Trach or trache?  I know everyone spells it without the 'e', but that makes me want to pronounce it with a short 'a' sound and "ch," like chin.  What a horrible word.  It looks wrong.  The term is not technically correct in the first place, it is just a shortening of tracheostomy.  Slang.  I can spell the nickname for my daughter's surgery the way I want, right?  Maybe not.  I will probably cave.  Google, which is never wrong, reports that medical transcription accepts both trach and trake as abbreviations.  Trach just has to be wrong, and trake sound like a toy.

Sarah will have her trache placed today.  We hope.  It is an "add-on procedure."  That means that they will fit us in where they can.  Barring cancellations, we are "scheduled" to go in when Dr. Pena finishes her actual schedule, at 4 p.m..  If there is an emergency, we get bumped (which might mean next week, since it is Friday.)  If there is a cancellation, we go at once.  If she runs late with her other surgeries, we will go late.  

For at least five days following the surgery, Sarah will be considered a "critical airway."  That means that no one except ENT can touch the trache- though I assume that respiratory therapists will still be giving her regular breathing treatments.  After the first trache change, nurses and respiratory therapists will be allowed to care for the site, the suctioning, and whatever medicine she needs- all of which they will be teaching me and Josh.    

I talked to the the hospital case manager today.  Her goal is to have the nursing in place by the 25th, so that if Sarah is ready, home nursing and equipment will not hold her up.  That would be ten days after the surgery, which is pretty optimistic, but it is possible.  

From now until the surgery, I am spending my time thinking through what we will need and where we will put it.  We will be getting rid of a twin bed because in its place we will need a desk and chair.  We will empty the closet, making room, we hope, for all her supplies.  I am pretty sure the only new furniture we will need is a desk and chair- until the new baby comes, of course.  I have no idea how we will sort that out, but one step at a time.  

For now, I am off to make lists of what we have to collect, clean, move and sort to get ready for these big next steps.  

Delays

It is Tuesday, and Sarah did not get a trache.

The day before yesterday Sarah spiked a fever in the morning.  It was treated with Tylenol and went away and has not come back.  No one was particularly concerned.  The team sent both blood and respiratory cultures to make sure there was not an infection.

Sarah has a bacterial pneumonia.  So we cancelled and we are trying to reschedule.  Currently, we are hoping that the OR scheduler can fit us in on Friday.  (I am thinking that the job of a scheduler in a hospital must be the least rewarding and most difficult job in the hospital.  You take calls all day demanding that you invent time that is not there.  It is always and emergency.  It is always important.  I hope she can do this!  Maybe I should be praying for this under-appreciated nameless person.)

Why does a delay of a few days feel like such a long time?

We have been in the hospital for four weeks today.  After the surgery, it will be between five and seven days of "critical airway" which means heavy sedation and definitely ICU.  After that, healing takes as long as healing takes.

The good news it that we heard from our insurance.  They will cover home nursing up to a certain cap which should buy us enough time to get secondary coverage.  The hospital case manager is working to expedite approval.  That same coverage will also cover any medical equipment needs beyond what our insurance will cover.  You would be surprised at home much these things cost!

"Trust in the Lord with all your heart,
on your own intelligence do not rely;
In all your ways be mindful of him,
and he will make straight your paths."  Proverbs 3:5-6

We are trusting that God knows what He is doing.   Trusting God, not my own intelligence, is hard.

I want to know.  The more difficult a thing is, the more I want to know.  I cope with stress by asking questions.  None of that is bad, unless is becomes an impediment to trusting in the Father.

Why did Sarah get sick again?   I want to know!  It is not fair!  Delay after delay after delay, we had finally found a path that would get us home- and it is not as though it was a short or easy path!  And now this.  I cannot argue.  I cannot fix it.  I cannot understand.  All I can do is wait.


Lent begins tomorrow.  The devil always works harder in Lent.  I guess I don't know that.  But it has been my experience.  Temptations always seem harder during Lent.  I never remember that it is Friday until I have a hamburger in my hand- at which point I try to convince myself that I still have not remembered.  See how clever he is?  Forgetting is not a sin, but remembering and doing it anyway... but it is so much harder to put the burger down than to never pick it up!

