We have plans to leave the PICU!

Sarah's doctors feel that the best next step for her is to transfer to a sub-acute facility.  There are some definite pluses and minuses with this plan.  I feeling my way toward comfort with the decision.  It is my decision at least in part, after all.

The day before yesterday we were very excited.  We felt very encouraged by Sarah's strides toward health.  Then entered a parade of doctors.  First plastics came.  They are wonderful.  They don't really have much to do with her stay, at this point.  She is well healed from the surgeries.  Good news.  Then neurosurgery came. They were mostly just visiting one of "their" patients.  They ordered a CT, because it has been awhile, and there is some redness on her head, close to the top of her shunt.  The CT was just ambiguous enough to warrant further testing- so they "tapped" the shunt.  (They used a needle to collect some fluid and also to make sure that the pressure was OK, and the shunt is working.  The fluid is sent to the lab to check for infection.)  Then the PICU team came in.

Yes.  Sarah is doing well.  Yes.  She has weaned quickly and well from both sedation and the vent.  But, they think that her path home is going to take weeks, not days.  Gut punch.  We have tried to stay optimistic for weeks, and in the past week it has been easy because Sarah has been doing so well.  She plays and smiles and tries to bounce out of bed.  She expresses herself well, and has favorite doctors, nurses and therapists.  (Last night a favorite respiratory therapist was doing chest PT, which means he was thumping her chest with a small, soft, rubber, "percusser" to loosen stuff in her lungs and help her to cough it out.  She reached out her hand and started patting his chest in just the same way.)  She is acting like herself.

She is acting like a particularly happy version of herself.  It is not that she was never happy, but for the past couple of days, it seemed like she was happy as often as she was awake.  I don't know if she was just pleased to be able to do more because she has fingers now, or if she had been struggling to breathe more than we thought and so the trache makes her happy, but either way she has been happy.

Weeks?

Sarah is on very low vent settings, but she also has lung damage.  To go home, we do not just have to decide whether or not she needs a vent, we have to figure out what the settings will be.  That will take some time.  And then Sarah started withdrawing from her narcotics yesterday.  Getting that under control will take some time.  She does not need acute care anymore, but neither are we in a stable and ready to go home.

We want to go home.

HSC is right up the road from Children's hospital in DC.  It is supposed to be a very beautiful facility where Sarah will get much more therapy.  Unlike the ICU focus on acute medical needs, which we do not need, their focus is on rehabilitative therapies.  They are very good at training families for equipment needs.  They will ultimately be the ones who will get us the adaptive equipment she needs, like a stroller, a bath chair and a stander.  This is are good relationships to have.  We expected to begin these relationships outpatient.

On Monday we will move.  The bad news is that the nurse to patient ratio is much higher- of course since it is not acute care.  We will probably not have out own room anymore.  We will still be living in DC, not home.  The good news is Sarah will get more physical, occupational and speech therapy.  She will be working with a team that can begin the long process to get her the equipment she needs.  She might not have to stay in her hospital room!  They have other therapy rooms available to their patients.  There is a playground which Lily can use, when she comes to visit.  Let's all pray it is wonderful, but also that we don't have to stay very long.

Oh.  And the fluid from the shunt has not come back from the lab.  We certainly do not expect it to show an infection, (no one does or we would be staying here in the PICU) but we can give that concern to our Lord as well.

We are still in the PICU.

I have been trying to focus on the day by day- which has actually been both dramatic and positive the past few days.  But Lily cannot do that.  Lily wants to know when we are going home.  "Soon," I am afraid has come to mean its opposite in her mind.  Soon means not now and we don't know when.  Soon meant days at first, but that was over a month ago.  Then soon meant probably a few weeks, but it is week seven.  (I think.)  To a four year old who wants to go home, seven weeks is pretty much the opposite of soon.  For all of us, really, but her especially.  We want to go home.

"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access [by faith] to this grace in which we stand, and we boast in hope of the glory of God.  Not only that, but we even boast of our afflictions, knowing that affliction produces endurance, and endurance, proven character, and proven character, hope, and hope does not disappoint, because the love of God has been poured out into our hearts through the holy Spirit that has been given to us."  Romans 5:1-5

We are on our way though.  Truly.  Soon.  Soon relative to how long we have been here, not how long we thought we would be here.

There are medical things keeping us here.  Her vent and her sedation meds.  As of today, we are done with narcotics!  (You are cheering, right!?)  We have one more drug that has to come down before we can go home, but it is the easier non-narcotic one.  Yay!  From the perspective of sedation meds, she should be ready in a few days.

The vent settings are actually really low.  She has done well on a number of "Cpap trials,"  which is very similar to the ERT trials we did before extubation.  The machine does not give her any breaths, so she has to breath on her own.  It is still giving some support though.  It is giving some pressure and the air coming through the vent is not room air, it has a higher percentage of oxygen.  She has done very well, but there is some concern that she does need that light support.  So what is next?  We have to determine if she needs it because there is damage to her lungs which will heal in time- but over quite a long time.  Or maybe she needs it because her airway is "floppy" and so it closes of sometimes and causes her to inhale some secretions.  Or she might need it simply because she has been heavily sedated, ill, and missing a lot of nutrition (for various reasons) over recent extended weeks.  The real question is: will Sarah need ventilator support for a week or two more, or much longer?  Or even more practically, will we be going home with a vent or not?  If we need one, the process of getting one takes time between insurance, home inspection (making sure our electricity is safe and can handle it), and equipment supply.  If we decide she does not need one, we will be transitioning to a "sub-acute facility" for a few weeks.  I am rooting for whatever gets me home the fastest.

We will be home soon.

