Oh brother....
Here we go.
I just got a note from school notifying me that Zach's class of fourth grade boys will be watching "the film" in March.
You know...
..."THE film".
And I quote, "a comprehensive K-12 curriculum on human sexuality".
And,as I was reading, and I came across that sentence,
I almost fainted.
YIKES!! :)
The fourth grade curriculum focuses on human growth and development.
And I quote,
"the identification of male and female reproductive parts and functions"
Oh boy.....
functions.
I'm having a minor mommy heart attack right now!!
I know...it's time, I get it.
I was a Principal and had to talk to parents about this every single year but...
...somehow...
it's ENTIRELY different when it's MY son!! LOL!!
All I can think about is how Brian and I need to talk to him BEFORE he watches
"the film".
And that pretty much makes me want to THROW UP!!!!
And sit in the corner in the fetal position and suck my thumb!!
I'm SO not ready for my baby to grow up....
...but he is and I have to deal with it.
BUT...
I don't have to like it.
I'm going to need a glass of wine...or 8...before I can even think about how that discussion is going to roll out!!
I'm honest and open and I know we can deal with the questions but...
I don't wanna!!!!!!! :)
I'm pretty sure that one of the topics in the film is wet dreams...
AHHHHHHHHHHH???????????????!!!!!!!!!!!!!!!!!!!!!!
I feel the need to repeat to myself 1 million times, "it'll be okay, it'll be okay...."
but I'm NOT buying it!!
And so it begins...the growing up thing.
I just hope my son doesn't raise his hand the entire movie.
That's the FIRST lesson I will teach him...
just DON'T RAISE YOUR HAND AND ASK A QUESTION because...
Zach has no filter,
is curious
naive,
EXTREMELY naive,
and is famous for his "Zachisms".
That is NOT a recipe for successful question-asking post "the film" showing!! LOL!
I'm going to tell him to write it down and bring his questions home. :)
And right now, in Heaven, there is a grandma angel laughing her HEAD off thinking about me dealing with this!! LOL!!
Lord grant me wisdom, clarity, and the ability to not run into the corner and suck my thumb in front of my son. :)
And please Lord, help me limit the use of the words, "girls have cooties, RUN away from them" to 2.4 million times during the discussion!! LOL!!
In the meantime, Braden brought home a cute little picture of a mouse he drew at school...
Thanks for keepin' it real B! :)
That is MUCH more my speed,
and likely the only thing keeping me from completely hyperventilating!! :)
Wednesday, February 20, 2013
Monday, February 18, 2013
My Mom...
My mom was...
...well...
...a lot like me (or vice versa)! :)
She was strict, no-nonsense, and pretty freaking funny (on the right day)!! :)
She was the one who took me t.p.'ing on Halloween for the first time!!
I never was late getting home because I didn't want to face her wrath, my curfews were early (11:00), and she tracked the mileage on my car to make sure I wasn't going places I shouldn't be going. I lived in a small town so if I went anywhere, she heard about it!! We didn't need GPS devices!! LOL!
Loretta Grace Nelson was an awesome mom and I loved her very much...
and we also clashed like the Titans because we were so much alike!! LOL! She was the Irish one in our family and I am the only one of the three of her children who got that gene. My brothers are like my dad...laid back!!!!
In December of 1983, my mom started acting crazy! She was talking like a nut and acting really insane. She grabbed her car keys and headed for the car. I stood outside the driver's side door trying to convince her to come back inside when I realized, she was going to go no matter what I said so I jumped in the back seat of the car very quickly. She tried to drive off with me half in and half out of the car. I climbed over the seat to the passenger's side front seat.
She wasn't making any sense. My mom didn't drink but I thought maybe she was drunk (I had just turned 18 and it was my senior year of high school). I kept asking her to stop and let me drive while asking her why she was acting so crazy!
She drove into town (we lived in the country) and started heading downtown...we flew through MANY red stoplights and finally I reached over and threw the car into park while we were slowed down at a red.
My mom threw it back in gear and started again, so I crawled on top of her and drove us into a parking lot of a bank, hit the brake, shut it off and grabbed the keys.
I got her talked into letting me drive us home, which I did and we walked back in the house.
These were the days before cell phones. I used the house phone to call my dad who came home from work.
We happened to be renting a house from a doctor and the doctor was down at the machine shed near the barn we were keeping our horses in so my dad went down to get him.
Mom started talking really crazy again and stood up and then she fell to the floor and had a seizure.
I called 911 and held my mom while turning her on her left side as the dispatcher told me to do.
About that time, my dad and the doctor walked in.
A few minutes later, the ambulance got there. They worked on mom and then everyone left. I sat in the living room shaken.
I got the keys to my pickup and went to the hospital after picking up all of the trash from the paramedics because I knew my mom would have a fit when she came home and found trash on the floor!
I was a "newbie" to the medical world, I didn't know she wouldn't be home that night.
They did a CT scan and determined that mom had a stroke and after several days, she came home and began the process of learning how to speak, walk and use her hands again.
We got through Christmas but mom still wasn't acting right. In April, she fell asleep in her chair while cooking supper and burned everything. My mom had NEVER burned a thing!!
Dad took her to the doctor and they did another CT scan. It showed a mass. My dad and mom went to Topeka for exploratory surgery to find out what it was on April 11, 1984.
I was working at a private Catholic boys' high school washing dishes, stocking shelves, serving food, and cooking sometimes.
My dad was the County Extension Agent and the Home Economist came into the kitchen where I was working and asked to talk to me.
She told me that they had opened mom up and found a brain tumor that was so extensive that they could do nothing for her.
I was dating a guy who was a freshman in college at the time and he came with me to Topeka (about a 4 hour drive). I kept it together really well until about an hour outside of Topeka when I got crazy dizzy and had to pull over, then he drove. I think that's when it sunk in that she was going to die.
We walked into the hospital and I went into mom's room and she opened her eyes, smiled, and said, "Hi Weesie" That was what my mom always called me.
I had watched my grandparents dying, and had gone through enough to know that my mom's protocol was "you never cry in front of them" so I stayed for a bit and then they kicked me out of her ICU room.
I cried then.
The doctors said they would do radiation to increase the quality of her life, not the quantity.
We brought mom home and dad and I took care of her.
She said she wanted to live long enough to go to my high school graduation...and she did. My mom came in a wheelchair with her wig on. She already could not speak but she was happy.
Dad and I cared for her as the cancer slowly overtook all of her body and functions. I remember the day that the hospice nurse asked if we wanted her to die at the house or in the hospital. We chose the hospital.
The last time I saw her alive, she just stared at me. We just looked at each other and I talked to her. She ripped out her IV line and blood went everywhere. The stupid nurse came in and said, "I wonder if she's trying to tell us something.."
I can't repeat what I said.
I'm pretty sure my mom smiled again!!
The night before she died, I had a dream.
In the dream, she was asking me to come see her because she was lonely and she wanted to see me.
I told her that I would be there in the morning but first I had to help with the 4-H booth at the sidewalk sale.
Then I had a vision of her floating and smiling and she said that she was okay, she was free and not in pain and she told me that she loved me and I told her that I loved her.
I woke up and was absolutely terrified because I thought she was dead. I could not move and I laid in bed for 3 hours until the sun came up.
July 19, 1984, I went to the sidewalk sale to help with the booth as planned (literally two blocks from the hospital). I was going to go to the hospital to see her after my shift ended at 11. My dad's secretary came to the booth to get me long before that.
She told me mom had died.
My mom very much believed that angels live around us and they are a part of our lives. And I KNOW that she has been a part of our lives through all of this cAncer mess!
Sometimes I just "know" stuff and I listen to that gut feeling and intuition. I have always (and will always) believed that it's mom trying to help me.
She is very much a part of our lives, but I so wish my boys could have had her in their lives here on Earth.
My mom and my daughter, Miranda, are our guardian angels and we are blessed to have them protecting and guiding us.
My mom has been watching and smiling from Heaven for every big event in my life, but I would give anything to hug her and look into her eyes one more time and tell her that I love her face to face.