Obviously, we all have our temptations.  I won't share all of mine.  Just one.  My desire to understand, and my confidence that I can, sometimes means I try to squish God into comprehension.  I want things to fit.  I want tidy little packages of truth that fit neatly together into a beautiful mosaic of a world.  Maybe it is that way, but if so, God is the artist, not me.  I do not get to collect the pieces and arrange them as I like.

I said it before: I think we need the rug pulled out from under us every once in a while, so we can land on our knees.  Maybe if I can trust God a little more, I can get a glimpse of His artwork.

So, we are going to be in the hospital for a few days longer than we expected.  Six weeks (four past plus two ahead) puts us in the ballpark of forty days.  I am not going to stop asking questions.  I am not going to stop trying to understand every change to my daughter's health.  But I can try to put more trust in God.  Not just that He will take care of my family in some long-viewed obscure way, but that He knows what He is doing every step of the way and I don't have to.

On Tuesday Sarah will get a tracheostomy.

This is good news.  It is really good news.  For Sarah, a trache means fewer trips to the hospital.  She has had enough.  It means that she will not need to be intubated for future surgeries, at least until the trache is removed.  It means she has a secure airway.  As soon as we are comfortable with the care (!!!!) life will be less dramatic and scary.  We will be able to see sooner if she needs help breathing, and we will usually be able help without a trip to the ER.  This is very good news.  

But it will not be easy.  As far as leaving the hospital, we believe that this might be the fastest and is certainly the safest route home.  After the surgery, she will be considered a "critical airway" for the first five days.  No one can touch the trache except ENT, who placed it.  

How fast we get home after that depends on how fast she heals and how fast we can learn.  

There is a lot to learn.  We have started the process of applying for supplemental insurance, because we will probably have to have overnight nursing.  (So, yeah.  An extra person in my house.  Do you think I can convince them to help with laundry?)  

And there is equipment.  I do not yet know what that will entail.  One considerable new thing will be a (more than one?) monitor.  Sarah will not be able to vocalize anymore, at least at first, so the monitors are important.  Without them, unless you are looking at her, you may not know something is wrong.  When she is well, there is a valve that we can get for her trache which will enable vocalizing- but even then she is not supposed to wear it at night.  Monitors matter.  

Lots to learn.  At least two more weeks in the hospital.  

The doctor came in the night before last and admired my strong baby.  "She is one tough girl.  She is a keeper!"
"No! You cannot keep her!  You get her well and send her home!!"

She laughed.  (Great doctor!)  "Well, I get her for at least another week!"  

That is the business end.  But the question we are getting most often is, "How are you holding up?"

That is harder.  The bumps have been bumpier.  Or something.  

We spent weeks watching slow improvements that were followed by much more dramatic setbacks.  Sarah had an event which, although it turned out well, was truly awful as it happened in the days following.  Lily has had a harder time this time.  We prepared her for a surgery followed by a short stay in the hospital.  It has not been short.  Pregnancy hormones make me more emotional.  It is difficult for the family to spend so much time apart. 

"Beloved, do not be surprised that a trial by fire is occurring among you, as if something strange were happening to you.  But rejoice to the extent that you share in the sufferings of Christ, so that when his glory is revealed you may also rejoice exultantly."  1 Peter 4:12

There it is.  Right there in scripture.  Life is going to be hard.  For everyone.  That is why there is so much good music about how God helps us through difficulty.  Trouble is a universal experience.  This story, our story, is unique.  But the theme is not.  The theme is common.  I have been reaching for Lily's favorite band, the Casting Crowns recently.

"I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you""

He is here.

Thank God for the Ronald McDonald house which makes it possible to be closer together when someone is at the hospital all the time.  Thank God for Josh's weirdo work hours, which give him four days off each week.  Thank God for our family and friends and prayer networks.  Thank God for the grace He gives us every day to face that day.  Thank God for a plan for progress.

So how are we holding up?  It depends when you ask.  We are grateful for your prayers. 

Truth in cliche: Life is a roller coaster.

