Ever since we came to the hospital for surgery in mid January, we have had a difficult timeline.   It has seemed like about every two weeks, usually just as we thought we were getting close, someone would tell us that it would be another two weeks.  Our most recent timeline was more carefully deliberate.  I had insisted on a family meeting to make achievable goals, if not a timeline, for discharge.  Being in the hospital is hard.  Being in the hospital pregnant is hard.  Being in the hospital, pregnant and with no end in sight was getting to be more than I could do.  So about a week ago (don't press me for a real date, I have been losing weeks- I only know how far along I am when I go to my OB and he reminds me.) a meeting took place.

The lead up is important.  The night before the meeting, Lily left the hospital with Josh.  She went up to the doctor on her way out.  "Sarah needs to go home."  

Waffling a little, "Well, she needs to get better and..."

"No.  Now."

She was not angry.  But she was forceful.  My goal for the meeting was roughly the same.  I wanted to demand that she send us home.  I wanted to be clear and forceful, but not disrespectful.  She is a good doctor, just moving more conservatively than I felt was medically necessary.  I also wanted it to be 100% clear that if my choice was to stay in the hospital for three more weeks or go home and make the same progress in six months, I wanted six months.  I am OK with going home on a vent.  Emotional needs are not less important than medical ones, and we need to be together as a family.  

At the meeting, everyone put all their cards on the table and the social worker played the role of counselor.  She made sure everyone was being heard.  The doctor basically said that we had too many balls in the air to go home.  The vent settings and wean were the biggest, but not the only.  We are still weaning sedation.  She is willing to send Sarah home weaning one sedation medication slowly, but not two and to send her home on a sedation wean, she wanted to have started the wean in the hospital and seen no signs of withdrawal.  Withdrawal is awful.  (I have a new found respect for any addicts dropping their habits, having watched the pain and frustration of withdrawal- and this in a very controlled way where we could give an extra dose when needed.)  

The doctor also really wanted to meet her respiratory goal for Sarah in the hospital, which is no ventilator support.  She said, "I went home and thought very seriously about this. "  (Good job Lily!!)  "I think that the second week of April is a good estimate."

She did not say two weeks!  It was over three.  

We did go back and forth a bit.  Is there wiggle room?  (No.)  Can we wean at home?  (No.)  

I told her that I could not disassociate Sarah's medical wellbeing from my family's.  I told her that if she did not get us home in a hurry I was going to deliver a baby in her (children's rehab) hospital.  I told her that I thought we could wean more aggressively- and it was not just my opinion, but the opinion of most of the respiratory therapists that had worked with Sarah.  I did not cry.  

Josh has been working twelve hour days, and due to a scheduling nightmare, he had seven shifts in a row.  Palm Sunday fell in the middle of a particularly rough week for us.  On Monday, Lily had not been sleeping because she missed me.  I had not been sleeping because Sarah's monitors were going off all night- although she was fine.  I found out that what I thought was going to be six days, was going to be seven.  The difference between six and seven may not sound like much, but it is.  

So, I decided to leave Sarah alone in the hospital for a night. I knew it would be hard, but I did not know what else to do.  

A friend had sent a gift: a relic of the true cross.  

I found some string and I tied the relic and the medals to Sarah's bed, along with a cross made from Sunday's palm leaf. I said a prayer and I left.  Lily and I slept well.  

The next day, I found out that Sarah had had a terrible night, as I had expected. She had been inconsolable until she fell asleep from exhaustion, at which point she had some apnic events, presumably because she was so tired. It might have been discouraging, but for the good news: the good news was that in spite of it, the doctor moved up her discharge date. We went from a vague hope of the second week in April, assuming no events or setbacks, to April fifth.  The events are unrelated as far as I can tell.  The doctor decided she could speed up the sedation wean, slightly, and the respiratory therapists had been advocating for a more aggressive respiratory wean.  Sarah will be "medically ready" on April fifth.

