Tinsel and incense

The kings are wandering. They have not made it to Bethlehem. In my house, they are still in the wrong room, roaming past the Purel and around the Christmas children's books. Mary and Joseph made it today.  They are looking ever so tired.  The kind animals have moved out of the barn, since our set really isn't big enough to house both the Holy Family and the animals.  They are huddled around the Noel candle. There are cookie crumbs everywhere, so any resident mice can have their fill before tonight's required hush.

Hush.

I love the magic of Christmas. I love the blend of deep and rich theology against the starry, sparkly merriment. Christmas celebration echoes its theology elegantly.

This is the night when our Lord humbled himself. God as man. He didn't don a baby costume and pretend. He didn't set His divinity aside for a few years. Fully human. Fully God.

I cannot comprehend it, but I can smile at it.

Today my sister came to visit bringing her daughter. We made cookies.  While they were in the oven, we turned on Christmas music. The Children laughed and played and danced and twirled! The smell, the mess, the laughter, the light, the decorations- That is Christmas!

In sweet, joyful, human chaos, we celebrate and welcome our Lord. We sing with the angels, because He came. All our imperfect celebrations are for him. A holiday so wonderful that we share it with everyone. The green and red decorations and the blinking holiday lights, the reindeer and elves and snowmen, the trees decorated- in each house uniquely representative of the family- it all serves as a joyful but decidedly human backdrop to celebrate the birth this divine child.

Still through the cloven skies they come
With peaceful wings unfurled
And still their heavenly music floats
O'er all the weary world;
Above its sad and lowly plains
They bend on hovering wing.
And ever o'er its Babel sounds
The blessed angels sing.

But God... He did it first!

Every time the issue of torture comes up it is only a matter of time before someone brings up some awful thing terrorists are doing somewhere.  "Why aren't you upset about that?"

I am glad you asked.  I am upset. Terrorists terrorizing is, well, terrible.  Often so terrible it is disturbing. It is hard to imagine people being so utterly inhumane.  For awhile, I had to stay off Facebook because the gruesome images of violence were consuming my feed, a form of graphic violence. (I disapprove. But that is a post for another day.) There is extraordinary violence committed against innocents.

Sometimes in war there is not a clear cut bad guy and good guy. People fight for all kinds of reasons.  In this story, there is a bad guy. The terrorists are the bad guys. Right? We oppose them.  They hate. They embrace evil. They will use any method to achieve their end. Killing children? Rape? Nothing is beneath them. That is what a bad guy is.  A terrorist is a bad guy pretty much by definition.

That makes us the good guys, if only we were four year olds on a playground.

In real life, the presence of a bad guy and a guy opposing a bad guy might not indicate the presence of a good guy.  Opposing him does not make us good.  Good is harder.

So, lets talk about being the good guy. Here are a few of the things the "good guy" is saying.

How can you complain about splashing a little water? 

If you are still trivializing what happened I encourage you to read. I cannot argue with ignorance. I do not want to go into specifics about what we did, but there are a thousand places you can read descriptions in graphic detail. This is not one of them.

The report is partisan.

If you think the report shouldn't have been done and was only done as a partisan power play, set aside the question for long enough to decide whether or not the report is true. To my knowledge, no one is seriously arguing its veracity. If it is a partisan power grab, the way to diffuse that would be universal repudiation. Don't corner yourself. Don't dodge the question of fact. Truth does not belong to either party.

But, what constitutes torture?

If you are quibbling about the line between not very nice and torture, your questions are understandable, but wrong. When you are talk to teens about sex, they inevitably ask how far they can go. It is an obvious question that you cannot answer directly.  It is easy to find examples to frame the question, but then there is an enormous gray area. Wandering around blindly in that gray area, aiming for just this side of mortal sin is probably not wise. You cannot answer the question because what they are really saying is, "I really, really want to commit a mortal sin. How close to that can I get without being separating myself from God?" The question itself will lead you in exactly the wrong direction.

To be clear, I am comfortable asserting that what we did was well outside of the gray area.  It was torture.

