (note:blogger is being all screwy and this post came out all weird)
First there was Brinton's surgery and home coming and adjustment to all that. Small tasks, like eating, require lots of help because he can't bring his head to the food and bringing the food to his mouth by himself doesn't always happen so gracefully. He is dressing himself completely, walking all over the place, playing like a normal boy (as much as he can of course) and healing so wonderfully. He is such an inspiration.
First there was Brinton's surgery and home coming and adjustment to all that. Small tasks, like eating, require lots of help because he can't bring his head to the food and bringing the food to his mouth by himself doesn't always happen so gracefully. He is dressing himself completely, walking all over the place, playing like a normal boy (as much as he can of course) and healing so wonderfully. He is such an inspiration.
The same day Brinton came home from the hospital Elise started mysteriously throwing up, which I thought was related to her asthma. She threw up every. single. day. for the next 28 days. She had test after test after test and no one could figure anything out (and no it wasn't an emotional thing...)I have seen so many doctors between Brinton's follow-ups and Elise's sickness that I don't ever want to see a doctor again. Finally, after a long trip and all day/all night stay at the Children's Hospital, they've diagnosed her with Idiopathic Gastroparesis. Basically, her intestines are "sleeping" and not able to digest her food along in a normal manner. They move really, really slow. What was happening was she was eating and since she couldn't move anything along, and she was so backed up, the food was just sitting there until she went to bed at night, when she would throw everything up. I. AM. SO. SICK. OF. PUKE. Luckily they've got her on some medicine and a new really strict diet and she hasn't thrown up in 4 days.*fingers crossed it sticks*
On top of that Aidan has developed the nastiest cough on the entire planet. It started a couple of weeks ago as a little cold and has now turned into these nasty coughing fits where he can barely catch his breath. Poor thing is so miserable. We finally got the dr. to give him some antibiotics and he seems to be doing a little better. (Just add his 3 dr. visits to the long list of doctor visits this last month)
And how do you think he got such a nasty cough? From his daddy.
So let's add Jeremiah to the nasty cough, repeated dr. visits list. He is going on week 5 of this, this...whatever it is. My poor, poor husband has the most disgusting, nasty, sickly cough in the entire UNIVERSE. His coughing fits have gotten so bad that he coughs until he literally passes out completly. Like 3 to 4 times a day!! Last week he passed out in the bathroom and hit his head so hard it was bleeding. CRAZINESS!! He is on medicine, too, but it really doesn't seem to be doing a dang thing. That picture, taken this evening, is a pretty good representation of what he has been doing the last couple weeks with every free minute he gets.
Ashlynne is healthy. Thank Goodness! She tried out for the school play last week and she made it in!! With a pretty big role! She is so excited.
Julianna had her Kindergarten Christmas Program a couple of weeks ago. She was so good! She knew all the words to all the songs and sang so pretty and so loud.
Liam had a little cold but he got over it pretty quick and he is back to the same old antics. He also got a hair cut because his curls were just getting way too crazy.
ME? Tired. Really tired BUT at least I'm healthy and holding up. However, I am so, so, so sick of taking care of sick people. I'm totally whining now but it's been like a month and a half. Thank goodness I never considered it as a profession because I would've made a HORRIBLE nurse. The last straw was when Elise came down stairs Saturday morning with PINK EYE! I seriously screamed. "KILL ME NOW!" (I'm so over dramatic)
So the way I look at it the Lord is planning on sending some really great blessings our way really, really soon and this is just the opposite of the "calm before the Storm"....the storm before the calm, maybe??
and now you know where I've been....
Wednesday, November 16, 2011
Tuesday, November 15, 2011
Post Surgery Update: Day #4 and TONS OF PHOTOS
So today is Day #4 post-surgery BUT technically Day #5 since surgery was Friday AND really Day #7 since we arrived here for Pre-ops and all that stuff....It's been a long, long roller coaster-y week. Brinton is doing AMAZING today and the Dr. this morning said it's likely he could be released today. I have a feeling based on some physical therapy things that still need to be accomplished we'll more than likely be released tomorrow. Yay! He walked a bit this morning with the walker but then was to tired to sit for more than 10 minutes in the wheel chair before he asked to go back to the bed. I'm thinking he is doing as well as can be expected and he is a rock star!
