Category Archives: About me

The doctor is in

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It has been a little over a month since we were finally clued in to what was going on with George. It’s been a few weeks of trying to find our groove, feeling our way along and doing lots, and lots, and lots of research.

What I found hasn’t been all that encouraging, but if you are prepared for the worst, than anything above that is excellent…right? And either way, having some idea as to what is going on is WAY better than fighting some unknown. Trust me on that one.

I have spent countless hours on the phone, trying to figure out the logistics of George’s “medical food” (which has been an absolute nightmare), arranging for our emergency care plan (hopefully it will get old and dusty and never need to be used!),  and educating quite a few medical personnel on a rare condition called ornithine transcarbamylase deficiency. (If I had a nickel for every time I was asked to spell that this week…)

But, with the bad comes the good. George has had a GREAT week…and we’ve added another word to his vocabulary!  He now says, “More,” while signing it. It’s GREAT!

Because I’ve been asked a lot about it, I’m going to give you a quick run-down on OTC. Here are the facts:

  • OTC is a rare metabolic disorder, usually genetically inherited through the mother
  • OTC affects the body’s ability to get rid of ammonia, which is a by-product of breaking down protein. Since the body can’t get rid of the ammonia, the levels increase in the blood, causing the most damage to the brain.
  • High-stress episodes can cause the ammonia level to spike, things that we need to watch for, and seek immediate treatment for, are: fever of 101 or higher, vomitting, lethargy, hyperactivity, etc.
  • Treatment includes immediate IV fluids during episodes to lower the ammonia levels, low-protein diet, and sometimes medications. (The low-protein diet will be life-long. Although, as he grows, we should be able to add in more protein. Right now we are at only 9-10 grams of protein per day. The “medical food” provides the rest of the essential amino acids that are needed to grow and sustain life.)
  • The only “cure” is a liver transplant, which is a drastic step, to say the least.

If we follow the diet, make sure George takes his supplement, and are very diligent during times of illness, George should have a very normal life, sans meat. So that’s what we’ll do. (You can read more here.)

I will admit, though, that this week has not been easy for me. I’ve been in a bit of a dark place these last few days. The weather, lack of sleep, lack of interaction with others, fear, anxiety, anger…you name it, it’s hit me. But I promise this week will be better.

It’s up to me to make it so.

Adjustment of a lifetime

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So, I’ve spent a few weeks making a major adjustment. And I mean major. Now that George is under a low-protein diet, life has become interesting.

Some of the adjustments that have been made: no more cereal and milk in the morning, no more bacon and eggs, no more cheese, no more ice cream treats, no more sleep. Just kidding on the last one.

Actually, this diet has been a bugger. I have been letting him sleep in, so that the other boys have breakfast before he wakes up. Then we start with fruits, veggies, applesauce, all in unlimited quantities (unless the veggies happen to have some protein in it). The funny thing is, that I don’t think George ever feels full anymore. And I kinda get why.

I mean, what’s more satisfying than a piece of toast, or a serving of pasta, or a nice, juicy hamburger? All which are now off-limits (at least in any significant quantity).

Now, to clarify, this isn’t just a diet that I can decide that it’s not worth the effort and let him slide on. We are very, very fortunate that we’ve caught it this early on, and any damage done he should be able to recover from. In fact, I’ve already noticed a change in energy, balance and we’ve added two new words consistently: “Hi!” and…”MOM!!!” WOOHOO! Talk about a sweet sounding word! Of course, his favorite is still “Dad,” but at not-quite-2 I can’t fault his taste.

When we returned from our last conference serving on the American Farm Bureau Young Farmers and Ranchers committee, there were a few letters waiting for me. One gave us the tentative diagnosis (we’ll be completing the genetic testing in April) of Ornithine Transcarbamylase deficiency (OTC). The other was our “free pass” at the ER.

You see, OTC apparently isn’t something you can mess with. Through all the mysteries of what is happening inside of George, when he’s not breaking down the protein and things start to build up, ammonia levels in his blood can start to climb…and that’s not good.

So now, I carry a letter that states that if we happen to be in the ER, George must receive immediate attention, starting an IV drip of [insert lots of medical numbers and stuff here] immediately, removing him from all protein, and THEN wait for the blood work to come back.