Move ahead. We accept that what we did was torture.  Why did we do it? Was it justified? This is not loose moralizing from a borderline pacifist.  These are pragmatic questions because it will come up again.  Can we do it again?  Can it be justified? 

Don't you know what they are doing?

Why did we torture?  Because they are bad guys! How do we know? They hate. They embrace evil. They will use any method to achieve their end.  We had to stop them.  We had to find out what other violence was planned! We had to know! We would use any method to stop them!

 This is an old argument. When do the ends justify the means? Usefully, it has been answered explicitly for Catholics.

"It is therefore an error to judge the morality of human acts by considering only the intention that inspires them or the circumstances (environment, social pressure, duress or emergency, etc.) which supply their context. There are acts which, in and of themselves, independently of circumstances and intentions, are always gravely illicit by reason of their object; such as blasphemy and perjury, murder and adultery. One may not do evil so that good may result from it." CCC, 1756

Even if we are responding to gruesome violence we cannot resort to intrinsically evil acts.  When we face judgement and are called to account for what we have done, we cannot point and whine and say, "But Go-od... He did it firrrst."

Isn't it covered by just war theory?

No. Just war doctrine is limited, though theories abound.  Again, looking to the Catechism:

2309 The strict conditions for legitimate defense by military force require rigorous consideration. The gravity of such a decision makes it subject to rigorous conditions of moral legitimacy. At one and the same time:
- the damage inflicted by the aggressor on the nation or community of nations must be lasting, grave, and certain;
- all other means of putting an end to it must have been shown to be impractical or ineffective;
- there must be serious prospects of success;
- the use of arms must not produce evils and disorders graver than the evil to be eliminated. The power of modern means of destruction weighs very heavily in evaluating this condition.

That sound like we have to weigh our actions against theirs.  We do. But it goes on:

 2312 The Church and human reason both assert the permanent validity of the moral law during armed conflict. "The mere fact that war has regrettably broken out does not mean that everything becomes licit between the warring parties."
2313 Non-combatants, wounded soldiers, and prisoners must be respected and treated humanely.

It cannot be justified.  That is what intrinsically evil means. War is evil, but not intrinsically because it can be justified under certain very limited circumstances. Abortion is intrinsically evil. Torture is intrinsically evil.  



OK. So, maybe what we did was bad. But why are you more upset about our response than the crimes we were addressing?

What are we doing? We are becoming the bad guy! When we decide we hate our enemy and there is no action off limits to stop him, we are indistinguishable from him. We set his actions as a standard. See that line, that line they keep moving? We are running full speed toward it.

The good guy doesn't aim for the worst thing he can imagine and try to stop just short of it. He aims for the good. Even when he misses, he is justified.  If we become the bad guy, it doesn't matter anymore if we win or lose.

I am angry- livid- because these are evils done in my name. Why am I more upset about what we are doing than what they are doing? Why am I more concerned about being a sinner than stopping a sinner?  Because I am more afraid of Hell than death. 

Merry X-mas

Every night when my husband comes home, he has to gets to listen to me rant about discuss something or other. Last night it was x-mas. Or Christmas. Or outrageous outrage.

"See," he said, "That was a blog post.  You should write this stuff."  I promised him that I would try to take out today's frustrations on the internet.

Scrolling on Facebook, you might get the impression that we live under the kind of oppression our forefathers escaped. I was tempted to respond to each and every malcontent: x-mas is not an assault on Christmas.

The confusion is obvious. We use the English letter 'x' to cross things out, so a holiday celebrating 'x' sounds delightfully, modern nihilist.  X-mas is a celebration of tinsel and Santa and magic and everything but Jesus.  Cross him out.  Get your battle gear on!  Suit up!  America hates Christians!

Except that it isn't true.

X is a symbol. It is the Greek letter, Chi, which is the first letter in Khristos, or Christ.  As a symbol, it has been in art and text for at least a thousand years and maybe much, much longer.  It is not difficult to find examples, many that most people would recognize.

You don't have to know that. It's a special kind of nerd. It doesn't bother me that not everyone knows or cares about Greek letters. What does bother me is people who should know- people with a platform and an audience, spout off without bothering to check. I am not asking for hard research here. Roughly fifteen seconds on the internet answers the question. Some of the biggest names in Christian leadership are spreading inflammation. If you're not angry, you're not paying attention, or some such thing.

