Dang. Said it three times and it still didn’t work. I’m still sitting here, at my impromptu desk on third floor of the hospital. I remember not-so-long ago when this seemed like home. But it’s been a long time since then, almost two years, I think.
For those new to the blog, my youngest son (he’s referred to as “George” on here) has a metabolic disorder. It’s called ornithine transcarbamylase deficiency, and if you want to read up about it, and George, knock yourself out. There’s a whole tab up on the top there. (And yes, spell check, I have spelled it right. Trust me.)
George’s condition makes him more susceptible to illness. But we have had a long run of good luck, and his immune system has bounced back amazingly. We haven’t had to deal with a hospital-stay-inducing illness in quite some time.
That was, until about midnight last night.
It started with a cough, followed by a sound that would wake the most sound sleeper from the deepest of sleeps…the sound of a child projectile vomiting down a flight of stairs.
George after getting settled in for what was supposed to be a simple bolus of fluids. Someday I’ll learn. 😉
Needless to say, my night was short, and I ended up bringing George down to his pediatrician after the other boys got on the bus. We stopped up at the hospital for a round of fluids, and were about to disconnect the IV to head home when I noticed a change.
George’s cheeks were flush, he was no longer talking or playing and he started to get “that” look. He was now running a fever.
When he gives me this face, he could ask for the world and I would readily give it to him. (As if I wouldn’t anyway.)
I was given the option to stick around for the evening, or take him home and see how the night went. I thought about it for a few minutes, and then when George asked to go to the bathroom, he had a dizzy spell coming back to bed. My mind was decided for me, we were sticking it out.
And so, here I am, after midnight. I’ve been awake about 24 hours, give or take a few minutes here or there…and yet, I cannot sleep. I watch him like a hawk, listen for his IV pump, hold my breath when he coughs, all those things that a parent does for their child.
Yet, as tired as I am, I know one thing: I am blessed.
And that’s all I need to know.
This is the George that I can’t wait to get back.
I’ll update in the morning about George’s progress and our (hopeful) discharge home. Fingers crossed for a peaceful night…well, what’s left of it.
I’m suffering from a case of Mommy-guilt. A bad case. Normally when I think of Mommy-guilt, it’s involving moms that work, but that’s not my case. But it doesn’t make it any less painful.
It started about 3 years ago. Shortly after our youngest was born, I started to have a feeling that something wasn’t right. Late-onset jaundice that took almost two weeks to improve, body tone that didn’t seem quite right, lack of growth…it was all screaming at me, loudly.
After numerous doctor’s appointments, some helpful, some not, we ended up traveling to Mayo for answers. We’ve been coming here ever since.
The Mommy-guilt started then. At first, before we knew what we were dealing with, it was simply that I wasn’t around for my other children like I wanted to be. Our poor 5-year-old would be dropped off at our drop-in daycare and I would be off to an appointment, only to have George admitted and I wouldn’t be home for a few days.
It was traumatic for him…and for me.
And now, here I am again, except this time with my father. I will miss Trick-or-Treating tonight, Parent-Teacher conferences tomorrow and a slew of other little events. The kids know I’m with Grandpa at the doctor’s. They call and give me updates. We have a wonderful young lady who is more than willing to step in and help my husband keep the kids on track.
As I mentioned earlier this week, we leave next week for another round of appointments at Mayo. As I was thinking about what I needed to get done to be ready for the trip, I started to think back about how much our lives have changed in these few years. And I am so very, very thankful.
I used to preface every appointment, every meeting, every date with a friend with the statement, “Well, if George isn’t sick…” or “Barring any unexpected hospital trips…”
I haven’t done that…in a very long while. In fact, George hasn’t been to visit his friends on the Peds floor since the beginning of March. And I need to thank all of you for helping us get to where we are today. You have all helped with your kind thoughts, your prayers and your offers to help – and your understanding that sometimes I just need a place to vent.
It’s been a long road, and I know we’re no where near at the end of our journey, but at the lull in the storm, I thought I would just give you all a simple, “Thanks.”
George and his favorite “big sister,” Miss A.
And I owe the Big Guy upstairs the biggest thanks of all, but He already knows…we’re close like that! 😉
It’s hard to believe that it’s been 3 years. Three long, crazy years that I was never sure we’d make it through.