Everything is perfectly timed and the lessons I learned while taking care of mom as she died have served me well while taking care of Braden.
I am a very lucky daughter to have had a mom like mine!!
...well...
...a lot like me (or vice versa)! :)
She was strict, no-nonsense, and pretty freaking funny (on the right day)!! :)
She was the one who took me t.p.'ing on Halloween for the first time!!
I never was late getting home because I didn't want to face her wrath, my curfews were early (11:00), and she tracked the mileage on my car to make sure I wasn't going places I shouldn't be going. I lived in a small town so if I went anywhere, she heard about it!! We didn't need GPS devices!! LOL!Loretta Grace Nelson was an awesome mom and I loved her very much...
and we also clashed like the Titans because we were so much alike!! LOL! She was the Irish one in our family and I am the only one of the three of her children who got that gene. My brothers are like my dad...laid back!!!!
In December of 1983, my mom started acting crazy! She was talking like a nut and acting really insane. She grabbed her car keys and headed for the car. I stood outside the driver's side door trying to convince her to come back inside when I realized, she was going to go no matter what I said so I jumped in the back seat of the car very quickly. She tried to drive off with me half in and half out of the car. I climbed over the seat to the passenger's side front seat.
She wasn't making any sense. My mom didn't drink but I thought maybe she was drunk (I had just turned 18 and it was my senior year of high school). I kept asking her to stop and let me drive while asking her why she was acting so crazy!
She drove into town (we lived in the country) and started heading downtown...we flew through MANY red stoplights and finally I reached over and threw the car into park while we were slowed down at a red.
My mom threw it back in gear and started again, so I crawled on top of her and drove us into a parking lot of a bank, hit the brake, shut it off and grabbed the keys.
I got her talked into letting me drive us home, which I did and we walked back in the house.
These were the days before cell phones. I used the house phone to call my dad who came home from work.
We happened to be renting a house from a doctor and the doctor was down at the machine shed near the barn we were keeping our horses in so my dad went down to get him.
Mom started talking really crazy again and stood up and then she fell to the floor and had a seizure.
I called 911 and held my mom while turning her on her left side as the dispatcher told me to do.
About that time, my dad and the doctor walked in.
A few minutes later, the ambulance got there. They worked on mom and then everyone left. I sat in the living room shaken.
I got the keys to my pickup and went to the hospital after picking up all of the trash from the paramedics because I knew my mom would have a fit when she came home and found trash on the floor!
I was a "newbie" to the medical world, I didn't know she wouldn't be home that night.
They did a CT scan and determined that mom had a stroke and after several days, she came home and began the process of learning how to speak, walk and use her hands again.
We got through Christmas but mom still wasn't acting right. In April, she fell asleep in her chair while cooking supper and burned everything. My mom had NEVER burned a thing!!
Dad took her to the doctor and they did another CT scan. It showed a mass. My dad and mom went to Topeka for exploratory surgery to find out what it was on April 11, 1984.
I was working at a private Catholic boys' high school washing dishes, stocking shelves, serving food, and cooking sometimes.
My dad was the County Extension Agent and the Home Economist came into the kitchen where I was working and asked to talk to me.
She told me that they had opened mom up and found a brain tumor that was so extensive that they could do nothing for her.
I was dating a guy who was a freshman in college at the time and he came with me to Topeka (about a 4 hour drive). I kept it together really well until about an hour outside of Topeka when I got crazy dizzy and had to pull over, then he drove. I think that's when it sunk in that she was going to die.
We walked into the hospital and I went into mom's room and she opened her eyes, smiled, and said, "Hi Weesie" That was what my mom always called me.
I had watched my grandparents dying, and had gone through enough to know that my mom's protocol was "you never cry in front of them" so I stayed for a bit and then they kicked me out of her ICU room.
I cried then.
The doctors said they would do radiation to increase the quality of her life, not the quantity.
We brought mom home and dad and I took care of her.
She said she wanted to live long enough to go to my high school graduation...and she did. My mom came in a wheelchair with her wig on. She already could not speak but she was happy.Dad and I cared for her as the cancer slowly overtook all of her body and functions. I remember the day that the hospice nurse asked if we wanted her to die at the house or in the hospital. We chose the hospital.
The last time I saw her alive, she just stared at me. We just looked at each other and I talked to her. She ripped out her IV line and blood went everywhere. The stupid nurse came in and said, "I wonder if she's trying to tell us something.."
I can't repeat what I said.
I'm pretty sure my mom smiled again!!
The night before she died, I had a dream.
In the dream, she was asking me to come see her because she was lonely and she wanted to see me.
I told her that I would be there in the morning but first I had to help with the 4-H booth at the sidewalk sale.
Then I had a vision of her floating and smiling and she said that she was okay, she was free and not in pain and she told me that she loved me and I told her that I loved her.
I woke up and was absolutely terrified because I thought she was dead. I could not move and I laid in bed for 3 hours until the sun came up.
July 19, 1984, I went to the sidewalk sale to help with the booth as planned (literally two blocks from the hospital). I was going to go to the hospital to see her after my shift ended at 11. My dad's secretary came to the booth to get me long before that.
She told me mom had died.
My mom very much believed that angels live around us and they are a part of our lives. And I KNOW that she has been a part of our lives through all of this cAncer mess!
Sometimes I just "know" stuff and I listen to that gut feeling and intuition. I have always (and will always) believed that it's mom trying to help me.
She is very much a part of our lives, but I so wish my boys could have had her in their lives here on Earth.
My mom and my daughter, Miranda, are our guardian angels and we are blessed to have them protecting and guiding us.
My mom has been watching and smiling from Heaven for every big event in my life, but I would give anything to hug her and look into her eyes one more time and tell her that I love her face to face.
Everything is perfectly timed and the lessons I learned while taking care of mom as she died have served me well while taking care of Braden.
I am a very lucky daughter to have had a mom like mine!!
Saturday, February 16, 2013
Zachism Day, #4
Saturday is Zachism Day. He is our 9 year old and he says the cutest and funniest stuff without even trying! :) Today's Zachism is just sweet!
The kitty had some surgery the other day.
(He doesn't like to talk about it, it's "personal"! :) )
We delayed telling Zach because we knew he would worry and be upset.
He's a VERY tender-hearted kid.
The morning of the surgery, we explained that Indy was going to spend the night at the vet's.
Zach was fairly hysterical,
and the only thing that made him feel better is that our former next door neighbor was our vet and he would be taking care of him.
When he realized he was going to spend the night at the hospital, he wasn't happy but he said,
"As long as Mr. Les is watching him, I can let him go. The kitty will ALWAYS be home in my heart!"
Pretty sweet moment!! :)
Love that kid!!
Happy Saturday!
The kitty had some surgery the other day.
(He doesn't like to talk about it, it's "personal"! :) )
We delayed telling Zach because we knew he would worry and be upset.
He's a VERY tender-hearted kid.
The morning of the surgery, we explained that Indy was going to spend the night at the vet's.
Zach was fairly hysterical,
and the only thing that made him feel better is that our former next door neighbor was our vet and he would be taking care of him.
When he realized he was going to spend the night at the hospital, he wasn't happy but he said,
"As long as Mr. Les is watching him, I can let him go. The kitty will ALWAYS be home in my heart!"
Pretty sweet moment!! :)
Love that kid!!
Happy Saturday!
Friday, February 15, 2013
Friday Funny...
This story truly shows why this blog is titled what it is! :)
Wednesday was the day for Valentines' parties at school, we didn't have school Thursday and Friday.
SO...I convinced my sweet friend, Amy, to let me take her to the second grade party, our sons are in the same class and she has been locked in her house for several weeks following some foot surgery.
I picked her up and we started to turn to head to the school when I saw a neighbor's dog roaming around. She was A.W.O.L. and was headed far from home!
So we stopped and called for her and she happily ran over! She is a sweet puppy and she was thrilled to see us! I grabbed her collar and quickly realized that she was not going to go quietly.
She was SOO excited, she wanted to play and she wanted to lick and she wanted to love and she wanted to run...