I tried to write a post yesterday.  Maybe I will clean it up and post it.  Yesterday I felt as though I was blindsided.  All outward signs were good.  Sarah seemed to be improving.  Slow but marked improvement.  I expected that we would begin a slow wean on her oxygen setting.  I expected that we would be able to start to feed her.

Sarah had begun to play again.  She was waving her hands around and bouncing all over the bed.  She would scoot to see whatever she wanted to see.  She was not staying in whatever position the nurses or I chose for her.  She played peek-a-boo with me when I picked her up.  She asked for Da-da-da and La-la-la (Lily.)

She looked great!

And then she didn't.  Honestly, it was not dramatic.  Looking at her, I thought she needed to cough.  She need chest PT.  She needed to re-position.  The doctors decided to do an x-ray.  When they ordered the x-ray the question was simple:  Is Sarah maintaining or is she improving?  Neither, as it turns out.  She was working hard, and she was getting worse.  Her lung was collapsed again.

So she went back on the bipap.  And the PICU team got serious about getting all the specialists on board together to figure out what is going on and how to progress.  ENT will evaluate her airway.  Pulmonology will evaluate her lungs.  Plastics, who have been following all along and probably have the best picture, will weigh in.

ENT always says trache.  If there is a problem with breathing, that is their solution.  It is a good one.  It means a secure airway.  It means we do not intubate for future surgeries.  It means that whatever else happens, we can get air in her lungs.  Pneumonia, airway obstruction, lung disease etc., all the respiratory problems we have faced with Sarah would be easier to address.  And some would just disappear.

We have been resisting the tracheotomy.  If Sarah needs something, we will do our best to get it for her.  But she needs a lot.  So, my perspective has been to get whatever she needs, but to make absolutely sure she needs it first.  No extras.

We know she has had problems with her lungs.  We do not know what the problem is.  Without knowing what is wrong, how do we know whether this will fix it?

Today both pulmonology and plastics weighed in.  They both think she needs a trache.  A trache is not permanent, but no one will say how long she will need it.  They cannot.  What we know is that to do a good evaluation of her lungs, she has to get better.  We cannot evaluate her long term picture, we cannot know if there is a chronic issue or if there is what it might be, until we address the acute problems.

The next step might be to have a meeting with all the specialists, but it might not be.  I have spoken with them.  They agree.  What we are doing is not getting her well and it is not sustainable.  Trache is probably the best next step.

In preparation for that, Sarah would get a broncoscopy.  A mini-camera will look at her airway and lungs to assess what is wrong.  We might get firm answers.  We might not.  We will certainly get more information.  In any event, no one can think of an explanation for status quo which would be addressed in some way other than tracheostomy.

No decisions have been made.  But in case it is not clear, we are headed down what appears to be a direct path to tracheotomy.  That is new and a little scary.  But to be honest, it cannot be as scary as wondering whether or not she is getting enough oxygen, as we have had to wonder every time she has gotten a cold.  One of our favorite doctors wondered if her baseline at home has always been low oxygen.  It is a real and frightening possibility.

Lots of questions.  Lots of doctors.

We are praying for peace in facing all of this.  We are praying for answers and progress soon.  We have spent three weeks in the PICU.  We want to go home.  

Off Bi-pap, with faith and hope.

"Amen, I say to you, if you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”  Matthew 17:20

This mountain is moving.  It turns out, the mountain was bigger than we had thought.  It is still just dust to the power of our Lord.  It is hard not to be discouraged.  Just like in the early months, every time we make progress there is a setback.  One step forward, two steps back.  On Tuesday we will have been here for three weeks, and the end is not in sight yet.  Sarah has to be able to wean down on her oxygen support.

We have not made significant progress, but we are not escalating care either.  Sarah is on the high-flow nasal cannula, with the same settings she was on when she extubated.  Getting off the bi-pap is progress, and I promise to get excited about it as soon as we get through twelve hours without someone mentioning the need to go back on bi-pap or re-intubate.  