Here's the thing.  There are plenty of actual arguments worth having. You want complicated questions, bound to inflame tempers, that don't have obvious answers?  I can list a few. You want to fight? We can do that. We can talk about immigration or torture or contraception or Obama.  We can talk about feminism. We can talk about mommy wars. It has been months since I have had a good argument about healthcare.  Or if you want straight non-controversial outrage, there is plenty of violence worldwide.

I was the second of six kids. One day, two of my siblings had been at it all morning. They were sitting at the breakfast table and already Dad had had enough. He took a cheerio from one of the cereal bowls and placed it between them.

"Let's see you fight about that!"

Seconds of silence. Then, one of them ate it.

"You ate my Cheerio!!"

Outrage is exhausting. This is silly.  Lets not fight about the easy stuff.  Merry (almost) X-mas, my friends.

Hope confronting violence

There are a lot of painful questions on the internet today.  What happened, Ferguson? 

Last night I went to bed hoping along with everyone that the people in Ferguson would hear pleas for non-violence. What happened?

A kid.  An angry kid.  A community, distrustful of the people sworn to protect them. What happened?

This morning, so many people on on their contradicting soapboxes, the noise is deafening. What happened? 

There is an evil- and I mean satanic- glee in some corners.  To take such delight in suffering is not human. It just isn't. 

There is rage. Disquieted sympathy. Agitated, agitating. 

A pressure cooker with a tiny clog is a bomb in the house.  Can we see the problem without pointing fingers?  

Sheltered suburban America.  We like to pretend that violence doesn't exist.  We create distance. It is a coping mechanism, and it works. Them. They. There. 

We want to comprehend.  We want a complete, tucked in, ownership of the story; a neat little box can be closed and stacked in the appropriate closet. 

I hear fear.  I hear rage.  I hear sniggering.  I hear pleas. 

"We are a nation of laws." Guffawing.  How can you laugh?

I need to hear hope.  I need to hear love.  I need to know that this challenge to change will be met.

"The fact is that no one can be by nature superior to his fellows, since all men are equally noble in natural dignity. And consequently there are no differences at all between political communities from the point of view of natural dignity." Pope John XXIII, Pacem in Terris

Where is the dignity?  What happened?

"Our families are torn by violence. Our communities are destroyed by violence. Our faith is tested by violence. We have an obligation to respond. Violence -- in our homes, our schools and streets, our nation and world -- is destroying the lives, dignity and hopes of millions of our sisters and brothers.
...
The best antidote to violence is hope. People with a stake in society do not destroy communities." 

Confronting A Culture Of Violence: A Catholic Framework For Action, A Pastoral Message of the U.S. Catholic Bishops

If we want to raise our children in a better world, we have to hope.  The anger, the pride, the cynicism, the resignation-- claim hope. Believe that we can be better- that we are better. Baby steps.  In my house, we will start by praying.

"God of peace, bring your peace to our violent world: peace in the hearts of all men and women and peace among the nations of the Earth."  Pope Benedict XVI

We will love.  We will learn. We will pray. We will hope.

"Blessed are the peacemakers,
for they will be called children of God."  Matthew 5:9

Habits. Part 2. Wherein we break bad habits. And I mean smash them to bits.

Summer is usually our down time.  Much of my support system is built on teachers, and they have summers off.  So, my support system is stronger, or at least more flexible.  Sarah breathes better in the summer. She is not sick as often.

This summer, we spent time at my Godmother's house on Cape Cod.  It is such a beautiful place. While we were there, Sarah breathed better than she ever has. It was a magical vacation. Since she breathed so well, and since ICU stays are expensive, we have decided to submit to insurance a claim for a house of our own up there. (We didn't.  This is a joke.)

After I got through my fight with anxiety, we had a few peaceful weeks.

Then, Autumn.  It used to be my favorite season.

Sarah started school, which is both the best and the worst news! (Yay class interaction and therapy!  Boo germs!)  I decided to homeschool Lily this year.  (I promise to write about that soon.)  Sarah had a surgery. (That too.)  We are facing cold and flu season.