It's lunch time and I've had an actual moment to grab my laptop plug in my camera and download some pics. I think this calls for a QUICK RECAP, I'm going to try and pick some photos that represent the last several days...
Hanging Out at the Ronald McDonald House the Day Before Surgery
Mommy, Daddy, Brinton...Waiting, waiting, waiting...Day of Surgery
Brinton and one of his Surgeons (and favorite doctor)
Saying Goodbyes...On the Way to Surgery
PICU 1 hour Post-Surgery
Saturday: Day One Post Surgery - Ice Chips
Sunday Afternoon: Day Two Post Surgery - Visit from Family
Sunday Evening: Day Two Post Surgery - Sitting up for the first time
Monday Morning: Day Three Post Surgery - Playing the Wii
Monday Early Afternoon: Day Three Post Surgery - Sitting Up in the wheelchair!!
Monday Late Afternoon: Day Three Post Surgery - Small Steps with the Walker!
Monday Evening: Day 3 Post Surgery - Visit from his School Teacher and Get Well Cards
(Can you believe his teacher drove all this way to deliver him cards and presents?!)
Monday Evening : Day 3 Post Surgery - Game Night/Arts and Crafts (He sat in his wheel chair for 30 minutes before he started feeling icky and was ready to leave to go back to his room)
It's lunch time and I've had an actual moment to grab my laptop plug in my camera and download some pics. I think this calls for a QUICK RECAP, I'm going to try and pick some photos that represent the last several days...
Mommy, Daddy, Brinton...Waiting, waiting, waiting...Day of Surgery
Brinton and one of his Surgeons (and favorite doctor)
Saying Goodbyes...On the Way to Surgery
PICU 1 hour Post-Surgery
Saturday: Day One Post Surgery - Ice Chips
Sunday Afternoon: Day Two Post Surgery - Visit from Family
Sunday Evening: Day Two Post Surgery - Sitting up for the first time
Monday Morning: Day Three Post Surgery - Playing the Wii
Monday Early Afternoon: Day Three Post Surgery - Sitting Up in the wheelchair!!
Monday Late Afternoon: Day Three Post Surgery - Small Steps with the Walker!
Monday Evening: Day 3 Post Surgery - Visit from his School Teacher and Get Well Cards
(Can you believe his teacher drove all this way to deliver him cards and presents?!)
Monday Evening : Day 3 Post Surgery - Game Night/Arts and Crafts (He sat in his wheel chair for 30 minutes before he started feeling icky and was ready to leave to go back to his room)
Monday, November 14, 2011
Post Surgery: Day #3
So Brinton did pretty good yesterday (Day #2) although he was still experiencing quite a bit of pain. He was able to eat half of a small cup of Jello and drink some sprite and he kept it all down so that was pretty huge.
This morning I met very, very briefly with the Orthopaedic Surgeon and a nurse practitioner. They have a long list of things they would like for him to accomplish....TODAY. I'll admit I was concerned and a bit overwhelmed by it all but I see how much he is improving already and I'm feeling a little more settled.
As of right now he can sit on the edge of the bed, sit for an extended time in the wheel chair, he has eaten some bland foods (oatmeal, mashed potatoes), and walked a few steps using a walker!
The hospital really goes out of their way to make the kids here feel comfortable. He has been able to check out movies he likes, play the Wii at his bedside (it's adapted for kids who are unable to play the normal Wii on a normal tv...it's awesome) and tonight we are hoping to try and get him out of his room in the wheelchair to play some games at "game night."
Brinton continues to amaze me. He is so strong and determined. Gosh I love that boy!
This morning I met very, very briefly with the Orthopaedic Surgeon and a nurse practitioner. They have a long list of things they would like for him to accomplish....TODAY. I'll admit I was concerned and a bit overwhelmed by it all but I see how much he is improving already and I'm feeling a little more settled.
As of right now he can sit on the edge of the bed, sit for an extended time in the wheel chair, he has eaten some bland foods (oatmeal, mashed potatoes), and walked a few steps using a walker!
