Category Archives: Medical mystery

Day 2 – More good news

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I had to make a quick, mid-appointment update to bring some really great news…George no longer needs to have growth-hormone shots!

Now, this may only be temporary, we will have to come back in 4 months and double-check on things, but I’m certain that things will continue to go on the right track. Sadly, our visits with Dr. Lteif (endocrinologist), may become fewer and farther between…but that’s only sad because she’s such an excellent physician, and thinks pretty highly of our little man.

Up next, we see the neurologist, who will become the lead doctor in George’s care. Dr. Renaud is a pretty great doctor, too.

So, as long as everything goes as planned, we’ll be on the road heading north shortly after lunch. And for once, I’m leaving Mayo feeling as if we’ve finally turned a corner, not just headed further into the abyss. What a great feeling that is! (And for those new to my blog, George is suspected to have Ornithine Transcarbamylase Deficiency, a disorder that doesn’t allow him to break down protein…which means he won’t be enjoying full servings of meat, dairy, etc., for most of his life.)

Yesterday, when they drew his blood, I saw on the paperwork that his tests were heading to Baylor for the genetic testing. George hasn’t travelled much in his almost-2 years, but his blood certainly has!

Ag Book of the Day 13:

“What Do I Make? (Let’s Find Out!)” by Dale Simpson. A great board book, with turning wheel, where you can match up the animal with their gift to us! Great for the little guys! Include milk from cows, honey from bees, clothes from sheep, etc. And with the cute cow-shape of the book, and great illustrations, it keeps the little ones interested in the book!

Details

So far, so good

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Last night’s trip here to Rochester was uneventful. We were able to meet up with friends in the Cities and ate at Fogo de Chao’s (a Brazilian all-you-can-eat steakhouse). It was wonderful! But the company was even better. It’s great to meet up with friends and take a moment to relax and enjoy yourself, even if it’s just for an hour or two.

George likes to keep up-to-date on the Royal Wedding details.

Today’s appointment went pretty well. The blood draw part went better than expected. It usually takes several tries and a few different pokers. But this morning was a one-time shot. It was great! (Maybe the extra flesh on his bones has helped?)

Then we were off to see the dietician. She had good news for us, telling us that his ammonia level had dropped by almost half. (Proof that the diet is truly working.) They want to see it below 20 and we hit 18. Yay, George!

Boss Man was a little disappointed. He asked her if George would someday be able to enjoy a hamburger with the family. She burst his bubble when she told him, “Probably not.” He’s holding out hope that maybe a slider wouldn’t count as a full burger, so I’ll let him live with that dream for awhile.

The surprising news? She told us to start watching calories. Yeah, imagine that. We’ve been struggling with putting on weight, fighting for every pound. Now she tells us to back off. That’s just medicine for you, always changing.

His heighth has hit the 41st percentile, but weight is now at a whopping 93rd percentile. From a boy that was born at over the 95th percentile, then dropping off the chart, we’re now where a Wagner boy normally resides…well into the top of the charts! What a blessing!

We travel economically. Make-do cribs! (Just kidding!) 🙂

I’ll let you know how tomorrow goes. It’s snowing now, so we’ll see how our trip home progresses…if the docs don’t change our plans.

Here is Ag Book of the Day 12, a suggested reading by my sister-in-law. I don’t own this book, but it will definitely be added to our farm library!

A Brand Is Forever

“A Brand is Forever” by Ann Herbert Scott. It’s about a young girl who has a pet heifer, and she’s nervous about branding hurting her pet. The book explains why we brand, and walks through the process. What a great book for those that are familiar with branding, as well as someone who is questioning why we brand! (I think this would work for the parents, as well as the child!)

I’d love to hear any other suggestions! And thank you, for all the thoughts, prayers and support. It’s been a long ride, but we’re keeping our heads above water!

Roadtrip

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We are on the road again. We will be in Rochester sometime this evening, for doctor appointments the next few days. I know George isn’t a big fan of the trips, so it’ll be interesting.

I’m still going to try to blog every day. Had I been far enough ahead with all of this, I would have had my blogs ready to roll before we left, but that’s never worked out so well for me! If I plan far enough in advance, something always falls through. Oh well, our lives are exciting to say the least!

Spring has decided to play games with us, and winter has once again reared its ugly head. It’s snowing now again, as we speak. Yuck. I’m ready for sunshine and green grass, but maybe that will be here when we get back? One can always hope.

Here’s a few pics of EJ being helpful and shoveling our sidewalk. Love his enthusiasm!

Not what you want to see in April!

 

EJ love the "shubel" that Grandma B. gave him for Christmas! Maybe next year we will get him a snowblower.

Here it is, Ag Book of the Day 10:

“Little Star…Raising Our First Calf” by Twins Rianna and Sheridan Chaney. It’s a great story about twin girls and their experiences on the farm. I love how they define words in children’s terms at the back of the book. For example, “Manure – A fancy name for cow poop.” The pictures are great, and my kids love to see other kids involved in agriculture. Kindred souls, I guess.

Little Star... Raising Our First Calf First in a new children's agricultural book series. Rianna and Sheridan Chaney hope their experiences on the farm will help children understand the importance of farm animals and inspire them to appreciate all of God's creatures

Silver linings

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If you’re friends with me on facebook, then you’ve probably realized that I’m kinda into finding the silver lining in every situation. I think it’s a mental-survival thing. Without it, I would be completely whack-o a few times over. (Be careful…I know what you’re thinking!)