What does this all mean?

If George gets a fever, vomits, seems more tired than normal, it becomes an emergency. An easy to fix emergency, but an emergency none-the-less. They like to drive that point home by having you read all sorts of scary stuff.

Thankfully, we’ve been blessed with a pediatrician that seems to be really willing to work with Mayo and become very active in George’s care. The big question has become, “Do we live close enough to a medical facility?” Ugh. That’s a tough one. We’re still working on the answer.

But, for now, we have a plan, we have a direction and we have some pretty quick results already. That’s enough for me…at least for today.

I’ll worry about sleeping tomorrow. 😉

Oh, and did I mention that we’ve started calving? May the fun begin! Stay tuned for pics.

New perspective

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We are entering a new ballgame here at the Wagner Farm. One I never expected to have to face, but can’t wait to see the results!

Our youngest son seems to have a condition that doesn’t allow him to breakdown proteins. The solution to this problem, at this time, is to limit his protein intake. Quite an interesting situation for a cattle family, to say the least. But, in the true sense of making lemonade out of lemons, I look forward to the road we’re going down. I can’t wait to see what I can learn!

Don’t get me wrong, my family will not become vegans, and I have no intention of changing our way of life, but everything will be done from a whole new perspective.

Now, I have always been one to understand that there are people in this world who make choices based on true science, medical advice and thorough research. I respect and admire those people and understand completely why they make the choices that they make.

On the other hand, there is an even larger group of people that prey on fear, sling mud and use emotion and distorted information to support their cause, and feel free to spread their misinformation around the cyberworld. Those are the people that I hope to refute.

We raise cattle…and we do a good job, if I do say so myself. We also raise corn, soybeans, wheat and alfalfa/grass hay. (And for the moment, we appear to be raising a pretty darn good crop of deer…much to our dismay.) Having a child that cannot consume these products, or at least only in extremely limited quantities, changes my perspective quite a bit…and that’s a good thing.

I find no fault with someone who makes a decision to elminate a product that I raise out of their diet for the benefit and well-being of their health, or in this case, a child’s health. When that decision is made based on the argument that I’m not caring enough for my animals…that’s where we part ways.

Care to join me on this new adventure? It’s gonna be a wild ride!

Ray of hope

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We had another appointment at Mayo yesterday. For the first time ever, I feel as if we left with a clear vision…a plan, if you may.

In December, George went through a test that checked the level of orotic acid in his urine. Apparently this acid level becomes high when you are unable to break down proteins. Having a high level of orotic acid can also lead to having a high level of ammonia in your blood. High levels of ammonia can cause a host of other problems that George does not need to deal with, and will more than likely lead to IV’s and hospitalizations.

So, the only way to keep his orotic acid level lower is to limit his intake of protein. Yep, that’s right, George can’t eat meat.

Well, I shouldn’t say “can’t.” He can eat SOME protein, just not much. We are limited to 9 or 10 grams of protein per day. And let me tell you, that’s not much.

For example, one cup of 1% milk contains 8 grams of protein, 1/4 cup mozzarella cheese contains 7 grams protein, a slice of bread contains between 2 and 5 grams of protein, a 4 oz. hamburger patty contains roughly 28 grams of protein, a large egg contains 6 grams protein. Check your labels, you’ll be amazed at what has protein in it.

As difficult as it will be for me to switch up my cooking and meal preparation, the great news is that by changing his diet, George will feel better, should catch up developmentally and hopefully no permanent damage has been done.

See, if we hadn’t been persistent in making sure they were checking out the possibilities, there’s a really great chance that this could have been missed. In fact, the first time they suggested testing his orotic acid, the doctor specifically said that she didn’t suspect anything would show up. Then, when it did, she figured the test was a fluke and that the second test wouldn’t be high. And then, when THAT one was, she suggested that we run the allipurinol test, but didn’t know if we needed to rush on it. Since we were already at Mayo, I encouraged her to go through with the scheduling. That was December, and here we are now.