The hospital really goes out of their way to make the kids here feel comfortable. He has been able to check out movies he likes, play the Wii at his bedside (it's adapted for kids who are unable to play the normal Wii on a normal tv...it's awesome) and tonight we are hoping to try and get him out of his room in the wheelchair to play some games at "game night."
Brinton continues to amaze me. He is so strong and determined. Gosh I love that boy!
Sunday, November 13, 2011
Post-surgery Update
It's Sunday morning and I kept wanting to get to an actual laptop to download pics and write a proper post but it just hasn't happened. Thank goodness for the new blogger app on my iPhone because it's the only way I can keep the updates coming at this point. This will probably be pretty discombobulated but I'm a little lacking on sleep.
So Friday was pretty eventful.
Quick Recap: We arrived at the hospital at 10am and Brinton was taken back to surgery around 2pm. After 2 hours of positioning and placing the halo they began the procedure.
Hour 3,4,5 were fine.
Hour 6, I had a panic attack and tossed my cookies in the waiting room bathroom, kneeled on the floor of the bathroom for the next 20 minutes pleading with the Lord to take care of my boy. Talked on the phone to my sweet friend Shelley who called at just the right moment, snuggled into my husbands arms, cried some more, took some deep breaths and ate a salad.
Hour 7.5, 9:30pm, we met with the surgeons after the procedure was done.
We were told that:
1. his neck was really "loosey goosey" and it was definitely time to do the fusion.
2. His anatomy didn't allow for the fusion they were initially planning for so they went with a Plan B. Brinton now has 4 screws and 2 rods in his neck.
3. It was a really difficult case for them BUT they said they love being surgeons and they live for this stuff.....I never doubted he was in good hands.
4. They had no problem getting bone from his hip to graft into his neck....didn't even have to use donor bone.
5. He bled a bit but they did not wind up having to transfuse.
So, he was taken directly to PICU (pediatric intensive care unit) after surgery. They monitored him there until yesterday evening. He has done really well but has a lot of pain in his hip and neck. He is on a continuous pain pump that has a button he can push when he is in a lot of pain and it will give him a bolus amount of pain meds. He hasn't been able to tolerate anything by mouth yet except for ice chips. We tried less then an ounce of apple juice but his stomach promptly refused it. We saw the neuro doc last night and he said things looked good otherwise and we needed to just take it easy on the eating for right now.
Brinton has been moved to the normal floor now and we hopefully will see the ortho surgeon today. They are supposed to come tighten the screws on the halo today I guess. Oh and about that, the halo has 8 screws, 4 in front and 4 in back which are basically "bolted" in through his head and kind of rest at the skull. He is tolerating it fine. We turn him from Side to side every couple hours to keep him from being stuck on his back for too long.
So there is the best update I can muster right now. He has been watching a Harry Potter marathon on ABC Family and is in good spirits aside from the pain. I'm gonna go feed him some more ice chips. Thanks for your prayers, good thoughts, well wishes, and kind words.
I promise I'll get up some better photos soon.
So Friday was pretty eventful.
Quick Recap: We arrived at the hospital at 10am and Brinton was taken back to surgery around 2pm. After 2 hours of positioning and placing the halo they began the procedure.
Hour 3,4,5 were fine.
Hour 6, I had a panic attack and tossed my cookies in the waiting room bathroom, kneeled on the floor of the bathroom for the next 20 minutes pleading with the Lord to take care of my boy. Talked on the phone to my sweet friend Shelley who called at just the right moment, snuggled into my husbands arms, cried some more, took some deep breaths and ate a salad.
Hour 7.5, 9:30pm, we met with the surgeons after the procedure was done.
We were told that:
1. his neck was really "loosey goosey" and it was definitely time to do the fusion.
2. His anatomy didn't allow for the fusion they were initially planning for so they went with a Plan B. Brinton now has 4 screws and 2 rods in his neck.
3. It was a really difficult case for them BUT they said they love being surgeons and they live for this stuff.....I never doubted he was in good hands.