I like the cannula.  Obviously, I want her to get well enough to be off support, but as support machines go, this one is OK.  I can see her beautiful face.  She can see me.  It is easy to take off and put on.  If she pulls it off it is not critical- I can fix it.  That means I can pick her up and hold her without the nurse's help.  When she is awake, she can move around quite a bit on her bed and it does not make anyone nervous. I cannot imagine that it feels awesome, but she seems more comfortable.  

“Come to me, all you who labor and are burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for your selves.  For my yoke is easy, and my burden light.”  Matthew 11:28-30

This verse was on my mind as I was trying to go to sleep last night.  How?  How do I give this burden to the Lord?  Am I supposed to find this easy?  If I had more faith..?  

My experience of being Christian has usually aligned more with C.S. Lewis:

“I didn't go to religion to make me happy. I always knew a bottle of Port would do that. If you want a religion to make you feel really comfortable, I certainly don’t recommend Christianity.”

Except that Port is not my beverage of choice.  

I have thought about how to find joy in suffering.  I was moved reading about perfect joy in the Little Flowers of St. Francis a long time ago.  It makes sense to me that in our suffering we can come closer to our Lord in a very real way- and in that there is a joy to be found which supersedes any anywhere else.  

But none of that is easy.  What is this easy yoke?  

It is not easy to worry about a sick baby.  It is not easy to string all the various parts of our lives into coherence.   I worry about a lot!

I worry about my baby who spends more than her share of time in the hospital.  I worry about the effect this separation will have on her older sister.  I worry about meeting Lily's emotional, spiritual and academic needs.  I worry about bills.  

I am about halfway through my third pregnancy, and I worry!  How will I balance hospitalizations with a newborn?  How often are we going to have to do this?  This was only supposed to be three of four days and we are coming up on three weeks!  I have to get home to get ready.  I don't even know what I need yet.  I have bins of baby clothes, but they are not sorted.  I have a car sear, but at some point I will have to look up whether or not it has expired.  We cannot fit a third car seat in our car.  

I know that no one worries about all the rules for pregnancy after the first.  (I tell myself that anyway.)  But I am so far away from the rules...  I worry.  Eat every four hours?  I ate two meals today.  One real meal and a granola bar.  When I am home I am better, but here I barely give eating a thought.  I only brought one week's supply of prenatal vitamins to the hospital, and I keep forgetting to ask for more.  My blood pressure has been bordering on high for the past few visits- between the coffee and the stress this cannot be good.  So I worry.  

And then I feel like I am doing something wrong if I admit that I don't have it all together.  I was so nervous the other day when I thought Sarah was going to be re-intubated, I got sick.  It did not occur to me until the next day to tell anyone that I was nervous.  

It is not easy.  Is it supposed to be easy?

I cannot imagine that I am supposed to set aside my fears and my worries.  Can I give them to God?  I am working on it.  I know that when I have prayed for peace, I have felt peace- in spite of all my worries. Where is the line is between trusting in the Lord to provide and making sensible choices for myself and my family?  

There isn't a line.  When we are listening to God and following His plan, we can simply trust.  He does care about the little things- all of them.  What is the light burden?  It certainly is not a promise that nothing will go wrong and life will go smoothly.  I think the key is in the middle of the verse.  "...learn from me, for I am meek and humble of heart..."  Learn from Him.

It is not a matter of setting aside things that you cannot set aside, like the pain of loving someone in pain or the necessity of finding ways to provide.  It is not a matter of choosing to be positive in the face of difficulty.  It is not a matter of anything we do or don't do at all.  

The rest offered is found in humility.  Giving God our troubles does not mean that they go away.  It means that He will show us how to face them.  When it is hard, He will lead and lift and love.  It is hard when we take hold in arrogance, when we claim the battle which we have no hope of winning.  When we face the same battle as the footman, not the leader, it is easier.  Especially when the leader is an all-loving, all-powerful God.  

I do not know what the next few years will hold.  I do not know what the next few days will hold.  

The easy yoke is not a promise that life will be easy.  It is a promise that God will carry me.  When we talk about laying our burdens at the foot of the cross, we cannot imagine that they will disappear.  Through the power of God's love for us, our burdens unite us to His Son.  He has the strength, and we have Him.  With humbled hearts, our burdens take shape as road signs on the narrow path toward God.  