Now, sometimes they don’t catch these deficienicies until there are very significant delays. And for the most part, George doesn’t have any significant delays…at least none that would normally raise any flags. But the fact that we are able to get ahead of this and hopefully prevent anything catastrophic from happening…well, that’s big.

So now, we sit and wait and see how it goes. We should be getting a shipment of his “medical food” sometime this morning. (Since milk is pretty well out of the question, we’ll now be on a special formula to replace it. It’s amazing the stuff they have out there!)

We head back to Mayo in April to recheck everything and see where we’re at, but I’m confident that we’ll have some big things to share. And I can’t wait!

Now, don’t get me wrong, the irony of a cattle producer’s son who can’t eat meat isn’t lost on me. But when you’re a parent, you quickly learn that you will do whatever is best for your child…no matter what.

And I wouldn’t have it any other way.

Every parent’s nightmare

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I apologize for a few days of silence…again. But, as a parent of small children, I just go where life takes me. This week, it took me to a place I never care to go again.

I’m going to replay my Tuesday, Jan. 18, 2011…more for a written memory for George, than anything. That way, when he’s a teenager and I’m wondering why I’m completely gray, I can look back at this blog and pinpoint the exact date each gray hair appeared. On Tuesday, approximately 57 of them popped in…actually, it was probably Wednesday.

Tuesday started out as a regular day. The weather was kind of bad, and the roads weren’t in the best of shape, so Mark ended up taking the boys into town to meet the bus. (Yep, in the tractor, isn’t Midwest life grand???)

George was to have the child-development/speech therapist come do her weekly visit that morning, but with the roads the way they were, we decided to push it back until after lunch. When she got here, we played a bit, but George wasn’t himself. After about 45 minutes, we talked about his upcoming Mayo trip and our plans for the future.

After she left, I planned on giving the boys a snack, then laying George down for a nap. Well, he dozed off while eating his snack, so I let him rest in his highchair for about 45 minutes. Thanks to EJ, he woke up with a start, but seemed a little better and wanted to play a bit. About an hour later, he was standing in the kitchen, when all of a sudden he just dropped to the floor. He cut open his lip and cried a bit, but I put a cold wash cloth on it and thought I would just keep a closer eye on him.

(One of our on-going issues has been his lack of balance at times. He has a tendency to run into things and bruise himself, but this was the first time that he just flat-out dropped.)

About 4 p.m., George seemed really cranky again, and very out-of-sorts, so once the boys got off the bus, I laid him on the couch to watch a cartoon for a bit. I thought he would rest a few minutes, and then be in a better mood. He dozed off, so I went to the dining room table to fold laundry. At about 5:30, I heard a noise that made the hair on the back of my neck stand up. I will never forget it as long as I live.

I ran into the next room and saw him lying on the couch, completely blue, stiff as a board, foam coming out of his mouth, eyes staring blankly into space. I grabbed him and ran into the bathroom, grabbing the phone on my way, dialing 911.

Now, before you think I jumped the gun, let me tell you that I am familiar with seizures. Big Bro has epilepsy and takes medicine for it. He had grand mal seizures from the age of 6 months until he turned 2 1/2. He would have seizures out of the blue, without rhyme nor reason, and they would sometimes last 3 or more minutes. But it wasn’t like this. Something told me that we needed help.

As I was talking to the dispatcher, I swept his mouth, making sure that he hadn’t accidentally swallowed something, or wasn’t choking, etc. As I was talking to her, (about 5 minutes had past) he seized again, this time more violently, and lasting longer. (Although, still probably only 2 minutes, but at this point, time seems irrelevant.)

It dawned on me that Mark didn’t know what was going on, and although he was feeding cows, he would probably be somewhat alarmed to be notified of the ambulance showing up by watching it come down the driveway. So I went into the kitchen, dialed his number on my cell phone and had Big Bro tell him that he needed to get to the house NOW, because the ambulance was coming for George.

Now, at this point in time, I’m beginning to come apart a little bit. I was doing my best to keep things together, but I had a feeling in my gut that things weren’t good. I had been finishing up supper, I had three boys that I was trying to keep calm and in the other room, and I had a little one that needed some serious intervention.