But really, things seemed to be going well.

We joined a CSA over the summer.  We had decided to make general health a priority. Every week we collected a beautiful box of fresh produce from a local farm. Josh decided he wanted to run a marathon. I am so proud of him for setting such an ambitious goal!

He had been diagnosed with asthma about a decade ago.  He has not had trouble recently, but I really thought that if he was going to run a marathon, he should get it checked out and get cleared.  He went in for a full physical.

Good news! No asthma! He is clear to run!
Bad new: Diabetes.

The old truism, "Its not fair," comes to mind.

Diabetes.

New specialists.  New appointments.  New doctors.  You don't get to talk back when life hands you a rotten diagnosis, but you don't have to lose control either.  We have been learning a whole lot of stuff we never wanted to know.  Again.

We chose right away to spin it. This diagnosis hurts.  It is scary.  It is going to mean good things.  Not just for Josh, but for the whole family.

The day after the diagnosis, I cleaned out the fridge, throwing away anything Josh couldn't eat.  If he couldn't eat it, it didn't need to be in the house.  We're doing this as a family.  (Well.  Except the Halloween candy.  I am not that cruel.  I won't eat it now, but the kids still can.  Is that a reward?  We won't be doing mac and cheese anymore, at least not a main course.  Not even for lunch. But at least they don't have to share their Halloween candy!)

As soon as we told people, we got advice.  Vegan! Paleo!  (Wait. What?)  We basically lived on kale for a few days.  I like kale.  My husband (still) likes me. Kale is inexpensive and filling.  I tried four different preparations in that first week.  (Josh liked one of them!)  Thankfully, he had an appointment with a dietitian to make a personalized meal plan.  I went with him.  I am doing this too.  What the heck is a diabetic diet?  I'm an excellent cook, but I need to know the rules.  What are the rules?

Diabetes is, among other things, a battle against bad habits.  Good food is good.  Bad food is very bad. Exercise is important.  Count. Pay attention. Measure. No cheating. OK. This is going to be good.  This is not going to be easy, but it is going to be good.

We've been promised that at some point you stop wanting terrible foods. I don't know if that's true.  Breaking habits is hard. What will my new go to its-5:30p.m.-and-I-haven't-cooked-anything dinner for the family be?  (Fish, if you are wondering.)  What will I reach for if I'm hungry at 3:30?

We are only a few weeks in.  We are learning.  I still like Kale, but I've diversified.  Josh is training for his marathon.  I'm not, but I get up and exercise when he goes out to run in the morning before the kids are up.  The kids have stopped asking for dessert.  Becca joins me in eating Kale, even when no one else will.  This is going to be awesome.

Habits. Part 1

Anxiety crept in.  Sleepless night after sleepless night, culminating in an unnerving fear which depleted me.  I thought I was dying.

I called my sister. I was alone with my kids.  Somewhere in my irrational mind, I knew I'd be OK, but I didn't want to be alone.  I didn't want to talk, I just wanted to know that if I fell, someone would know and take care of my kids.

I made an appointment with my doctor.  Anxiety.

"But it didn't feel like anxiety!  It felt like I was dying!"
"That what a panic attack is."

Knowing I was healthy was actually enough to stop my panic attacks, but it sent me searching. How? Why?

It turns out anxiety and depression are both pretty common among special needs parents.  We don't get enough sleep.  We are often isolated.  Even when we are with friends, it can be hard to talk.

Our friends are tired of hearing about medical stuff which is mostly gibberish to them.  How many times have I stopped myself from yammering on about how the stupid pulse-ox kept me awake all night even though the sats were fine.  We see it in their faces.  They want to be sympathetic.  They are sympathetic.  But they are also tired of hearing the complaining.  We are lonely.  Our friends have become a "they."

It is so easy to feel sorry for yourself.  It is so, so easy.  When every story, even your happy stories, are so foreign to your listeners that when you get to the end they give you sad eyes. "I'm sorry."