And, maybe we can have a little Port along the way.  

The good news this week has been great!

Sarah had an EEG that showed nothing out of the ordinary- she is not having seizures after last week's event.  She had an MRI that was clear.  There is no swelling or bleeding or damage in her brain from last week's event.  She successfully rid herself of her breathing tube.

The bad news has been very difficult.  When she self-extubated, she did not transition straight to room air.  She was put on a machine which pushes air in through her nose.  You choose the "flow" and the percent of oxygen given.  The air we breathe, room air, is about 21% Oxygen, so that is the goal.  But if you can get the flow down to 5 liters per minute, (pretty sure about the number) you can switch to a regular nasal canula.  That transition is important because it comes with a get-out-of-the-ICU-barring-other-issues card.  Sarah was at 100% oxygen and 14 liters.

It has been a roller coaster of ups and downs on rates and treatments and flow for the past few days.  Physical therapy came and moved her around, which was good for her muscles, but also helped her to move stuff around in her lungs.  A few good coughs and she looked better than she had looked in days.  So, the rate and flow came down.  But then she needed help, so back up.  And down.  And up.  Yesterday it looked as though she was finally on a slow, but steady path upwards.  She had a great night last night.  She had a great morning.  Things were so good that Josh, Lily and I spent three hours together out of the hospital.  We did not do much, we just enjoyed our time together.

When we returned, Sarah was struggling.  Her doctors were clustered around a computer outside of her room looking concerned.  Apparently, she had started to have some trouble.  Re-positioning, which had worked well before, had no effect.  Her breathing was labored.  Her oxygen saturation was too low for comfort, and it was dropping.  They got an x-ray in a hurry.  So when we showed up, they were looking at a picture of a collapsed lung.

This was probably caused by a mucus plug.  She had a lot of gross stuff, as we knew.  (Boogers, as Lily explains.  "Why are you calling other things, Mom?  Its just lots of boogers.")  But if she cannot clear it our, her body still needs air.  We have to get air in.

The doctors think that it is likely she will need to be re-intubated.  Knowing her history, and what an enormous set-back that is, they will try everything else first.  In fact, they had already tried almost everything else.  Last resort: bi-pap.  This is a mask over her nose and mouth that pushes air in.  It is not just an oxygen mask, it is a closed and pressurized system.  It can measure how much pressure and how much air it takes to fill her lungs.  It is pretty cool.  Since Sarah is a mouth breather and the nasal cannula is not working, we have high hopes.  But there is a drawback, and it is a big one.  You cannot suction.  She will have to manage her secretions with out help or the bi-pap won't work.

They are going to watch closely.  If she gets worse, intubation.  If the blood work shows that the gases in her blood are not well balanced, intubation.  If the repeat x-ray two hours after she starts on bi-pap does not show significant improvement, intubation.

I made the respiratory tech show me the x-ray as soon as he could.  I was not going to wait until a busy ICU doctor could come explain it.  He said, "You may do a happy dance, if you like!"  !!

It is not an x-ray that would inspire a happy dance under most circumstances.  But it is a marked improvement.  No intubation tonight.

We are not out of the woods by any means.  Intubation is still on the table if she gets worse or does not get better.  And if intubation, then tracheostomy is on the table as well.  We will get Miss Sarah whatever she needs, of course, and if she needs a trache, that will happen. It is something we hope not to need.

We are trying not to be discouraged.  We are clinging to the small successes, even when they seem immediately followed by setbacks.  We are asking for your prayers.

"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit."  Romans 15:13

I was singing to Sarah tonight, who seemed a little afraid of this noisy new machine.  She wants to rub her face, as she often does when she gets tired.  She was looking helplessly at me.  It was very sweet and very pitiful.  So I sang and I held her hands.  When I let go of her hands to comb my fingers through her hair and stroke her cheeks and forehead, she lifted both hands and conducted.  That's my girl!  My brave and wonderful baby still loves her music.

Then a respiratory tech came in to mess around with the machine and I asked if she would say hello.  She looked at me and shook her head no, emphatically.

These are little things, but we love the little things.  She is herself, and not so very discouraged.  I can take courage in that.