That’s when I noticed that he was starting to feel very, very warm. Mark finally got into the house, and since he had just come from outside, I handed him George, thinking that it would help cool him off. I grabbed the thermometer and took his temp, 103.8. At that point, we decided to lay him on the washing machine in the entry way, since it was the coolest room in the house. George was making noise, and moving his head somewhat, but his arms and legs were still very stiff.

When the ambulance arrived, the staff checked him over and assessed him the best they could. It was a consensus that he probably had a febrile seizure, but that I should call his pediatrician first, before they left, to make sure that he was OK with us keeping him home.

He wasn’t.

With George’s history, nothing is ever as easy as it seems, including seemingly innocent febrile seizures. (Which, by the way, aren’t all that uncommon, but still scare the beejeezus out of any parent.) So George and I headed to the hospital.

On the way down, George’s O2 sats would drop to the high-80’s, prompting him to get a nice blow-by of oxygen. (The friendly EMT is actually a old family friend, and he made a comment about meeting our deductible early this year, to which I replied, “We met our deductible about 10 miles back.”)

When we arrived in the triage unit, the doc met us immediately and ordered blood work, chest x-ray and then some tylenol to bring down the temp. At this point, it was already down to 102.9, but we tried the tylenol, which promptly came back up, and all over everything. (Note to self, next time just do the suppository first.)

The strep fast-test came back positive, prompting a night’s stay for observation and some antibiotics (at first prescribed orally, until I reminded them about the whole tylenol fiasco). I remember the ER physician remarking that we would be home in the morning, “unless something else happens, then you may have to have a spinal tap done, but don’t worry, it won’t.” I hate it when doctors say that.

We were checked into our room, met a wonderful nurse named Sarah, and proceeded to get ready for the night. (It was about 11:30 now.) Just as she came into the room to give another dose of tylenol, she checked his temp (100.9) and he began to seize again. Things moved pretty fast then. Two more nurses were promptly in the room with the push of one of those scary buttons, oxygen was administered, as well as suction prepared in case it was needed.

In all, the third seizure lasted less than 30 seconds, but it was enough to make me realize that we weren’t just dealing with a fever. 100.9 is barely considered a fever, let alone something that should make someone break their seizure-threshold. (Something I learned when dealing with Big Bro’s epilepsy: Everyone has a seizure-threshold. Most people have very high thresholds…meaning that it takes quite a bit to induce a seizure. People with epilepsy have lower thresholds…meaning that little things can cause the same reaction.)

After things settled down, the pediatrician was called. The ER doc was right…at 12:30 Wednesday morning George had a CT scan, followed by a spinal tap at 2 a.m. It was decided that we would begin treatment for meningitis immediately. According to pediatrician, meningitis is one of those diseases that if suspected, you treat for it while waiting for test results. We would be in the hospital for 48 hours minimum.

Well, long story short, we were released Thursday evening. All blood tests came back negative and the spinal tap came back all-clear. It was decided that George’s seizures are related to his complicated neurological/pituitary/growth hormone/something-or-another whatever they’re calling it now. We’ll head back to Mayo on Tuesday and see where we go from here.

He’s been treated with enough antibiotics to kill off any unsuspecting bug in his system…with which I’ve tried to come back with yogurt, to help out his poor guts and bottom. And so far, we’re doing good.

I probably didn’t need to call the ambulance…but it wasn’t a risk I was willing to take. I’m sure most parents understand where I’m coming from on that note.

I’m now a little leery about putting him to bed. I watch him carefully during naps. I check his temp frequently. I’m sleep-deprived and struggling to keep up…but someday I will look back on these days, not all that fondly, and just be glad that we made it through.

I was talking things over with my sister-in-law, and she’s right, we are blessed. Yes, George seems to have some problems that they can’t figure out, but so far, you wouldn’t be able to tell by looking at him. We’re very lucky. It could be so much worse.

Little brother (George), looking up to his big brother, wanting to farm, just like him.

And for that, I thank God for all that we have been given…we’ll take tomorrow as it comes.

Winter playing

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This is what our kids did before illness struck on Christmas Eve. Boy did they have fun!