So we started walking to her house and she decided to make a break for it. It was like trying to stop a sled dog at the idatarod races!! She was pulling me and I was trying to hold on to her so she wouldn't run away when she kicked it into overdrive and bolted.
I tried to hang on...
I didn't want to lose her because I was afraid she would run away and I couldn't stand the thought of the little girls who are her owners crying because they couldn't find her.
Instead of hanging on,
when she pulled really hard...
...I fell flat on my face in the middle of the street!
That's when she ran back and decided this was AWESOME fun and she started licking and running away and then coming back, climbing over me, and licking again and again and again and again...
I was laughing so hard, I could not get up. And that was only egging her on!! :)
Amy was in the car and she later told me all she could see was my legs flying up in the air over and over as I rolled to stop the full facial licks!! She obviously couldn't get out because of her foot so she was helpless but cheering for me!!
I finally climbed to my feet but I was laughing so hard, I could barely stand!! I could see Amy in the car laughing her butt off!!
I called for the dog and she eagerly ran over and I told her we needed to go home and she just followed me!!
If ONLY I had tried that first!! LOL!!
We rang the neighbor's doorbell, she stood right beside me wagging her tail and ran in the house the minute he opened the door!!
I walked back to the car and Amy and I busted out laughing!
Seriously!!
Only the two of us...
We made it to school in time and the parties were awesome!!
We have SUCH amazing mommies who do great stuff at parties. The fourth graders had a sock hop and it was priceless!! The kids LOVED it and I got some great video of Zach doing the bunny hop!! The fourth grade mommies were AMAZING!! HOLY MOLY what a party!!
Braden loved his party and he actually participated in each center without any adults helping him AND I got to be in the room and he handled it AND he listened to the adults at the centers and did what they asked which is unheard of!!
In kindergarten, I couldn't let him see me or he would cry and beg to leave. I had to hide in the hallway and peek in when his back was turned. I sent my camera in with another mom and his amazing kdg teacher also took pics for me!!
In first grade, he would handle it for a bit but then cry and have to leave because it was too much noise and action.
But this party, he knocked it OUT!!! You wouldn't have known he was a child with autism if you walked in the room. I was very proud.
It's all thanks to the AMAZING teachers he has at his school!! Mrs. Rottinghaus who started him in KDG, Mrs. Haught who kept him going in 1st, Ms. Kumpf who is doing amazing things in second and his paras Ms. Kim and Ms. Jo who have helped him become independent!
We are SOO blessed!! Things could not have gone better at the parties.
I'm just going to try to be a better dog catcher next time!! :)
Wednesday was the day for Valentines' parties at school, we didn't have school Thursday and Friday.
SO...I convinced my sweet friend, Amy, to let me take her to the second grade party, our sons are in the same class and she has been locked in her house for several weeks following some foot surgery.
I picked her up and we started to turn to head to the school when I saw a neighbor's dog roaming around. She was A.W.O.L. and was headed far from home!
So we stopped and called for her and she happily ran over! She is a sweet puppy and she was thrilled to see us! I grabbed her collar and quickly realized that she was not going to go quietly.
She was SOO excited, she wanted to play and she wanted to lick and she wanted to love and she wanted to run...
So we started walking to her house and she decided to make a break for it. It was like trying to stop a sled dog at the idatarod races!! She was pulling me and I was trying to hold on to her so she wouldn't run away when she kicked it into overdrive and bolted.
I tried to hang on...
I didn't want to lose her because I was afraid she would run away and I couldn't stand the thought of the little girls who are her owners crying because they couldn't find her.
Instead of hanging on,
when she pulled really hard...
...I fell flat on my face in the middle of the street!
That's when she ran back and decided this was AWESOME fun and she started licking and running away and then coming back, climbing over me, and licking again and again and again and again...
I was laughing so hard, I could not get up. And that was only egging her on!! :)
Amy was in the car and she later told me all she could see was my legs flying up in the air over and over as I rolled to stop the full facial licks!! She obviously couldn't get out because of her foot so she was helpless but cheering for me!!
I finally climbed to my feet but I was laughing so hard, I could barely stand!! I could see Amy in the car laughing her butt off!!
I called for the dog and she eagerly ran over and I told her we needed to go home and she just followed me!!
If ONLY I had tried that first!! LOL!!
We rang the neighbor's doorbell, she stood right beside me wagging her tail and ran in the house the minute he opened the door!!
I walked back to the car and Amy and I busted out laughing!
Seriously!!
Only the two of us...
We made it to school in time and the parties were awesome!!
We have SUCH amazing mommies who do great stuff at parties. The fourth graders had a sock hop and it was priceless!! The kids LOVED it and I got some great video of Zach doing the bunny hop!! The fourth grade mommies were AMAZING!! HOLY MOLY what a party!!
Braden loved his party and he actually participated in each center without any adults helping him AND I got to be in the room and he handled it AND he listened to the adults at the centers and did what they asked which is unheard of!!
In kindergarten, I couldn't let him see me or he would cry and beg to leave. I had to hide in the hallway and peek in when his back was turned. I sent my camera in with another mom and his amazing kdg teacher also took pics for me!!
In first grade, he would handle it for a bit but then cry and have to leave because it was too much noise and action.
But this party, he knocked it OUT!!! You wouldn't have known he was a child with autism if you walked in the room. I was very proud.
It's all thanks to the AMAZING teachers he has at his school!! Mrs. Rottinghaus who started him in KDG, Mrs. Haught who kept him going in 1st, Ms. Kumpf who is doing amazing things in second and his paras Ms. Kim and Ms. Jo who have helped him become independent!
We are SOO blessed!! Things could not have gone better at the parties.
I'm just going to try to be a better dog catcher next time!! :)
Thursday, February 14, 2013
The Diagnosis, Part 2...
Right after we found out Braden had neuroblastoma, we began calling friends and family to let them know.
Without a doubt, the hardest phone call I had to make was to Braden and Zach's babysitter, Shawna.
Shawna was a second mom to my boys, they spent more hours with her than they did with me because I was working all day long and going back to work about 2 evenings per week.
I remember it like it was yesterday, I was sitting in the lobby at the hospital telling her about the diagnosis. We both held it together pretty well on the phone but I suspect she did the same as I did once I hung up. I completely lost it. I could feel her heart and her pain and it was so hard. We both tried to stay positive but it was really hard. I love that lady and her family so much!
The morning after we heard Braden had neuroblastoma, we were transferred to 4Hensen which is the Oncology floor at Children's Mercy in Kansas City.
I didn't want to go and I remember telling one of my friends that I was going to have to prepare myself to see kids with bald heads and sad faces.
I was wrong.
Yes, I saw sick kids with bald heads, but they were skating down the hallways on their IV poles, and racing on pedal tractors. One of the little sweeties who stole my heart was Chelsea. Chelsea would come to our door and peek in and if it was open, she came on in and that girl's smile made my day!! One day when the door was shut because Braden was in isolation she was outside the door grinning and smiling with her hands on the window and she licked the window. I laughed SO hard! It was so nice to laugh!
I stayed with Braden every night for his first 30 day stay. When I was at the hospital, I never left his room and rarely his bed as he wanted me to sit with him and snuggle. One of his hands had to be touching me all the time! And I didn't mind at all!!
Occasionally, I would sneak home to take a quick shower while Brian stayed with Braden but I spent every night with him.About a year later, I finally peeked into the parent room because I was curious. :) I never left his side until one night while I was talking to four year old Zach on the phone. Zach said, "Mom, I think dad would come down and stay with Braden if you wanted to come spend the night with me!"
Oh that stung my heart. He was right. So at some point after a couple of rounds, I went home and slept in the same house as Zach. cAncer had split our family into two parts. Braden and me at the hospital and Brian and Zach in the outside world visiting the hospital. The hospital was home to Braden and me.