But today’s silver lining showed up a few times! Yay!

First: George ran his first fever last night since we had The Plan in place. It was a bit scary, but things went well. I called the pediatrician, he ran through things with me, we formulated our plan and all went well. I ended up not having to take him in, the temp stayed down over night, took him in this morning and all things are well. Woohoo! Chalk one to George!

To celebrate, we got his FIRST big-boy haircut! Not bad, for a boy that’s about to be 2!

Not only will George be 2 in a month, but he got his first real hair cut today!

Second: Someone asked if the deer are still a problem. Here’s the answer:

That isn't just dirt on the horizon. Those are hundreds of deer, still making our yard home.

Yep.

But the silver lining? Another creature has followed them here…namely Bald Eagles. It is COOL! There are at least four of them right now. I think they’re eating off the carcasses. But they are so majestic and all things amazing. I tear up looking at them, and feel like saluting as they fly by…kinda weird, I know.

Getting close to a Bald Eagle isn't as easy as getting pics of deer in our yard.

And just to let you SEE what kind of damage the deer are doing, I’ve got these pics for you:

Yeah, that's what you think it is...deer urine

You can see where the hay has been moved from. Notice the difference between white and yellow/brown.

Notice the yellow/brown snow? Do you remember what your mother said about eating yellow snow? That’s right, that’s urine. As in deer urine. As in lots and lots and lots of deer urine. Now imagine all that on your breakfast, lunch and dinner. Yum.

But SB 2227, which will give landowners a few more options in deer depredation, is supposed to be voted on in the House of Representatives tomorrow. We’ll see how it goes. I’ll keep you posted.

And come next fall, I expect you and ALL of your family to come hunting.

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.

The storm within

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After a week or so of really great weather, Mother Nature decided to remind us once again that she is definitely in charge. I’m sitting at my computer at 11 p.m., already knowing that school has been delayed by two hours tomorrow morning.

What does the bad weather mean to someone calving? Well, it means no sleep.

Since we are in a full-scale blizzard, Mark and I are checking the cows every hour. So, I’ve been taking the first few hours of checks. And, to tell you the truth, I’m exhausted. Going out and checking cows is tiring. Doing so every two hours is tiring. Doing it every hour…well, you can about imagine.

The worst part isn’t going out and checking. The worst part is knowing that you’re nice and toasty warm inside. Then bundling up in multiple layers, getting nice and warm and sweaty while doing so. Then, once everything is on (my attire: two pairs of pants, double socks, two sweatshirts, heavy jacket, gloves, hat, hood, scarf, Muck boots), grabbing the spotlight and heading out behind the house.

Our lot that we have the cows that are calving in is behind the house, at the bottom of the hill, which is great when going out. Unless it’s icy. Then, after walking through snow (sometimes knee-deep or more) and checking out 80-some cow-butts (Boss Man says that a cow just “looks off,” but I need to see physical proof that something is going on, like a balloon-looking bag of blood and water hanging out her rear, or toes sticking out, or a calf laying on the ground next to her!), I tredge back up the hill to the house.

It’s while out there, in -10 or colder weather, with the snowing freezing my eyelashes to my scarf, checking out some beautiful bovine behinds, that my mind starts to wander. And I’ve been hit lately with a storm inside me, which is part of the reason why my blog has been quiet.

With George’s potential diagnosis, and all that it entails, I’ve been contemplating the future…and fighting the battles within. I know that worrying doesn’t help any, but guess what, I’m a mom…how can I not? And I think it would be pretty ignorant of me to not be prepared for things to be rough at times. I know they will be.

I know that we’ll have hospitalizations. I know that I’ll have to deal with physicians that don’t have a clue as to what I’m talking about, and may not even take me seriously. I know that I’ll even have family that won’t understand what I’m going through, or where I’m coming from.

And then there will be the school system. The insurance company. The state. The pharmacies.

But for tonight, there’s a storm brewing outside…and that out-trumps the one in.

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.

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.

Preparations

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We head to Mayo tomorrow. It’s hopefully time to finally get to some answers. Poor kid has been through the ringer, and all before he turns 2. I’d complain about the fairness of it all, but we all know that fairness doesn’t play into these things.

Anyway, while all this is going on, we’re still at the mercy of winter, still have cattle to care for and still have chores that need to be done. Which means we start planning now, preparing for the worst, hoping for the best, making sure that everything is in place, so that if (I should say when) it snows while we’re gone, it’s not a lot of extra work for whomever is helping us out.

So Boss Man is off, getting things ready. I’m packing bags for all of us, arranging staying places for the other three kids, arranging back ups, in case someone is sick, and the back ups for the back ups, just because we roll that way! Planning out time of departure, time of arrival, places to stay in Rochester, what mode of transportation to take, etc., etc. Like planning a great vacation, minus the fun and vacation!

And just when I thought I had it all planned out, up pops another problem. Our deer situation has gone from kinda crazy, to absolutely unbelievable. It’s hard to even imagine saddling someone else with this issue while we’re gone, so we’re trying to do what we can to help the situation out.

Here’s my latest shots, without any voiceover. I think it speaks for itself:

I’ve contacted the proper authorities (probably even a few that could care less), shot footage and sent e-mails. I’m not sure what will happen from here on out, but I know we’re working on it.

I will try to keep everyone posted on how things are going. And we’ll hopefully be home before we know it. I’m also wishing that maybe we’ll be a few hundred deer shorter than where we are now!

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.