We’ll be working on getting the cows closer to home later today, so I’ll share a video of that when I get a chance. I can’t believe that we sell calves on Monday and that calving season is just a little over a month away! Wow! Has the year flown by!

The season of sharing

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Unfortunately, we were a very sharing household this Christmas season, but not just with good tidings and presents. We shared a really, really nasty stomach bug.

Well, the week went like this:

Monday – snow storm that ended up with school being called off early and the elementary Christmas concert being cancelled.

Tuesday – life resumes to normal, although, without our knowledge, my 70-year-old dad decided to help work a couple-hundred head of cows.

Wednesday – woken up by a phone call from my Mom saying that Dad was taken by ambulance to Aberdeen. He appears to have had a heart attack. The boys’ Christmas program was rescheduled for Wednesday morning, so I go to the program, then to Aberdeen afterward.

They put Dad in ICU, run tests, perform an angiogram and find that miraculously, his by-passes from 11 years ago are still open. His legs are completely blocked, meaning that if he doesn’t quit smoking, he will more than likely lose one, if not both, legs.

After midnight, Wednesday/Thursday early morning – Scooter is having a sleepover at Grandma’s with some of the cousins, he throws up during the night, but they write it off as having too many sweets at school that day.

Thursday – Everyone is playing well, Dad decides that he’s coming home, whether the doctor wants him to or not. It is confirmed that he did have a mild heart attack, and his blood pressure is giving him some trouble, which is a new problem for him. He tells doc, “I have 14 grandkids waiting for me at my house. I’ll be better there than here.”

Friday – I head to town early, run to Aberdeen with my sister for some last minute gifts. Come back and get ready to church, to find that Big Bro has become ill. He stays home from church. We have a great Christmas Eve service, come back to my Mom and Dad’s, where another grandchild becomes ill. We’re starting to notice a pattern.

In total, three grandkids become ill on Christmas Eve, but we didn’t cancel the festivities, because they had already exposed everyone, so what was the point? We did find that only having one bathroom was a bit of an issue, but it worked out.

On Saturday, everyone was feeling a bit better. No one new became ill. Some of the family traveled home and we had a great meal together.

On Sunday, I became ill. Yuck.

The only thing that I have had since noon yesterday is a half a glass of juice this morning. The good news is that I won’t have to worry about putting on that dreaded holiday weight. The bad news is that I won’t be able to look at turkey again for a long, long time. Yuck.

Oh well, it seems to be an appropriate end to a crazy year. Here’s to starting 2011 on a better, and lighter, foot!

The season of giving

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We are sitting here in Rochester, xrays yesterday, an appointment or two this morning, more this afternoon. While watching a commercial in our hotel room (Boss Man and George were both snoozing), a thought crossed my mind.

It wasn’t just a thought, though, it’s become an obsession of mine…and I’m wondering what it would take to put it into action.

I was watching a re-run of Extreme Makeover: Home Edition on CMT when a commercial came on. It showed a poor kitty with a cast and a forlorn looking puppy, claiming to need your money to have a happy Christmas. And it bugged me.

Now, don’t get me wrong, I fully understand the need for shelters and places that will take care of animals that have nowhere else to go. I fully support each and every person donating time and supplies and funds to local shelters, where they can see their money doing good work.

My issue is with organizations, such as HSUS, who spend a majority of their money on other things, such as lobbying, rather than actual care of animals.

Why is it bugging me?

Here I am, sitting in one of the highest regarded care-centers in the world. I’m trusting them with my 19-month-old son’s future, and the physician (who is respected in her field of practice across the world) looks me in the eye and says, “Your son, he puzzles me. I have no answers.”

And I wonder to myself, how could the funds that HSUS is wasting on high-rises and pension plans change that answer?

I watched the Extreme Makeover: Home Edition episode. It was about a child with cancer, who makes bracelets to help raise funds for cancer research.

Here, in the middle of the episode, runs a commercial to “help” animals by donating money every month to an organization that does very little to help any true hands-on facility. They want you to look at these poor kitties and poor puppies and feel guilty for spending a holiday warm and comfy, when they don’t have such luxuries. But all it did was make me mad.