All you want is for things to be "normal" again. You want your child to not have a central line with tubes hanging from his chest, you want him to not have the pain and side effects of chemo, you want him to play outside, you want him to be able to GO outside, you want to be able to hold your other child each night and tuck him into bed. You want to make your own bed, shower in your own shower, pick up the million toys your kids have strewn all over the house, be able to come and go as you please, fuss about spilled milk, wonder what you are cooking for supper, go to the grocery store, make your bed, clean your bathrooms, vaccum your carpet, fold your laundry, and to not have to think and worry all day and all night long.
It's tough to hear people talk about how their child spilled their spaghetti all over the kitchen and it was awful. I would have given my life to have that for one more day with my family instead of what we were doing.
Our world did a complete 180. We unexpectedly went from two incomes to one overnight. Our family of four was split in two. My career was halted and I LOVED what I did for a living! Some of the people I loved very much turned their backs because it was hard.
And, worst of ALL, we were given a 30% chance of survival for Braden.
Miranda had died already and I couldn't fathom losing Braden too. I kept picturing visiting two graves, having another funeral for one of my babies, and living with empty arms again!
This could NOT be happening! Why would God do this!?? I had been faithful and I trusted Him!
It was after we moved onto 4H and I looked around at the other faces on the floor, that I realized...
...this is NOT from God. GOD DID NOT DO THIS!!
The God I believe in does not "give" cancer to anyone, especially children.
To me, this is the work of the other guy. Only that guy could be this ugly and awful. Childhood cAncer is pure evil so it must be FROM evil! My God would NOT do this!
I believe that God is our salvation during this though. He was with us every moment trying to protect Braden.
My hope was that Braden would not have to go to Heaven to be cured like Miranda had.
Braden held his arm above his head most of the time to relieve the pressure of the massive tumor and he had a hard time opening his right eye the whole way.
After scans and a biopsy, we learned that Braden's disease was not confined to his torso, it was also in his pelvis, femur, various other leg bones, skull, and bone marrow. It was stage IV and high risk.
When Dr. Shore came in and did his diagnosis speech, it took 2.5 hours because I questioned everything he said. He was very blunt and honest and I liked that part. I didn't mince words either. The first thing he said after he told us all about Braden's disease was that we shouldn't blame ourselves for the missed diagnosis.
Momma Bear lit up! I told him that I didn't blame ME, I blamed all of the DOCTORS and then I told him part 1 of this diagnosis. He was speechless.
And out of that conversation, the hospital began using Braden's story as a teaching example so it wouldn't happen again.
Dr. Shore once asked me if it helped to know that they were using this as a hospital teaching example. I told him that I was thankful but no. I didn't help. It gave me hope for others but it didn't help me with Braden's missed diagnosis.
Neuroblastoma is 80% curable when found at stage I or II...30% is what he was given because it wasn't diagnosed when it was stage I or II in October!
DAMN!!!
I'm not that good of a person and I'm not that noble.
After Braden's biopsy, he developed a staph infection from the surgery (MRSA) and salmonella which appeared after his counts went down. He had an allergic reaction to the Vancomyacin used to treat his MRSA, and he had an allergic reaction to the betadine and dressings from surgery. He writhed and ripped at his skin because he was so itchy. We had to rub his skin 24/7 to keep him from breaking it open.
And this was all before he even started chemo! I'll tell you about that another day, but it landed us in the PICU with the belief that he was bleeding out.
An NG tube was put in to try to give him some nutrition. I held my breath and defended that tube 24/7 because I was sure he would pull it out with the autism.
The reality began to sink in.
And it sucked.
There was nothing I could do about it, and I'm a complete control freak!!
I just wanted to wake up from this nightmare.
I couldn't. This was now our life.
It is the life of too many!! 46 families have this day every single school day. And 7 families say goodbye to their babies who earn their angel wings...every school day.
It's too many. It has to stop!!
With HOPE and work, it will!!
People often ask what things are helpful to do and tell families after their child has been diagnosed. We had an amazing support sytem of friends who knew exactly what we needed when I didn't. Here are a few that were extremely helpful things they did for us:
PRAY and share the story so others can pray!
Email, write messages on blogs, send cards, just let us know you care! That is your connection to the outside world and you have NO IDEA how much it lifts your spirits and inspires you to keep fighting!!
Do NOT disappear, even if it's hard for you, if you want to remain in the family's lives! I lost many friends and family relationships because people just disappeared. Things don't "reset" after treatment. You change and if friends and family are not there to support and adapt, you don't have the same relationship.
Love us, even on our bad days. And don't judge! We may not make the same choices you would, it's our child, support us and be positive. Remember the golden rule! :)
And I'll just throw this one in, please don't send us crazy fads that are going to "cure cancer" like eating asparagus. That is insulting to us and not helpful.
Start a Meal Calendar! Meals were SUCH a help for Zach and Braden at home
House Cleaning: a group of friends paid for a housekeeper to come 2x a month...what a blessing!! This was INCREDIBLY helpful!
Take siblings who are at home on special playdates. That made a HUGE difference to Zach and it allowed me to have peace of mind knowing that he was being cared for in such a special way by so many loving,kind hearts!!
Make sure it's okay to visit before you do so, hospital time is crazy and there are times you just don't want to have visitors. You still want to hear from and talk to people, but there's a lot going on and you have to take care of your child. Germs are VERY bad and I wouldn't let visitors in for that reason. Your immune system is very compromised and one person with the sniffles could land you in the PICU.
And most of all...
...have faith and believe!!
Miracles happen!! :)
With HOPE!!!
Without a doubt, the hardest phone call I had to make was to Braden and Zach's babysitter, Shawna.
Shawna was a second mom to my boys, they spent more hours with her than they did with me because I was working all day long and going back to work about 2 evenings per week.
 |
| Shawna with Braden |
The morning after we heard Braden had neuroblastoma, we were transferred to 4Hensen which is the Oncology floor at Children's Mercy in Kansas City.
I didn't want to go and I remember telling one of my friends that I was going to have to prepare myself to see kids with bald heads and sad faces.
I was wrong.
Yes, I saw sick kids with bald heads, but they were skating down the hallways on their IV poles, and racing on pedal tractors. One of the little sweeties who stole my heart was Chelsea. Chelsea would come to our door and peek in and if it was open, she came on in and that girl's smile made my day!! One day when the door was shut because Braden was in isolation she was outside the door grinning and smiling with her hands on the window and she licked the window. I laughed SO hard! It was so nice to laugh!
I stayed with Braden every night for his first 30 day stay. When I was at the hospital, I never left his room and rarely his bed as he wanted me to sit with him and snuggle. One of his hands had to be touching me all the time! And I didn't mind at all!!
Occasionally, I would sneak home to take a quick shower while Brian stayed with Braden but I spent every night with him.About a year later, I finally peeked into the parent room because I was curious. :) I never left his side until one night while I was talking to four year old Zach on the phone. Zach said, "Mom, I think dad would come down and stay with Braden if you wanted to come spend the night with me!" Oh that stung my heart. He was right. So at some point after a couple of rounds, I went home and slept in the same house as Zach. cAncer had split our family into two parts. Braden and me at the hospital and Brian and Zach in the outside world visiting the hospital. The hospital was home to Braden and me.
All you want is for things to be "normal" again. You want your child to not have a central line with tubes hanging from his chest, you want him to not have the pain and side effects of chemo, you want him to play outside, you want him to be able to GO outside, you want to be able to hold your other child each night and tuck him into bed. You want to make your own bed, shower in your own shower, pick up the million toys your kids have strewn all over the house, be able to come and go as you please, fuss about spilled milk, wonder what you are cooking for supper, go to the grocery store, make your bed, clean your bathrooms, vaccum your carpet, fold your laundry, and to not have to think and worry all day and all night long.It's tough to hear people talk about how their child spilled their spaghetti all over the kitchen and it was awful. I would have given my life to have that for one more day with my family instead of what we were doing.
Our world did a complete 180. We unexpectedly went from two incomes to one overnight. Our family of four was split in two. My career was halted and I LOVED what I did for a living! Some of the people I loved very much turned their backs because it was hard. And, worst of ALL, we were given a 30% chance of survival for Braden.
Miranda had died already and I couldn't fathom losing Braden too. I kept picturing visiting two graves, having another funeral for one of my babies, and living with empty arms again!