George, summer 2010, before we started his low-protein diet. With his skinny little chicken arms, tiny legs and minus any fat.
The beginning of October is the anniversary mark of our trips to Mayo in Rochester with George. Sometimes I find myself staring in those big, beautiful eyes of his, and I am amazed at where we were and how far we’ve come.
How will we celebrate such an anniversary? Well, with a trip to Rochester, of course! Actually, we’re pretty lucky because our trips are now down to twice a year (barring any bumps in the road).
So, as we prepare for another series of doctor’s appointments, please keep George in your prayers. Things have gone so well the last several months, I’m just hoping and praying for continued good health and no hiccups in his blood work.
George, summer 2012 – all sass and attitude! Full of life, love and a true blessing through and through!
It’s been a long road, but you frequently find the best trips are the ones that take awhile to get there. Right?
I wrote this post last year about Good Friday falling on Earth Day…and how my son mistakenly thought that was the reason he didn’t have school. Although today isn’t Earth Day, when you have a rough week, it’s a comfort to know that there are days such as Good Friday to give you hope and remind you of the sacrifices made:
I was all prepared to write a post today about all the things we do on the farm that celebrates the Earth, such as using our manure, using no-till whenever possible, using the water from our well to heat our home…then heat our shop…then to water our cows, etc. (That’s right, all the same water, I’ll explain it sometime.)
But as I was sitting down to type last night, I decided to check out George’s lab work that was done at Mayo. (They have a really cool set-up, where you can register to log-in and receive the lab results yourself. No more waiting for that stinkin’ doctor’s call!) Anyway, I logged-in and for the first time ever, and I truly mean EVER, all of George’s lab work came back within normal ranges! (Well, minus the Vit. D and iron levels, but those are diet/sunshine related, not illness/disorder, so they don’t really count.)
I’ll admit it, I cried a bit. For the last just-about 2 years, I’ve dealt with continuously feeling like something wasn’t right, that we weren’t on the right track, bloodwork continuously showed something off here or there, nothing fit together, etc. It was a whirlpool of nightmares. Since George was born, he has seen: three pediatricians, two pediatric geneticists, two pediatric gastroenterologists, pediatric cardiologist, two pediatric endocrinologists, two pediatric neurologists, two dieticians, pediatric oncologist, pediatric neurosurgeon and several other various ER docs, nurses and staff. He has had: two colonoscopies, an upper GI series, multiple x-rays and ultrasounds, a liver biopsy, three MRI’s, an echocardiogram and two CT scans. He has given more blood for bloodwork that some people donate to the blood bank. He’ll be 2, and he’s been through so much, but is still such a wonderful little boy.
One of the things that I hear the most, when people hear about George, is that he doesn’t LOOK like anything is wrong with him. That’s always the problem. I wonder how many of those doctors blew us off because they felt he didn’t “look” sick enough. I know for sure one did, I overheard him tell the students that were following him those exact words. It went something like this, “And in this room is a 6-month-old male patient, case seems somewhat unremarkable. Mother has sought care at Mayo. Came in with fever, slight dehydration, etc. There’s no clear diagnosis, and I’m not real sure why they’re here. Their local hospital probably overreacted. We’ll keep him through tomorrow to satisfy the Mother.” (Needless to say, I requested a discharge immediately and we never returned to that set of physicians.)
We have so much to be thankful for.
This morning, Big Bro told me that they didn’t have school today because it was Earth Day. That sealed the deal for me. I’m not writing about our farm today. I’m not writing about how to recycle, or how to reduce your carbon footprint, or how to reuse your milk carton to make a mailbox. We should all know these things, and we should all be doing them. Every day. Period.
But today is Good Friday first. It’s a day that we celebrate all that has been given for us. The Blessing that was bestowed upon us so many years ago. And for me, today is a day of thankfulness.
Yes, I won’t be brushing my teeth with the water on, I’ll turn off lights where I don’t need them, our bulbs are already energy efficient. Those are things we do everyday. But today, I’ll spend extra time thanking God for those gifts that He has given. Including the ultimate sacrifice of His only Son.
I regularly hear people talking about the amount of time that is wasted on social media. When people ask what I do, and I tell them that I blog about our farm and our family, it’s almost as if I just told them I’m a stay-at-home mom…oh, wait…
"George" and I...towards the beginning of this journey. It's amazing the changes that have been made, to both of us.