Here, during a show that told the story of children that may not see Christmas, that may have to spend their holiday in the confines of a hospital room, they want you to send money to lobbyists? Gives you the warm fuzzies, eh?

We continue our appointments this afternoon, with the next on the list being a neurologist. I don’t know where we will go from here, but I’m almost certain that we will be fortunate enough to leave here in the next day or so. We may not have answers, but we will be home and we will be together for the holiday.

If you must give money to animals, and wish to do so every month, please, consider your local animal shelter. At least you’ll know where your money is going.

And if you feel even more giving, perhaps donate your funds to medical research. Some families are not going to be as lucky as we are. But if enough money is donated, maybe there will be fewer I-don’t-knows and more here’s-our-plans.

That’s my Christmas wish.

Different kind of thanks…

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My second “thankful” post will give you a list of ten things that I am glad that my boys have taught me. Some more so than others, LOL!

1) Good things come in small packages. So, so true. I cherish every moment that I was able to spend rocking my sons, holding them close, knowing that they relied on me for everything. It was overwhelming at times to think about, but I never regretted a single second of it.

I so miss these days! *snuggles*

2) When something’s out of reach, keep climbing. Now, for the most part, this wasn’t a lesson that I enjoyed them learning. Mostly because it involved things like trying to hide candy on top of the refrigerator unsuccessfully…and finding out I was unsuccessful by catching a 2-year-old on top of the fridge, eating candy.

3) What doesn’t kill you, makes you stronger. Well, if not, it at least teaches you some pretty valuable lessons. For instance, eating a wart off your foot doesn’t need a trip to the ER, even if you had wart remover on it. Although, the Ask-A-Nurse line and Poison Control Center will try their best not to gag and/or laugh at you for explaining, and re-explaining, and then explaining once more to whomever they can get near-by to listen in and give a “second opinion” on the situation. Scooter truly does have a stomach of steel, I swear.

4) Doctors don’t know everything. Yeah, I knew this before, but there’s something about the top medical clinic in the world telling you, “Hey, there’s something wrong with your son, but we haven’t a clue as to what it really is,” that makes you sit up and take notice. But I’ve quickly learned that the one True Physician knows all and can perform miracles when least expected. I truly thank God each and every day.

5) Life with boys is never-ending excitement. Well, let’s just say that the scenery is never the same, and the stuff they pull is ALWAYS amazing me. Really? Why would I ever think that a 2-year-old would hide in a dryer? Why would a 3-year-old fill the washing machine with milk replacer? In fact, life is so hectic at times, I’m adding 6) Life is never a dull moment.

Things like buckets of toads, being dropped on my floor.

7) Love for a child is immeasurable. There is nothing…I repeat, n o t h i n g, that I would not do to save my sons from pain or being hurt. I never understood what people were talking about until the day that I found out that we were expecting Big Bro.

8) Laugh. Every day if you can. Where would we be without enjoying the little things? I shudder to think.

Plus, you can take embarrassing pics of your kids before they're old enough to tell you no!

9) Sometimes the words “Thank You,” mean more than words can describe. When Big Bro told me “thank you” this week, for being a great mom, I will relive those moments for years to come. And so to you, my readers, I say “Thank you.” Thank you for following my crazy life, coming onto our farm, learning about our family and our industry, and being willing to share it with others. I do all of this to ensure that my sons have the same types of opportunities that my husband and I were blessed to have, but without you, I am nothing but a voice in a void. Thank you.

10) Tomorrow will not be today. I do not know what it will bring, but I know that it won’t be the same as today. And that’s OK. It has to be, because if I’m not OK with that, it doesn’t matter, it’ll happen anyway!

Ah, this life with boys is a crazy one, but I wouldn’t change a minute of it…well…

Slow on the draw

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Sorry about the slowness in my posting, but I’ve had a busy few weeks. But I’m working on a doozy of a blog post now, so hold on to your hats!

Life is going grand, and harvest has wrapped up, I was able to shoot my deer, the cows have been moved closer to home and Thanksgiving is just around the corner. Where in the world did 2010 go??? I can’t be the only one who feels like the year has escaped, with hardly a ripple?

And here it is, nearing the end of November, and we still have no snow on the ground. This fall has been amazing! 🙂