This could NOT be happening! Why would God do this!?? I had been faithful and I trusted Him!
It was after we moved onto 4H and I looked around at the other faces on the floor, that I realized...
...this is NOT from God. GOD DID NOT DO THIS!!
The God I believe in does not "give" cancer to anyone, especially children.
To me, this is the work of the other guy. Only that guy could be this ugly and awful. Childhood cAncer is pure evil so it must be FROM evil! My God would NOT do this!
I believe that God is our salvation during this though. He was with us every moment trying to protect Braden.
My hope was that Braden would not have to go to Heaven to be cured like Miranda had.
Braden held his arm above his head most of the time to relieve the pressure of the massive tumor and he had a hard time opening his right eye the whole way.After scans and a biopsy, we learned that Braden's disease was not confined to his torso, it was also in his pelvis, femur, various other leg bones, skull, and bone marrow. It was stage IV and high risk.
When Dr. Shore came in and did his diagnosis speech, it took 2.5 hours because I questioned everything he said. He was very blunt and honest and I liked that part. I didn't mince words either. The first thing he said after he told us all about Braden's disease was that we shouldn't blame ourselves for the missed diagnosis.
Momma Bear lit up! I told him that I didn't blame ME, I blamed all of the DOCTORS and then I told him part 1 of this diagnosis. He was speechless.
And out of that conversation, the hospital began using Braden's story as a teaching example so it wouldn't happen again.
Dr. Shore once asked me if it helped to know that they were using this as a hospital teaching example. I told him that I was thankful but no. I didn't help. It gave me hope for others but it didn't help me with Braden's missed diagnosis.
Neuroblastoma is 80% curable when found at stage I or II...30% is what he was given because it wasn't diagnosed when it was stage I or II in October!
DAMN!!!
I'm not that good of a person and I'm not that noble.
After Braden's biopsy, he developed a staph infection from the surgery (MRSA) and salmonella which appeared after his counts went down. He had an allergic reaction to the Vancomyacin used to treat his MRSA, and he had an allergic reaction to the betadine and dressings from surgery. He writhed and ripped at his skin because he was so itchy. We had to rub his skin 24/7 to keep him from breaking it open.
And this was all before he even started chemo! I'll tell you about that another day, but it landed us in the PICU with the belief that he was bleeding out.
The reality began to sink in.
And it sucked.
There was nothing I could do about it, and I'm a complete control freak!!
I just wanted to wake up from this nightmare.
I couldn't. This was now our life.
It is the life of too many!! 46 families have this day every single school day. And 7 families say goodbye to their babies who earn their angel wings...every school day.
It's too many. It has to stop!!
With HOPE and work, it will!!
People often ask what things are helpful to do and tell families after their child has been diagnosed. We had an amazing support sytem of friends who knew exactly what we needed when I didn't. Here are a few that were extremely helpful things they did for us:
PRAY and share the story so others can pray!
Email, write messages on blogs, send cards, just let us know you care! That is your connection to the outside world and you have NO IDEA how much it lifts your spirits and inspires you to keep fighting!!
Do NOT disappear, even if it's hard for you, if you want to remain in the family's lives! I lost many friends and family relationships because people just disappeared. Things don't "reset" after treatment. You change and if friends and family are not there to support and adapt, you don't have the same relationship.
Love us, even on our bad days. And don't judge! We may not make the same choices you would, it's our child, support us and be positive. Remember the golden rule! :)
And I'll just throw this one in, please don't send us crazy fads that are going to "cure cancer" like eating asparagus. That is insulting to us and not helpful.Start a Meal Calendar! Meals were SUCH a help for Zach and Braden at home
House Cleaning: a group of friends paid for a housekeeper to come 2x a month...what a blessing!! This was INCREDIBLY helpful!
Take siblings who are at home on special playdates. That made a HUGE difference to Zach and it allowed me to have peace of mind knowing that he was being cared for in such a special way by so many loving,kind hearts!!
Make sure it's okay to visit before you do so, hospital time is crazy and there are times you just don't want to have visitors. You still want to hear from and talk to people, but there's a lot going on and you have to take care of your child. Germs are VERY bad and I wouldn't let visitors in for that reason. Your immune system is very compromised and one person with the sniffles could land you in the PICU.
And most of all...
...have faith and believe!!
Miracles happen!! :)
With HOPE!!!
Wednesday, February 13, 2013
The Diagnosis, Part 1...
From the time Braden was 6 months old, until Halloween night of 2007, there were a lot of hospital stays and visits.
His developmental problems had made themselves apparent and I really felt like there might be some sort of connection with all of his health problems and his developmental problems.
We had taken him to the Genetics Department of CMH to look for a couple of rare genetic syndromes. They were progressively regressive...meaning eventually terminal. They would result in him becoming progressively worse, eventually in a vegetative state, and then dying.
We were relieved to learn that he did not have those particular syndromes, but I still felt there was something there though.
Then came Halloween night.
Zach was Buzz Lightyear and Braden was Woody.
Braden was crying and could not be consoled. This was rare, but familiar. It always happened when he had pneumonia and we were entering another respiratory event.
So after trying to get him to go trick or treating with us, we gave up and took him to the ER.
They did a chest x-ray, as usual, but this time the doctor's eyes said something different. She said there was a small gray shadow in his liver.
She told us that she thought it was probably an enlarged liver due to a virus but she wanted us to stay overnight so they could do a CBC.
We did, Raggedy Andy was our doc. Seriously!! :)
The next morning a new doc came in (dressed as himself) and he noted that Braden's hemoglobin was 7.5 and that was almost at transfusion level. He felt like it was a dietary lack of iron that was causing it and that it was really just an enlarged liver due to a virus.
He couldn't have been more wrong.
He told us to follow up with our pediatrician, Dr. Shanker and he sent us home with iron drops to raise his hgb.
If you've read anything I've ever written, you know I did follow up. REPEATEDLY!
Braden started iron drops. He had told us it would take a few weeks. We went to our pediatrician two days after we were in the hospital and then back in two weeks for labs and another physical exam.
At that time, the pediatrician told me that his liver was normal size again and he didn't feel anything abnormal. His hgb was up to around 8 something so they wanted us to continue on the iron drops.
Braden wasn't eating much and was losing weight. He was very sleepy and very cranky (which was NOT Braden).
I continued to take him back in and each time they rolled their eyes and sighed because "she's back AGAIN!"
I once took Braden in for a weight check because he had lost SO much weight. His clothes were simply hanging off of him. The nurse was clearly frustrated with me and how many times we had been in and she said, "I don't know WHY you are here for a weight check, he has gained a pound since the last time you were here!"
I ripped Braden's shirt off and showed her his skeleton appearance with a big belly and said, "LOOK AT HIM!! THIS CANNOT BE RIGHT!!"
She literally sighed and said, "I don't know what to tell you...he's gained a pound!"
It was tumor weight.
BUT, I continued to take him back in. December 23, I took him in because he was really having trouble breathing. Dr. Shanker agreed that he wasn't moving much air on the right side. He prescribed steroids which is standard for asthma flares.
We did those and it didn't do any good. We got through Christmas and on December 28, 2007 right after Brian's parents got on a plane to head home, we went outside to play in the snow for a bit.
Braden was behaving just like he had on Halloween (only two months prior). SO..,we took him back to the ER out of pure frustration with our pediatrician.
All four of us went, which was rare but I just had a feeling that we all needed to be there. Angel whisper.
That night would change our lives forever.
They did another chest x-ray and this time the doc came in white as a sheet and showed us the picture. It was completely gray...that small shadow had exploded. It had completely compressed his right lung..that's why he wasn't moving air on that side. His liver and kidney had been squished down at the bottom of his torso and the tumor was approaching his heart.
She said she didn't know what it was but it could be cancer or it could be something progressively regressive in his liver.
I was voting for cancer. At least he would have a chance if it was cancer, he would not if it was something progressively regressive.
We drove Braden downtown to the hospital (no more ambulances where I couldn't be with him) and we were admitted onto the floor while they ran more blood and a urine test.