We have had a few difficult days.  It was difficult to watch as Sarah seemed to get worse.  It was difficult to worry about her pain and emotional state while she was on a paralytic drug and could effectively let us know much of anything.  It was difficult to monitor clinical signs- numbers and more numbers- more than my baby. By now, I know the numbers.  I know what they should be.  I know her happy heart rate, her sleeping heart rate, her regular respiratory rate, her girth etc..  I also know to trust her more than the numbers.  The paralytic drug made me crazy.  I watched those numbers with more vigilance than I ever had.  

Then I got sick.  All afternoon I told myself that I was just tired.  As afternoon progresses into evening, symptoms arrived that are not rationally explainable by exhaustion.  I had a bug.  I had to leave.  Sarah must not catch whatever I had.  I wiped everything in the room with those yucky hospital wipes, and I went home.  It was very difficult to walk away from Sarah.  Josh could not come.  No one other than the parents can stay overnight.  

I spent two nights at home.  Today I came back to the hospital.

Sarah had her first trach change and that means that Sarah is off the terrible, horrible, no good, very bad, paralytic drug!  Sarah is weaning on sedation and on her vent settings- and doing very well with both!  Most exciting of all: when I came in today I did not have to measure her well-being using mysterious and interconnected numbers.  Sarah was smiling.  She smiled when we talked to her.  She was sweetly argumentative.  (Sarah likes to shake her head no when she knows you are hoping she will say yes.  She smiles as she does.  "Will you say 'Hi' to Mommy?"  "Were you well-behaved last night?")  Her numbers look good too.  But I can ignore them again.  

And now she is asleep.  It is the sleep of a tired child.  It is peaceful and lovely.  It is the "sleep" of sedation.  She was awake and playing and happy all day.  Now she is asleep.  Hopefully for the night.  One of these days I will get around to exploring some of the thoughts and emotions rattling around in my head and heart.  Tonight I will sleep.  

Trach(e) is in.

Sarah had a tracheostomy placed late on Friday.  When the surgeon came out, much later than expected, she was smiling.  Smiling surgeons post-op are always good.  "Sarah is a complicated kid."  That is not exactly what I wanted to hear, but so long as the surgery went well...

 

There were three procedures: Pulmonary broncoscopy to look at her lungs, ENT broncoscopy to look at her airway, and the tracheostomy.  Both broncs were uncomplicated.  They just sent a tiny camera down her tube, which was already in place, and looked around a bit.  ENT did not show anything which would cause the problems she has been having.  Pulmonology showed that the airway into her left lung looks as though it is being pressed.  I have been trying without success to think of a good visual.  The bottom line is that this could cause all kinds of problems.  It could make it so that secretions that get it cannot get out easily.  (Thus repeat pneumonias in the same place?)  It could mean that less air is getting in.  It could certainly explain what we have been seeing in recent months, when she goes from looking relatively well to ER emergency very quickly.  They have ordered a chest MRI, when she is stable, to see what exactly is going on.  

The pulmonary bronc showed that placing the trache was going to be difficult.  Most people have rings of cartilage around the trachea.  The surgeon knows where to place the trache by counting an appropriate number of rings.  Sarah has no rings.  The cartilage that protects her trachea is what they call a "sleeve."  A sleeve, rather than rings,  means that figuring out where to place the trache was more difficult.  Her placement was also complicated because, "her anatomy just is not straight."  But they got it in, after measuring and remeasuring, and they are confident it is in the right place.  

Standard care after a trach is between five and seven days of no movement.  Those first few days are very important in the healing.  You do not want it bumping around at all, because when it is well healed, you want a nice round, smooth site- irritation can cause granuloma (an infection at the site) or otherwise slow the healing.  Since this is the airway, keeping it infection-free is critical.  After those first few days, ENT will do the first trache change.

Until the first trache change, Sarah does not just have to be sedated, she has to be mostly paralyzed.  She is on frighteningly high drips of sedation and pain medications, and she is on a paralytic drug.  This is one of those cases where the necessary thing causes predictable problems.  Medicine medicating medicine.  Because of these drugs, she cannot cough.  Her bowels are slowed significantly.  While we want her to be blissfully unaware for the next few days, we have to be careful not to over-sedate.  Her blood pressure had been low, bordering too low, because of the sedation.  Her heartrate had been high, uncomfortably, indicating pain or anxiety.  (Imagine how you would feel if you could not move!  You can not even cough!)  Both are under control now, and Sarah looks comfortable.  Tomorrow is day five.

Tomorrow it is possible that Sarah will have her first trache change.  That would mean we can begin to pull back on sedation- starting with that nasty paralytic drug.  Which in turn would likely mean progress on feeding- Sarah has been getting food, but only about half her normal .  It could mean progress for her lungs- no matter how much suctioning they do, a strong cough is more effective.  It would certainly mean that when things make her mad or upset, she would let us know.  (Currently, our only clue is the heart rate, which is affected by all kinds of other things- including some of the medicines she is on.)

But she has to be safe.  They will not change the trache if taking her off oxygen briefly is likely to cause collapse.  Sarah's lungs looked worse after the surgery than they did that morning.  And each day, until today, they were looking a little worse.  He left lung was collapsing.  Today the x-ray looks better, but she is requiring more support from the vent.  I am telling myself (and anyone else who will listen) that I think today marks real progress.  I think that she is moving mucus around and out (better x-rays) which has caused some plugs.  I think a few good coughs would do her a world of good.  But, again, no one is going to change the trache if they are not confident it can be done safely.  

There has been a lot on my mind these past few days.  Sorry for such a delayed update.  Each day that I have thought I would update, something more pressing prevented me.  It has been an eventful few days.  

Tonight, I will sleep peacefully looking at a baby who is looks beautiful and all indications are that she is comfortably sleeping peacefully herself.  

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.