My point is, that neither my chosen profession nor my hobby gets much respect in the real world. (You can decided which is which.) That doesn’t bother me, and for the most part, I ignore it…but last night it became very clear to me that all of my work and time “wasted” has not been in vain.
For those that have been following along a little while, you know that our youngest son, “George” on the blog, has been diagnosed with OTC. (You can read more about it on the OTC tab above.) It’s been a very crazy ride, but we’re feeling our way through, and have seen some amazing results in the last year.
But that doesn’t mean that we haven’t had problems, or that there were times when I wasn’t really sure who to turn to for answers, venting, etc.
And then I received an email. And not just any email, an email from the Executive Director of the National Urea Cycle Disorder Foundation, which just so happens to be the link I use in my blog posts describing OTC. Yeah, that’s big.
I think back to that meeting in August, almost two years ago, where I finally met JP in person. There was a round-table session where you could just sit and ask different people questions relating to social media. I sat at her table and asked if she thought that my story was worth telling (we had been “connected” through Twitter). I thought that my connections through Twitter and facebook were probably enough, maybe a blog would be too much, and maybe I didn’t have anything to really share.
With her encouragement, I started Wag’n Tales in September of 2010…and the rest, as they say, is history.
And I’m not the only one that Janice has positively influenced through social media. Just check out her latest blog post and see.
Yes, social media can take away time. It can be used for evil and wrong-doing. But when it’s used in a positive way, it can truly be life-changing…
Today’s post is mostly wordless by me…following you will find another survivor’s story, this one by Heather Von St. James. We are all given so much, and sometimes we don’t realize the “village” we have, until we need it.
And please, don’t forget to click on the blue angel in the right-hand corner! We need more angels and more gift suggestions! Let’s make this a season of giving!
The Strength of My Village
When a mother announces her pregnancy, a village surrounds her. Family, friends, co-workers and even strangers offer support and advice. This happened to me in 2005. On August 5, my husband and I welcomed our daughter Lilly into our family. Our village surrounded us in the hospital with well wishes as they met our daughter. In the months and years to come, I would realize how much I needed their support.
As the partial owner of three successful salons, I supervised 20 employees at one location and worked behind the chair until the day Lily was born. After a few weeks at home with my baby, I regretfully returned to work. Unenthusiastically, I accepted a location switch and a lighter workload. I really only wanted to be home with my child!
Motherhood brings health changes such as weight fluctuation, lack of energy and tiredness, but I soon began to experience severe symptoms. After losing an average of six pounds a week, I consulted my doctor. Blood work and a chest x-ray revealed fluid build-up around my left lung. The doctor prescribed more tests. On November 21, 2005, my medical team discovered the source of my unusual symptoms. In the lining of my lung, I had cancer called malignant pleural mesothelioma. Caused by asbestos exposure I had experienced as a child, the diagnosis came just three and a half months after precious Lily was born.
The doctors gave me 15 months to live, and my thoughts flew to my husband and child. I wanted to do whatever it took to save my life. My husband and I decided to pursue drastic treatment. On February 2, I underwent extrapleural pneumonectomy in Boston. Specialists removed cancer-laden organs and tissue and administered heated chemo to remove all the cancer. I spent 18 days in the hospital recovering from surgery. Two months of additional recovery prepared my body for chemotherapy then radiation. I survived the horrid medical treatments with help of my village.
My parents took Lily to live with them in South Dakota where my childhood friends and people from my church surrounded my parents who both worked full-time. They babysat Lily and made meals. Halfway across the country, my baby learned to roll over and eat solid food. So we could watch her grow, my mom emailed pictures of Lily that my husband printed out. In black and white, I watched my little girl grow and change. I fought for my life because of my daughter.
Five years later, I rejoice that I can stay home to care for my child. As we embrace life, Lily has learned to give to others in need. She befriends everyone she meets and really thrives because of the family, friends, and strangers who surround us. Because of the cancer diagnosis, I remain thankful for my many blessings. With the bad comes good, and my family appreciates every moment thanks to our village who so generously supported us then and continues to support us now.
Normally on Monday, I would post a “Hunk of Meat Monday” recipe, to share with those that enjoy having protein in their diet and I would link up with Beyer Beware’s linky party…but not today.