Yes...a urine test.
They put two cotton balls in his diaper and once they were wet, they ran an HVA/VMA test on them to see if those two proteins were in his urine at elevated levels. If so, that would indicate neuroblastoma.
Stop for a minute and let that sink in. All it took was TWO COTTON BALLS OF URINE!!
You have GOT to be freaking kidding me?!!!
WTH AGAIN!!!
The nurse who had been with us for two days, stayed late. I knew that wasn't a good sign. She would later tell me that she wanted to be there when he told us.
His HVA was over 250...the upper limit of normal is like 15.
The doctor told us that they would do scans and a biopsy to confirm staging but that it was neuroblastoma.
The nurse was crying and she gave me a huge hug. Then she told me that she was sorry but she was glad that we were Braden's parents. I didn't fully get that until much later, but when I learned how awful this cancer was and remembered the baby in the PICU who had a dark room with no family, I knew.
I asked the doctor for information about neuroblastoma and he said he didn't know anything about it but he suggested I look it up on the computer
SHUT THE FRONT DOOR!! SERIOUSLY??!! GOOGLE IT??!!!
WTH??!!!!
I reminded him that I hadn't planned on being in the hospital and had no computer with me!
He said he could try to print some things for me. THAT was my initiation into neuroblastoma.
I learned a lot in part one of the diagnosis meeting. First, doctors do not know everything.
MOMS KNOW THEIR BABIES!!! AND Doctors should LISTEN to us!
And I trusted NO ONE in the medical world. Every doctor from that moment forward had to earn even the tiniest respect and trust from me. I interrogate and debate every single thing any doctor tells me to the finite degree. They better be able to back it up with solid research that I can't poke any holes in for me to agree.
I didn't now WHAT was wrong with Braden, but I knew something was wrong and I tried repeatedly to get help for my son, but the pediatrician would not listen to me and brushed me off every single time I took him in.
I spent a LONG time trying to figure out how I was going to handle that. After Braden's diagnosis (just about a week after I saw Dr. Shanker for the last time in his office), he called up to talk to us at the hospital and he apologized for missing the diagnosis.
It was very fortunate for him that Brian took that call. Brian was calm, I tend to not be calm about things like that! :)
He wasn't the only doctor who missed it though...the doc we had after the overnight stay on Halloween missed it, pretty much every doc at the pediatrician's office had seen Braden and they all missed it.
What I had to tell myself is that no one tried to miss it. They just did! It's wrong and it put my son's life at risk but they mean to miss it.
It just proves the point that we MUST do a better job of educating the medical world on diagnosing childhood cancer. Missing these diagnoses is simply unacceptable.
They didn't know. Not okay so we are trying to change that through our foundation and through the actions I took after this with the hospital and the pediatrician (no, not a law suit).
But, we have to do better!! We CAN do better!!!
I have HOPE!!
I'll tell you part 2 of this story tomorrow, who we called, what it was like moving to the oncology floor, the biopsy, and the speech in which we learned about neuroblastoma for the first time.
Damn cAncer!!
His developmental problems had made themselves apparent and I really felt like there might be some sort of connection with all of his health problems and his developmental problems.
We had taken him to the Genetics Department of CMH to look for a couple of rare genetic syndromes. They were progressively regressive...meaning eventually terminal. They would result in him becoming progressively worse, eventually in a vegetative state, and then dying.
We were relieved to learn that he did not have those particular syndromes, but I still felt there was something there though.
Then came Halloween night.
Zach was Buzz Lightyear and Braden was Woody.
Braden was crying and could not be consoled. This was rare, but familiar. It always happened when he had pneumonia and we were entering another respiratory event.
So after trying to get him to go trick or treating with us, we gave up and took him to the ER.
They did a chest x-ray, as usual, but this time the doctor's eyes said something different. She said there was a small gray shadow in his liver.
She told us that she thought it was probably an enlarged liver due to a virus but she wanted us to stay overnight so they could do a CBC.
We did, Raggedy Andy was our doc. Seriously!! :)
The next morning a new doc came in (dressed as himself) and he noted that Braden's hemoglobin was 7.5 and that was almost at transfusion level. He felt like it was a dietary lack of iron that was causing it and that it was really just an enlarged liver due to a virus.
He couldn't have been more wrong.
He told us to follow up with our pediatrician, Dr. Shanker and he sent us home with iron drops to raise his hgb.
If you've read anything I've ever written, you know I did follow up. REPEATEDLY!
Braden started iron drops. He had told us it would take a few weeks. We went to our pediatrician two days after we were in the hospital and then back in two weeks for labs and another physical exam.
At that time, the pediatrician told me that his liver was normal size again and he didn't feel anything abnormal. His hgb was up to around 8 something so they wanted us to continue on the iron drops.
Braden wasn't eating much and was losing weight. He was very sleepy and very cranky (which was NOT Braden).
I continued to take him back in and each time they rolled their eyes and sighed because "she's back AGAIN!"
I once took Braden in for a weight check because he had lost SO much weight. His clothes were simply hanging off of him. The nurse was clearly frustrated with me and how many times we had been in and she said, "I don't know WHY you are here for a weight check, he has gained a pound since the last time you were here!"
I ripped Braden's shirt off and showed her his skeleton appearance with a big belly and said, "LOOK AT HIM!! THIS CANNOT BE RIGHT!!"
She literally sighed and said, "I don't know what to tell you...he's gained a pound!"
It was tumor weight.
BUT, I continued to take him back in. December 23, I took him in because he was really having trouble breathing. Dr. Shanker agreed that he wasn't moving much air on the right side. He prescribed steroids which is standard for asthma flares.We did those and it didn't do any good. We got through Christmas and on December 28, 2007 right after Brian's parents got on a plane to head home, we went outside to play in the snow for a bit.
Braden was behaving just like he had on Halloween (only two months prior). SO..,we took him back to the ER out of pure frustration with our pediatrician.All four of us went, which was rare but I just had a feeling that we all needed to be there. Angel whisper.
That night would change our lives forever.
They did another chest x-ray and this time the doc came in white as a sheet and showed us the picture. It was completely gray...that small shadow had exploded. It had completely compressed his right lung..that's why he wasn't moving air on that side. His liver and kidney had been squished down at the bottom of his torso and the tumor was approaching his heart.
She said she didn't know what it was but it could be cancer or it could be something progressively regressive in his liver.
I was voting for cancer. At least he would have a chance if it was cancer, he would not if it was something progressively regressive.
We drove Braden downtown to the hospital (no more ambulances where I couldn't be with him) and we were admitted onto the floor while they ran more blood and a urine test.
Yes...a urine test.
They put two cotton balls in his diaper and once they were wet, they ran an HVA/VMA test on them to see if those two proteins were in his urine at elevated levels. If so, that would indicate neuroblastoma.
Stop for a minute and let that sink in. All it took was TWO COTTON BALLS OF URINE!!
You have GOT to be freaking kidding me?!!!
WTH AGAIN!!!
The nurse who had been with us for two days, stayed late. I knew that wasn't a good sign. She would later tell me that she wanted to be there when he told us.
His HVA was over 250...the upper limit of normal is like 15.
The doctor told us that they would do scans and a biopsy to confirm staging but that it was neuroblastoma.
The nurse was crying and she gave me a huge hug. Then she told me that she was sorry but she was glad that we were Braden's parents. I didn't fully get that until much later, but when I learned how awful this cancer was and remembered the baby in the PICU who had a dark room with no family, I knew.
I asked the doctor for information about neuroblastoma and he said he didn't know anything about it but he suggested I look it up on the computer
SHUT THE FRONT DOOR!! SERIOUSLY??!! GOOGLE IT??!!!
WTH??!!!!
I reminded him that I hadn't planned on being in the hospital and had no computer with me!
He said he could try to print some things for me. THAT was my initiation into neuroblastoma.
I learned a lot in part one of the diagnosis meeting. First, doctors do not know everything.
MOMS KNOW THEIR BABIES!!! AND Doctors should LISTEN to us!