It is so easy to lose your optimism.  Take your eyes off the light for an instant and you are lost, wandering in a foggy maze of dead-ends and what-ifs. Troubles, real and imagined, haunted my mind. My kids. My health. My husband's health. Echoes of political unrest all over the world.  Viral images from Facebook kept me awake. All these jumbled and more, shadowy phantoms.

I'd watch mind-numbing TV for the express purpose of numbing my mind. I'd choose shows for their vacuous appeal.  As I'd finally drift off to exhausted sleep, one worry, any worry, would set my heart racing. There is just so much evil. I'd get sick and be up another hour trying to calm down.

I had never thought of myself as a weak person, but I was enfeebled.  Broken.  Depression is an ugly thing. And the worst part, it is self feeding.  You believe terrible things. I felt guilty for feeling depressed.

Writing can draw out the poison.  The internet is cluttered with people pouring their pain into an anonymous polity. I didn't even want to write. Words form thoughts, and to be honest I was afraid of what I might find if I started feeling around for form in that darkness.

I have an incredible support system.  My husband, ever strong, gentle, and kind, would not let me wallow.  My parents and siblings listened and took time to understand the medical gibberish so I never was isolated, certainly not as isolated as I felt.  I do have friends- good friends, and some of them understand the gibberish.  I don't know how I fell.  If there is a straw it is well hidden in the haystack.  I don't know how I got back up. That is a post for another day.

I do know how I muddled through and never actually lost hope.

People like to rag on habitual prayer.

"In praying, do not babble like the pagans, who think that they will be heard because of their many words."  Matthew 6:7

I imagine God as Eliza in My Fair Lady. "Words, words, words! I'm so sick of words! I get words all day through, first from him, now from you!  Is that all you blighters can do?"  Let's not analyze that too deeply.

Habitual prayer was my lifeline.  No matter how my words failed or how deep set my fears, I was going to pray a few times a day.  Morning and evening prayer.  Grace before meals. Every time I was afraid. I couldn't see where I was going, but there was a thread to hold.

When I am scared, really scared, I recite the Memorare.  When I think about it, I believe the words of the prayer but when I am scared, it is just words. Comforting, comfortable, familiar words.  But, it is not a magic spell, it is a plea.  I'm not babbling.  I'm crying.  And He hears.  And He answers.  Every time.

I always tell myself I will update when things have settled down.

SVT update: Sarah has been stable on her new medication. Yay!!

But things have not settled down. Sometimes they don't.

Last week, my sweet Rebecca caught a cold. She is still a baby, but a strong, healthy, nine month old baby. The cold barely slowed her down. It was enough to make me move her back into our bedroom at night, so we can monitor more closely, but otherwise normal life.

Sarah had a sleep study Wednesday night last week. She failed, but that is not the story. That just means she still needs her vent at night, which is not a surprise. The story behind with Miss Sarah and her father trekking home Thursday morning. That was the morning of snow. They made it safely in to our home town, but got stuck outside our neighborhood. Our street was not plowed.  Thank God for good neighbors.

I was home with a sick baby and Lily. Josh was one block away, but with Sarah and ask her emergency supplies. The car was stuck. One block was to far too walk. Our Godsend of a neighbor literally ran through the snow with shovel in hand to rescue my family. They were eventually able to flag a plow and between them, they got home safely.

We enjoyed the snow day as much as anyone else, and more than many.  The whole family slept in.

But Friday Josh had to work. And Sarah got sick. Thankfully, Sarah's nurse was able to come.  Two sick kids and one very well, unless cabin fever can be considered an illness.  Poor Lily was going crazy.  Friday morning was rough but by the evening, things were reasonably settled.

We watched the cold carefully over the weekend.  Becca was not better, but not worse either. Sarah got better on Saturday, but then progressively worse all weekend. Monday we made an appointment with our pediatrician for both kids.  Monday, I got mastitis. (Treatment: nurse, antibiotic, limit stress.)

 We were still able to treat all the symptoms, but since things were getting worse and poor Becca had been cheerfully fighting this cold for over a week, we figured we needed a doctor.  The appointment was on Tuesday. Rebecca made it to her appointment, but on Tuesday morning Sarah woke up still worse. We could not take her off her vent.  She needed oxygen. She was working hard to breathe.  We took Sarah to the DR, and they transferred us almost immediately to Children's in D.C..  So, here we are. Two kids sick. Both diagnosed with RSV and double ear infections.