Our household is a very unique situation. We farm. We ranch. And our son is a vegan. Actually, that doesn’t quite cover it, but it’s close. He is limited in the amount of protein that he can have. Right now his limit is 11-12 grams of protein. To put that into perspective, an 8 oz. glass of milk has about 8 grams of protein in it. So, in theory he could have a glass of milk, but then he could only have one slice of bread for the rest of the day.
What it means is that he doesn’t eat meat. And according to his dietician, he will probably never eat meat. And I’m perfectly fine with that.
George’s body can’t break down protein. When he consumes protein, it can cause a reaction in his body that can elevate his ammonia levels, cause his brain to swell, cause seizures, make him hyperactive, etc. In a nutshell, it can be life threatening.
Last week Monday, I had a package of beef jerky in the fridge. Now, normally I don’t keep those kind of snacks in the house. Many times I just leave them in the shop fridge, because my husband likes to snack on them during harvest. But for some reason, I brought some in the house.
Now, mind you, George has never really had meat before. Due to his medical issues and not knowing what was all going wrong, but knowing that he didn’t tolerate table food very well, George was on a special formula for much longer than you normally would have a child on a liquid-only diet. In fact, George had just started eating some table food just about a year ago. He was 18 months old. It was January when we learned that we would probably need to cut protein out of his diet, and finally had a plan.
Well, apparently George is curious. And he ate two sticks of beef jerky. I was working on folding clothes, and noticed that he was chewing on something. He showed me the tiny bite that was left in his mouth, promptly spit it out for me, and then I checked the fridge, realizing that not one, but two sticks were out of the package.
We’d never had this problem, so I wasn’t sure what to do. I called his neurologist, who was on vacation. Her back-up was paged…she was on vacation. So a third person was contacted, who told me that she was going to be no help. So another neurologist was paged. And while waiting for her to call back, I called our pediatrician, who was out of the office. His nurse was very supportive, and told me that when I heard back, to let them know what they needed to do.
Under normal circumstances, were George to have issues relating to his OTC, I know what to do. I take him to the ER and hand them my letters from the doctors that give step-by-step instructions on how to care for him. But that’s what I do AFTER he’s having an “episode.” I had never had to deal with a situation in which he MIGHT have an episode.
Well, I finally heard back, and the doctor gave me some wonderful words of wisdom…like, “Don’t give him any more protein today.” Thank you, Captain Obvious. I figured that one out on my own. And, “Watch for signs of distress.” Whew. So glad I called. That really put me at ease. (By the way, that’s dripping heavily with sarcasm.)
Needless to say, I quickly learned one of George’s reactions to too much protein. He becomes off-the-wall, crazy hyper. Similar to what I would imagine a 2-year-old would act like if they were given 3-4 Mountain Dews. Seriously. He had snuck the beef jerky at about 2 that afternoon. He finally went to sleep around 1…Tuesday morning. It was crazy. But he survived, and so did I.
The point of all this?
I get the need for some people to be vegetarians, vegans, not eat meat, however you want to word it. I completely understand. I know, because I’m living it.
Here’s what I don’t like:
Don’t tell me that not eating meat is healthier for you. I know what the body needs. I know what children need. I’ve been researching it for months. I work with dieticians at Mayo Clinic. Trust me. I know. I also know what it takes to replace the nutrients and protein that you automatically get from meat. I know how dangerous it can be to try to live without those proteins. I know what the formula that my son will be using for the rest of his life smells like, tastes like…I’d rather eat a steak. (There are more than 25 different cuts of meat that are lean and healthier options, if that’s the kind of thing you’re looking for.)
Don’t tell me that livestock aren’t cared for properly. I know how they’re cared for, because I live it. We take care of our cattle, day-in, day-out, 24 hours a day, 365 days a year. Through blizzards, through hot streaks, in the spring, in the fall, you name it. If we need to be gone, we arrange for someone else to take care of them. It’s our responsibility and something we take very, very seriously.
This is our herd today.
Talk to me about your concerns. If you have heard something about animal care that concerns you, ask. Don’t just assume that whatever you see, hear is the truth. If you need to, come to my farm and look. (In fact, I’m connecting a video that our state Farm Bureau put together, showing you our farm, and telling others about why we do what we do…check it out. And remember, this was three years and one child ago!)