4. They had no problem getting bone from his hip to graft into his neck....didn't even have to use donor bone.
5. He bled a bit but they did not wind up having to transfuse.
So, he was taken directly to PICU (pediatric intensive care unit) after surgery. They monitored him there until yesterday evening. He has done really well but has a lot of pain in his hip and neck. He is on a continuous pain pump that has a button he can push when he is in a lot of pain and it will give him a bolus amount of pain meds. He hasn't been able to tolerate anything by mouth yet except for ice chips. We tried less then an ounce of apple juice but his stomach promptly refused it. We saw the neuro doc last night and he said things looked good otherwise and we needed to just take it easy on the eating for right now.
Brinton has been moved to the normal floor now and we hopefully will see the ortho surgeon today. They are supposed to come tighten the screws on the halo today I guess. Oh and about that, the halo has 8 screws, 4 in front and 4 in back which are basically "bolted" in through his head and kind of rest at the skull. He is tolerating it fine. We turn him from Side to side every couple hours to keep him from being stuck on his back for too long.
So there is the best update I can muster right now. He has been watching a Harry Potter marathon on ABC Family and is in good spirits aside from the pain. I'm gonna go feed him some more ice chips. Thanks for your prayers, good thoughts, well wishes, and kind words.
I promise I'll get up some better photos soon.
Friday, November 11, 2011
Updates...
I've been posting frequent updates on Facebook but I realize that there are several of my family and friends that are not on Facebook and will be checking my blog for updates as well.
1:50ish - Taken back to surgery.
4:00pm - call from the OR Nurse. They finished putting on his halo, positioning, and whatever-else they do....they are going to start the operation NOW. (I'm seriously amazed that it takes 2 hours for all the prep stuff. Wow. He was asleep for all of it)
6:30pm - call from OR nurse. Still in surgery. Doing well, minimal blood loss, stable. Surgery is still going to be awhile.
That's it for now. I'll update more as soon as I have more news. Thanks for you prayers. I really mean it!!!
***added updates***
8:30 nurse called: they are "closing" no time estimate as to when they'll be done but dr's will come talk with us soon
9:30 spoke with docs. Surgery was a pretty difficult case but they went to plan b and everything worked out ok. He is moving his hands and feet. He is in the Pediatric ICU recovering...we get to go up and see him now. More tomorrow...
1:50ish - Taken back to surgery.
4:00pm - call from the OR Nurse. They finished putting on his halo, positioning, and whatever-else they do....they are going to start the operation NOW. (I'm seriously amazed that it takes 2 hours for all the prep stuff. Wow. He was asleep for all of it)
6:30pm - call from OR nurse. Still in surgery. Doing well, minimal blood loss, stable. Surgery is still going to be awhile.
That's it for now. I'll update more as soon as I have more news. Thanks for you prayers. I really mean it!!!
***added updates***
8:30 nurse called: they are "closing" no time estimate as to when they'll be done but dr's will come talk with us soon
9:30 spoke with docs. Surgery was a pretty difficult case but they went to plan b and everything worked out ok. He is moving his hands and feet. He is in the Pediatric ICU recovering...we get to go up and see him now. More tomorrow...
Surgery Day
We were scheduled to be here at 10am and after a long, long, long wait he was finally taken back to the operating room at around 2pm. He was in good spirits when we parted.
Now we wait....
Here is an iPhone photo of Brinton right before he headed down the hall to surgery. I'll likely post more photos from my camera later today. Thank you for your thoughts, love, and prayers. We feel them!!!!
Now we wait....
Here is an iPhone photo of Brinton right before he headed down the hall to surgery. I'll likely post more photos from my camera later today. Thank you for your thoughts, love, and prayers. We feel them!!!!
Wednesday, November 9, 2011
Appointments, appointments, appointments...
Today was another day full of pre-op appointments. It started with Pre-admissions testing, then long meetings with anesthesiologists and specialists. After one last quick appointment with his orthopedic surgeon we met with Hangar Orthotics to get some measurements for his halo and vest. Days like this seem to last forever and you go from one end of the hospital to the other getting to each different person who wants to poke and prod at your child. It's exhausting. To relieve some "blahs" Brinton and I had a little dance party in the room while waiting to meet with his dr. (Thank goodness for itunes!) Then we took some goofy pictures. I love being silly with my boy, I'd do anything to make the day go faster for him. 
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