And I trusted NO ONE in the medical world. Every doctor from that moment forward had to earn even the tiniest respect and trust from me. I interrogate and debate every single thing any doctor tells me to the finite degree. They better be able to back it up with solid research that I can't poke any holes in for me to agree.
I didn't now WHAT was wrong with Braden, but I knew something was wrong and I tried repeatedly to get help for my son, but the pediatrician would not listen to me and brushed me off every single time I took him in.
I spent a LONG time trying to figure out how I was going to handle that. After Braden's diagnosis (just about a week after I saw Dr. Shanker for the last time in his office), he called up to talk to us at the hospital and he apologized for missing the diagnosis.
It was very fortunate for him that Brian took that call. Brian was calm, I tend to not be calm about things like that! :)
He wasn't the only doctor who missed it though...the doc we had after the overnight stay on Halloween missed it, pretty much every doc at the pediatrician's office had seen Braden and they all missed it.
What I had to tell myself is that no one tried to miss it. They just did! It's wrong and it put my son's life at risk but they mean to miss it.
It just proves the point that we MUST do a better job of educating the medical world on diagnosing childhood cancer. Missing these diagnoses is simply unacceptable.
They didn't know. Not okay so we are trying to change that through our foundation and through the actions I took after this with the hospital and the pediatrician (no, not a law suit).
But, we have to do better!! We CAN do better!!!
I have HOPE!!
I'll tell you part 2 of this story tomorrow, who we called, what it was like moving to the oncology floor, the biopsy, and the speech in which we learned about neuroblastoma for the first time.
Damn cAncer!!
Tuesday, February 12, 2013
Braden's first medical scare...
The cAncer mess was not Braden's initiation into the "scary medical world",
It was my first initiation into the world of "The Advocate Mom".
This was actually a very important set-up for the cancer mess and how we would negotiate it.
I think God times things perfectly and purposefully, but this was an extremely frightening ordeal and the docs weren't sure Braden's was going to make it.
When Braden was 4 months old, he had a cold. It kept getting worse. I had taken him to the doctor because I was concerned.
I really didn't get anywhere with Dr. Shanker, if I was a smarter person, I would have seen the foreshadowing and changed docs right then and there.
His cold got really bad and he was having a hard time breathing so I loaded both of the boys up (4 months and 21 months old) and took them to the ER. Brian was buying his truck and got there as quickly as he could.
They admitted Braden into CMH South.
His sats continued to get lower and lower and he was really struggling. They had done numerous breathing treatments and even had him in an oxygen tent. I continued to go out to the nurses' station and tell them things were not okay and he needed help. They said that they wanted him to struggle a little so his body could learn to fight. Finally, the charge nurse came in (I knew her personally) and took my concerns seriously!
His sats got into the 60's and I began to lose my patience. Finally, they decided to transfer him downtown so they could intubate him. About 4 months after this ordeal, we met the Head Doc of the hospital and I threw these numbers at him and the learning problems Braden was having. He believed that Braden's apraxia (speech) was caused by that lack of oxygen. Awesome!
I went with him in the ambulance but they do not allow you to ride in the back with the child. I sat in the front seat and fretted. I had never been to CMH before and I wasn't even really sure where it was located.
We had to wait in the waiting room of the PICU for a LONG time and finally they came out and told us that they had a difficult time getting a central line. I learned the term "fluffy" which is what they called Braden. :) It was a polite term for fat. :) He was a portly little guy...his thighs were huge and he had BIG BIG chubby cheeks. He was sooo cute!!
We finally got to see him and once we got in, one of us was in the room 24/7 with him. When we first walked in the room, I was taken back by how similar things were to Miranda's set up. Heart monitors, warmers, a ton of other monitors, and that ocsillating ventilator that made Braden vibrate. That is a sound and feeling that is something you never forget.
The PICU is like Vegas (but a WHOLE lot less fun!!)...you cannot tell when it is night or day and there are alarms going off all the time keeping you awake. At that time, they only had a wooden rocker in the room and I used to sleep on that rocker with my head on Braden's bed. I did not go home at all, I sat by our son and prayed. There is NO privacy at all!! None..you live in a glass cage with thin walls.
They used to kick me out to take a break, and I would just sneak back in. :) You can't have food in the room, but I would sneak it in my pockets ( I refilled from our locker when I left for 2 minutes to go to the bathroom) and that's how I ate. Shhh... :) I sat with Braden 24/7, sang songs to him (some we made up), and caressed his head and kissed him the entire time.
But, Braden wasn't getting better, he was getting worse and their interventions were not working. The docs were very worried and they had a very honest discussion with us.
We had heard enough "honest discussions" about reality and odds with Miranda to understand exactly what they were saying.
Many of our next door neighbors were getting better and moving out of the PICU, the little guy on one side of us had fallen into the ice in a lake and had been under water for 30 minutes before the fire fighters rescued him. The day we arrived, they told his parents he was brain dead. He woke up and was starting to talk. No kidding! An article in the Topeka paper months later was sent to me by a friend showing that he was doing well!! Amazing!!
Then there were the rooms that went dark. One of those rooms had a baby in it that no one visited. The hospital volunteers came in and rocked the baby and held her but no one that appeared to be family ever visited her. Then her room went dark. That one haunts me to this day. I asked if I could go rock her but the nurses said I couldn't because you have to be one of their volunteers. I understood but no baby should die alone. I was so grateful that Miranda died in my arms. She knew we loved her for her whole life. This sweet baby didn't have that and that was more sad than I can ever explain.
The doctors had tried various things to help Braden, and he wasn't responding. One of the docs told me that he had "wimpy white male syndrome".
I have a definition of what that means, :) but I was curious what THEIR definition was. :) They said that white male babies fight the least hard of all the babies they get in the PICU. I asked which babies fought the hardest and they told me that honor belonged to African American females. I can believe that!
SO...in an effort to fight "wimpy white male syndrome", I crawled into Braden's crib with him. I put his head on my shoulder just like Miranda's head was on my shoulder while she was alive and as she died and I told him that he was NOT going to get the same speech his sister had gotten. It was NOT okay for him to go to Heaven and rest. I needed him to fight. I needed him to stay with me.
About that time, the nurse (I like to call her Brunhilda) walked into the room and began to scream at me. "what was I doing in that crib...had I touched anything...blah blah blah blah blah".
I knew my way around those lines after Miranda, but she had me freaked out too with all of that ruckus. I got out of the crib and moved to the side of the room...she called in backup. And they all scurried around the room checking everything. The RT kept checking the monitors and it really was freaking me out!
I finally just asked what was wrong...had I done something to hurt him?
The RT had a confused look on her face and said that his sats actually looked stable, and even a little better!
Hmmmm.... REALLY!?!!
SNAP!!!
Brunhilda left the room, defeated. And I smiled!! :)
He continued to get better, we put him on a c-pap for 24 hours and then we were moved into a regular room 24 hours after that, 48 hours after that, we were home.
Whew...
And then two months later, it happened again!
This time, Braden was airlifted from South to downtown.
When we got down there, he hadn't been intubated yet and the doc said that he was going to let Braden struggle a little so his body could learn to fight.
I said no.
I then told them that I wanted them to do a c-pap again so that he could get help up front and not get so weak that his life was at risk again. We were NOT going to repeat last time and we needed to give him support NOW so it that didn't happen.
And I was that matter of fact, except I was louder than it looks on this page!! LOL!!
The doc literally threw his stethoscope into the wall and stormed out of the room. The RT looked at me and gave me the "uh oh" look. She followed the doc out. She then came back in and started messing with things and I asked her what the plan was.
She said they were going to start c-pap.
Great idea!
And 48 hours later, we were on the floor, and 24 hours later, we were home.
We then began exploring why this happened and Braden was diagnosed with asthma. We started preventative meds when he gets a cold. He's been in the hospital overnight several times but never again landed in the PICU for that reason...yup...there were other reason but not that one.
These two experiences taught me several things.
First, Braden is a fighter, he just needed to understand that he needed to fight!
And I learned how to advocate and fight. Doctors don't know everything and when you question them, tell them that. If you think they are wrong, fight them.