Today is Wednesday.  Sarah looks awesome, but she is actually worse than yesterday. She is getting the sport she needs to breathe easily, and so she is happy.  I have no idea how long we will be here. I hope this awful virus had peaked and tomorrow will be better. Tomorrow will tell.

Josh is home with the ends (Becca and Lily). Lily has school and so they cannot come stay in D.C.with us.

At the moment, my biggest concern is for Rebecca.  My tiny love is refusing the bottle. If we do not keep her hydrated, we will soon have two kids in two hospitals. Becca needs to drink.  If she does not very soon, I will leave Sarah in the hospital, and come home to nurse Becca.  RSV is awful. Please, pray with us that she can beat this at home.

Lily is Lily and seems well. She is wound tight, as she always is when we are all apart as a family.

We need prayers. For health. For home. For sanity. For sunshine.

The good news is, Sarah is remarkably cheerful. I am feeling better. And we have made our decision about school next year. We will absolutely be homeschooling.

When Josh and I got married we borrowed a line from Anne of Green Gables for our favors. We made tiny jars of jams and jellies and attached the verse, "God loves preserves and saves us."

I am contemplating a better punctuated version of the verse tonight.

Update

Sarah is in the hospital again.  I am very tired, so this is going to be more update than contemplation.

On Sunday, I put Sarah down for a nap at about 1 p.m..  I do not usually put the pulse ox on at nap time, because I am usually in the room with her and I can watch.  But, I had to get things done.  So I put the pulse ox on so I could walk away confident that if something went wrong, I would be alerted.  The pulse ox measures her pulse and her oxygen level.  Honestly, I have paid very little attention to the pulse.  I have a pretty good sense of what her normal numbers are, but if it is a little high or a little low, I would not notice until it set off an alarm.  The number I am used to watching is her oxygen.  When she has had trouble breathing, that number gives us an idea of how bad it is and whether we need to intervene.  

The pulse ox was alarming.  Her oxygen was a perfect 100%.  What could be wrong?  Oh.  Heart rate is 230.  Well, that is not a real number.  I did not think twice.  I had the number I needed, so I turned the machine off and just checked on her throughout her nap.  

Bed time.  The pulse ox is alarming.  Heart rate is 230?  Again?  I moved the sensor to the other foot.  230.  I checked a finger.  230.  I got a new sensor.  230.  There is no way this number is real!  Sarah has looked fine all day!  230 is not just high, it is absurdly high.  Out of the realm of possibility high.  Even as I watched her begin to show signs of respiratory distress, I still could not believe that number.  I called our friend who is a nurse.  I wanted to say, "Can you come check her pulse, so I can have a real number, so I can go to bed?"  I think I actually said something that sounded more concerned.  

She did come.  The number was real.  Away we go in an ambulance.  Do you know how many people come to your house if you call and tell them you have a two year old with a high heart rate?  Neither to I.  I lost count.  But the freshly cleaned carpet all the way up to my daughters room will attest to the grand number.  You cannot very well tell the paramedics to stop and wipe their feet.  

I begin to beat myself up.  

How could I have let my daughter sustain a heart rate that high for eight hours?

In the ER, they ask all the typical questions.  When did you first notice something was wrong?  (I didn't!)  How did you first notice something was wrong?  (I tried a battle of the wills with a machine, but the pulse ox won.)  Has this ever happened before?  (...)

What?  A heart rate so high I simply do not believe it is happening?  There were no symptoms?  I should have seen something, right?

EKG.  The EKG looks normal.  So the doctor thinks it is a regular but really fast heart rate.  That can be caused by dehydration.  IV fluids.  After a few hours, the heart rate comes down.  We go home, reasonably confident in out dehydration diagnosis.  How did she get dehydrated?  We are not really sure, but trached kids can lose fluid faster just by breathing fast or coughing.  Sarah had a slight cold.  So, a cold, and not a bad one, has sent us to the hospital, but not with respiratory distress.  