Don’t watch a movie and assume that what you see and hear is the truth. Movies are made to make money. Happy stories don’t sell as many copies as scary ones do…and don’t cause as much media hype. If you watch a movie, and it makes you think and have questions, then take those questions and ask a farmer. Don’t assume that the movie is going to give you the answers.
Sorry this became a little long-winded, but it’s a subject that hits close to my heart. As I said in the beginning, I completely understand the need for some people to limit their meat intake, or choose not to eat meat at all. I’m fine with that. Just please, please don’t tell me that I’m less of a person for enjoying my meat-eating lifestyle…and for being just a little sad that George can’t enjoy the same.
Today was our first day here in Rochester for our fall checkup. We have met with the dietitian and got some really great new ideas for George’s diet.
For example, she gave me the idea of grilling a portabello mushroom (the great big cap) and topping it with a bit of salsa and a little bit of shredded cheese, to make it resemble a burger. What a GREAT idea! (I just hope George goes for it!)
We’re also going to be in contact with a chef that has a daughter that follows a low-protein diet…can’t wait to get some more ideas and recipes!
But I would like to give a big shout out to those people that have been so amazing and have made me feel like I was at Scooter’s coronation activity today. Scooter was named Little Mr. Ellendale last fall, and that meant that him and Little Miss Ellendale would be part of the high school Homecoming ceremony.
Unfortunately, this is Homecoming week…and I couldn’t reschedule this appointment again. So I missed it, but not really. Not one, not two, but at least THREE different people took photos for me. And truthfully, it probably went better than if I would have been there.
Scooter, escorting some beautiful women!
Little Miss and Little Mr. Ellendale - future Homecoming royalty???
The beautiful thing about living in a small town is that you can ask someone for help, and know that all is taken care of…and I can’t believe how lucky I am.
I saw this on Facebook tonight…and couldn’t get it out of my head.
A Mother's Love
This was the caption under the photo:
This is a true story of Mother’s Sacrifice during the Japan Earthquake.
After the Earthquake had subsided, when the rescuers reached the ruins of a young woman’s house, they saw her dead body through the cracks. But her pose was somehow strange that she knelt on her knees like a person was worshiping; her body was leaning forward, and her two hands were supporting by an object. The collapsed house had crashed her back and her head.
With so many difficulties, the leader of the rescuer team put his hand through a narrow gap on the wall to reach the woman’s body. He was hoping that this woman could be still alive. However, the cold and stiff body told him that she had passed away for sure.
He and the rest of the team left this house and were going to search the next collapsed building. For some reasons, the team leader was driven by a compelling force to go back to the ruin house of the dead woman. Again, he knelt down and used his had through the narrow cracks to search the little space under the dead body. Suddenly, he screamed with excitement,” A child! There is a child! “
The whole team worked together; carefully they removed the piles of ruined objects around the dead woman. There was a 3 months old little boy wrapped in a flowery blanket under his mother’s dead body. Obviously, the woman had made an ultimate sacrifice for saving her son. When her house was falling, she used her body to make a cover to protect her son. The little boy was still sleeping peacefully when the team leader picked him up.
The medical doctor came quickly to exam the little boy. After he opened the blanket, he saw a cell phone inside the blanket. There was a text message on the screen. It said,” If you can survive, you must remember that I love you.” This cell phone was passing around from one hand to another. Every body that read the message wept. ” If you can survive, you must remember that I love you.” Such is the mother’s love for her child!!
Why did this strike a chord? Aside from just being a mother? (By the way, snopes clarifies that the picture and the story don’t go together…I’m fine with that, but whether or not the two go together, they both hit my heart.)
Well, to put it simply, I’m somewhat in the same position.
After researching and researching and researching some more…I’ve learned quite a bit about George’s OTC. And if he truly has OTC (which has been pretty well proven through testing and improvement with the diet), then we’re dealing with a disease that does a lot of taking.
For example…in OTC, males are hit harder than females. In fact, 50% of males born with OTC do not live 72 hours. And of the 50% surviving, another 50% will die by the age of 5.
Those are the facts.
So, on Sunday we head back to Rochester. And this time, the questions will be a little more pointed and a little more clear. I need to know exactly what the doctor is thinking, and what we need to do. I’ve read on some new research showing hopeful uses of gene therapy…something we may look into.
Whatever it is, we will do…I will stand over my son and let the roof crash on me, so that some day he can stand tall and read, “If you can survive, you must remember that I love you.”
Wag'n Tales 