It's not like I'm going to invite them to go out to dinner so we can hang...they are there to do a job and I'm there to do fight for our son. We don't have to agree, but I am going to question (more like interrogate) :) and make them justify and defend every decision and action.
And when I think they are wrong, I throw my veto card..and say NO! We have that right as parents. It's one syllable...NO!
Those lessons served me well in the next phase of the medical world initiation...Braden's diagnosis.
Tomorrow, I'll tell you part one of that diagnosis. It's an extensive one in which many mistakes were made and the diagnosis was missed for two months with me continuing to follow up and use my big girl voice to argue.
I learned even bigger, better lessons through that missed diagnosis and those lessons would be the perfect storm to create "Momma D" oh sure, the hospital and docs have other "more colorful" names for me but Momma D is MUCH nicer!! LOL!! ;)
It was my first initiation into the world of "The Advocate Mom".
This was actually a very important set-up for the cancer mess and how we would negotiate it.
I think God times things perfectly and purposefully, but this was an extremely frightening ordeal and the docs weren't sure Braden's was going to make it.
When Braden was 4 months old, he had a cold. It kept getting worse. I had taken him to the doctor because I was concerned.
I really didn't get anywhere with Dr. Shanker, if I was a smarter person, I would have seen the foreshadowing and changed docs right then and there.
His cold got really bad and he was having a hard time breathing so I loaded both of the boys up (4 months and 21 months old) and took them to the ER. Brian was buying his truck and got there as quickly as he could.
They admitted Braden into CMH South.
His sats continued to get lower and lower and he was really struggling. They had done numerous breathing treatments and even had him in an oxygen tent. I continued to go out to the nurses' station and tell them things were not okay and he needed help. They said that they wanted him to struggle a little so his body could learn to fight. Finally, the charge nurse came in (I knew her personally) and took my concerns seriously!
His sats got into the 60's and I began to lose my patience. Finally, they decided to transfer him downtown so they could intubate him. About 4 months after this ordeal, we met the Head Doc of the hospital and I threw these numbers at him and the learning problems Braden was having. He believed that Braden's apraxia (speech) was caused by that lack of oxygen. Awesome!
I went with him in the ambulance but they do not allow you to ride in the back with the child. I sat in the front seat and fretted. I had never been to CMH before and I wasn't even really sure where it was located.
We had to wait in the waiting room of the PICU for a LONG time and finally they came out and told us that they had a difficult time getting a central line. I learned the term "fluffy" which is what they called Braden. :) It was a polite term for fat. :) He was a portly little guy...his thighs were huge and he had BIG BIG chubby cheeks. He was sooo cute!!
We finally got to see him and once we got in, one of us was in the room 24/7 with him. When we first walked in the room, I was taken back by how similar things were to Miranda's set up. Heart monitors, warmers, a ton of other monitors, and that ocsillating ventilator that made Braden vibrate. That is a sound and feeling that is something you never forget.
The PICU is like Vegas (but a WHOLE lot less fun!!)...you cannot tell when it is night or day and there are alarms going off all the time keeping you awake. At that time, they only had a wooden rocker in the room and I used to sleep on that rocker with my head on Braden's bed. I did not go home at all, I sat by our son and prayed. There is NO privacy at all!! None..you live in a glass cage with thin walls.
They used to kick me out to take a break, and I would just sneak back in. :) You can't have food in the room, but I would sneak it in my pockets ( I refilled from our locker when I left for 2 minutes to go to the bathroom) and that's how I ate. Shhh... :) I sat with Braden 24/7, sang songs to him (some we made up), and caressed his head and kissed him the entire time.
But, Braden wasn't getting better, he was getting worse and their interventions were not working. The docs were very worried and they had a very honest discussion with us.
We had heard enough "honest discussions" about reality and odds with Miranda to understand exactly what they were saying.
Many of our next door neighbors were getting better and moving out of the PICU, the little guy on one side of us had fallen into the ice in a lake and had been under water for 30 minutes before the fire fighters rescued him. The day we arrived, they told his parents he was brain dead. He woke up and was starting to talk. No kidding! An article in the Topeka paper months later was sent to me by a friend showing that he was doing well!! Amazing!!
Then there were the rooms that went dark. One of those rooms had a baby in it that no one visited. The hospital volunteers came in and rocked the baby and held her but no one that appeared to be family ever visited her. Then her room went dark. That one haunts me to this day. I asked if I could go rock her but the nurses said I couldn't because you have to be one of their volunteers. I understood but no baby should die alone. I was so grateful that Miranda died in my arms. She knew we loved her for her whole life. This sweet baby didn't have that and that was more sad than I can ever explain.
The doctors had tried various things to help Braden, and he wasn't responding. One of the docs told me that he had "wimpy white male syndrome".
I have a definition of what that means, :) but I was curious what THEIR definition was. :) They said that white male babies fight the least hard of all the babies they get in the PICU. I asked which babies fought the hardest and they told me that honor belonged to African American females. I can believe that!
SO...in an effort to fight "wimpy white male syndrome", I crawled into Braden's crib with him. I put his head on my shoulder just like Miranda's head was on my shoulder while she was alive and as she died and I told him that he was NOT going to get the same speech his sister had gotten. It was NOT okay for him to go to Heaven and rest. I needed him to fight. I needed him to stay with me.
About that time, the nurse (I like to call her Brunhilda) walked into the room and began to scream at me. "what was I doing in that crib...had I touched anything...blah blah blah blah blah".
I knew my way around those lines after Miranda, but she had me freaked out too with all of that ruckus. I got out of the crib and moved to the side of the room...she called in backup. And they all scurried around the room checking everything. The RT kept checking the monitors and it really was freaking me out!
I finally just asked what was wrong...had I done something to hurt him?
The RT had a confused look on her face and said that his sats actually looked stable, and even a little better!
Hmmmm.... REALLY!?!!
SNAP!!!
Brunhilda left the room, defeated. And I smiled!! :)
He continued to get better, we put him on a c-pap for 24 hours and then we were moved into a regular room 24 hours after that, 48 hours after that, we were home.
Whew...
And then two months later, it happened again!
This time, Braden was airlifted from South to downtown.
When we got down there, he hadn't been intubated yet and the doc said that he was going to let Braden struggle a little so his body could learn to fight.
I said no.
I then told them that I wanted them to do a c-pap again so that he could get help up front and not get so weak that his life was at risk again. We were NOT going to repeat last time and we needed to give him support NOW so it that didn't happen.
And I was that matter of fact, except I was louder than it looks on this page!! LOL!!
The doc literally threw his stethoscope into the wall and stormed out of the room. The RT looked at me and gave me the "uh oh" look. She followed the doc out. She then came back in and started messing with things and I asked her what the plan was.
She said they were going to start c-pap.
Great idea!
And 48 hours later, we were on the floor, and 24 hours later, we were home.
We then began exploring why this happened and Braden was diagnosed with asthma. We started preventative meds when he gets a cold. He's been in the hospital overnight several times but never again landed in the PICU for that reason...yup...there were other reason but not that one.
These two experiences taught me several things.
First, Braden is a fighter, he just needed to understand that he needed to fight!
And I learned how to advocate and fight. Doctors don't know everything and when you question them, tell them that. If you think they are wrong, fight them.
It's not like I'm going to invite them to go out to dinner so we can hang...they are there to do a job and I'm there to do fight for our son. We don't have to agree, but I am going to question (more like interrogate) :) and make them justify and defend every decision and action.
And when I think they are wrong, I throw my veto card..and say NO! We have that right as parents. It's one syllable...NO!
Those lessons served me well in the next phase of the medical world initiation...Braden's diagnosis.
Tomorrow, I'll tell you part one of that diagnosis. It's an extensive one in which many mistakes were made and the diagnosis was missed for two months with me continuing to follow up and use my big girl voice to argue.
I learned even bigger, better lessons through that missed diagnosis and those lessons would be the perfect storm to create "Momma D" oh sure, the hospital and docs have other "more colorful" names for me but Momma D is MUCH nicer!! LOL!! ;)
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