We need prayers.  Sarah has all kinds of new home care needs.  We will have home nursing and a whole bunch of new equipment.  We are taking home a ventilator and everything that comes with that.  (A lot!!)  Trache supplies.  A new chair.  A stander.  A bath chair.  A suit which is made to help support her core.  Braces for her legs and feet to support her in the stander.  We need more insurance.  So, we have been applying for the various programs.  I will not get into the nitty gritty, in part because I cannot understand it all, but it has been a confusing and frustrating battle getting the coverage she needs.  We were denied for the program we expected to get into, and approved for a program which we thought would automatically deny us- but the approval is temporary.  If we are still here after the fifth, it is far more likely to be paperwork than medical needs holding us up.  The case manager is good, and she is working hard.  We are very hopeful.  

We will not be home on Easter Sunday.  But we should be home for Divine Mercy Sunday!


Sarah is flourishing.  Despite my frantic worries, Sarah is doing really, really well.  Under the care of some amazing therapists, she is learning more and more every day, and it delights her.  She has been a wonderfully happy kid, working ever so hard.  She amazes me.  She has charmed the people who worked with her here.

The paperwork terrifies me.  The newest (still not born- due early May) baby is growing so fast .  We still don't know what we are going to do about a car for three children plus equipment for Sarah.  These are the worries that keep me up.  But to keep it in perspective: All three of my girls are remarkably healthy.  We will be home soon.

Thank you for praying with and for us.

It has been a very difficult few weeks.  There is just no way around it.  I actually did write a post last week, but it was so angry that I decided it would not be appropriate to post it publicly, at least not without first taking my complaints to the hospital administration.  Suffice it to say that I felt that Sarah was not getting what she needed and no one was listening to me.

I having been having a hard time.  As our new baby's due date fast approaches, it is getting hard to sleep.  The chairs are not comfortable, no matter how many pillows I get.  I am worrying.  The alarms and the people and the noise and the light- it is really hard to sleep here.  It has been hard for Josh, who wants to make sure all his girls are OK, but he still has to go to work.  It has been hard for Lily, who cannot understand why it is taking so long to go home this time.  And since we are all struggling, it is hard to stay cheerful.

Yesterday was Palm Sunday.  We went to Mass at the Shrine of the Immaculate Conception.  We went to the Mass with a full choir.  I love the music at that Mass.  They always do some hymns, with choir and organ.  They usually do some enchanting polyphony.  Yesterday, as we raised our palm branches high, they sang a very forceful Hallelujah, which I had never heard before, but loved.  During the presentation of the gifts we sang "Oh Sacred Head surrounded."  It is so familiar, it is easy to breeze through the words and forget to pray, but I was awakened by the second verse we sang.

"In this your bitter passion, Good Shepherd, think of me.  With your most sweet compassion, unworthy, though I be: Beneath your cross abiding forever I would rest.  In your dear love confiding, and with your presence blessed."

I just do not associate the image of the Good Shepherd with the cross.  It is an easy association, and one that our new pope makes easier.  The people who need the mercy of the cross are the ones who are lost and broken.

"If a man has a hundred sheep and one of them goes astray, will he not leave the ninety-nine in the hills and go in search of the stray?"  Matthew 18:12

Our Lord does not leave us to wander in vain hope that we will find our way back.

Cheer is not the most important thing.  It is helpful in healing, but the reason this all felt so discouraging was that Sarah does not seem to need healing.  She is well.  Well is relative.  She is rebuilding strength which she lost during an extended hospitalization.  We, all of us, thought that she could do this better at home.  We were not cheerful.

Cheer is not the most important, but hope is.  We were not losing hope, when we thought about it, we were just thinking about it less.  When things were particularly bad, we would pray.  But the hour to hour involved, at least on my part, more complaining than prayer, and thus more frustration than hope.

Can I find rest in the cross?  Can Holy Week be a pilgrimage of faith?  Will I be ready for Easter, or will I still be feeling sorry for myself and broken?

"Like a shepherd he feeds his flock;
in his arms he gathers the lambs,
Carrying them in his bosom,
leading the ewes with care."  Isaiah 40:11

I will be ready if I let Him make me ready.

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.