We were happy to have only spent hours in the hospital.  No admission.  We were home with a diagnosis and a relatively easy treatment plan.  We were going to have to treat the cold.  The hardest part was the order for breathing treatments every four hours.  It seemed excessive for a cold that was barely existent, but we were too happy to be home to argue.  Being proactive with a cold made sense, we have seen tiny little colds turn into pneumonias.  We added extra water to her diet to make sure she did not get dehydrated again.  

Easy enough.  She seemed well.  Everyone was happy. 

Until the day before yesterday.  Heart rate 230.  Wet diaper.  Tears.  Drool.  Beautiful color.  No respiratory distress.  Heart rate 230.  What is going on??  All of the sudden, I am worrying about Sarah's heart.  

But...but...but... That is not fair!  Her heart is fine!  Cardiology cleared her when she was under a year old!  

Back to the ER. Same questions.  Has this ever happened before?  (You mean other than two nights ago?)

Story time, while we wait for the EKG.  

About a year ago, we were in a hospital.  (Unnamed, but definitely not children's.)  The monitor reported a very high heart rate.  I remember the number, because I have told the story often.  It was silly.  It was absurdly high.  It was 230.  They looked at the number and they looked at Sarah and they did not believe it.  So they moved the leads.  230.  So they changed the leads.  230.  So the got a technician in and swapped out the monitor.  230.  They alarm simply would not stop alarming, so they turned the stupid thing off.  

Is this the same thing?  

EKG shows a possible SVT.  (More on that.)  The test is both treatment and diagnostic.  They give a drug.  If the heart rate comes down and stays down, it is SVT.  

SVT (Superventricular tachycardia) is a condition where the heart beats  really fast sometimes without apparent cause.  Basically, the wiring is screwy.  There is a short, the heart gets confused and is starts repeating.  Sometimes it goes too fast to be effective, which causes all kinds of obvious problems.  Sometimes is stresses or fatigues the heart.  Sometimes there is heart damage.  Sometime the heart gives out.  Worst case scenarios are terrifying.  The drug is like a reset button.  It slows the heart.  If it is SVT, the heart rate goes back to normal and stays normal.  If there is a different cause, the heart rate goes back up.  The drug works very quickly.  I watched it, and it was immediate.  Sarah, who had not seemed unhappy, perked up.  The monitor showed her heart rate drop from a terrifying 230 to a more normal 120.  Sarah was blowing kisses.  She did not tell me something was wrong, but boy did she express gratitude when it was fixed.  Should I have noticed?

Our hospital cannot admit trach dependent kids, so they send us away.  We are admitted at another hospital.   SVT.  We get a new set of specialists to follow with for the next few years!  At some point, there is is a procedure which can usually resolve the issue.  It is not safe for a two year old.  So,  for now, we medicate.  

The usual medication works in the opposite way that albuterol works.  Albuterol is Sarah's rescue medicine for breathing trouble.  We cannot mess with its effectivity.  So, after some back and forth, we decided to start a different medicine.  Three times a day, for the next few years, we have to give Sarah an oral medicine which will slow down her heart.  Properly dosed, we should not see any more scary heart rates.  Over dosed, and her heart rate will skyrocket.  Underdosed, it is ineffective.  We spend at least two days inpatient, to make sure she does not have any awful side effects.  

Reading the psalms:

"God is our refuge and our strength,
an ever-present help in distress.
Thus we do not fear, though earth be shaken
and mountains quake to the depths of the sea."  Psalm 46:2-3

 "The Lord is my shepherd." Psalm 23:1 

"Give thanks to the LORD, for he is good,
his mercy endures forever." 118:1

God is good.  

Miss Sarah looks amazing.  She is cheerful and playful.  She wants to go home and keeps asking for Daddy. But she really is doing well.  Praise God!  And we caught this, which many kids live with for many years, before it caused any damage.  His mercy endures forever.  

"Immediately Jesus stretched out his hand and caught him, and said to him, “O you of little faith, why did you doubt?"  Matthew 14:31

He stretches out His hand and catches me.  He chases away doubt and fear.  Our God is powerful.  Our God is awesome.  Our God is Love.