Tuesday, October 29, 2013

Sarah made it home.

She is beautiful and well and cheerful.  You would have no idea that it was such a difficult week.  Of course, to put things in perspective, my darling daughter was blowing kisses to the paramedics on the way to the hospital in the ambulance just after the fall.

Tuesday night  I stood in the doorway, with the door wide open waiting for the ambulance, breastfeeding a six month old who was not hungry because I knew she would be later and I would be gone.  I walked away from a very upset five year old who stoically fought tears in the arms of a neighbor. It was one of those difficult nights.  In retrospect, you wonder how you did it, but in the moment, you simply don't have time to consider how, you just do what you have to do.

The days in between then and now are all a bit blurry.  I remember calling my husband from the local hospital to make sure he was coming.  She was acting completely normal, so to be perfectly honest, when I walked in I felt a little silly.  I thought I was over-reacting!  The doctor even thought it would be a CT to clear us and we would be home in hours.  I remember the fear when the doctor came back after reading the CT.  Fear was all over her face.  She did not want me to call my husband to drop off money (as we had planned) she wanted to make sure he was planning to come to Children's.  She did not say so, but I got the distinct impression that she thought we should be preparing to say goodbye.

I remember rather foolishly wishing I had not broken my Kindle.  How was I supposed to rally our prayer warriors?  We needed them!

I remember walking into Children's just as they were about to sedate my darling girl.  I shooed them away.  She might need sedation, but give me a chance to calm her down.  She had ridden in the helicopter!  She was restrained because of risks to her spine!  She was tired and throwing up and alone in an ER.  She needed Mommy.  Maybe medicine too, but mommy first.

When we finally made it to the PICU, I remember how she changed.  Sarah was so clearly relieved to be there, it was visible.  Interesting.  Friends (ICU friends- it was way past visiting hours, and we were still medically precarious) came by.  Hugs and warmth and pillows.  They were ready.  They even had my breast pump in the room.  It was, I think, the second time I had the experience of an enormous weight being lifted before I was aware of it.  I had not realized how scared I was until I was not scared anymore.  I hope none of you need an ICU.  I pray that if you do, you find the same level of kind and competent care.

Blurry days, with tests and more tests.  Unfamiliar residents came in and out to reassure me.  Familiar nurses, fellows, therapists and attendings actually did reassure me.  (I have no complaints against the residents.  I just did not  know them, and they did not know me.)  The MRI did not show trauma to her spine.  Her behavior was normal.  Neuro checks every hour (later every two hours) were normal.

Friday, I was sure we would be there until Monday.  Saturday Sarah was discharged.  Hallelujah!

Sarah is doing very well.  The bleed will take some time to reabsorb. Surgery is off the table for a few weeks- and we will do the best we can to keep from being discouraged by that.  Sarah expects not to be alone, as she is rarely alone in the hospital, and never at night.  So, our bedtime routine just got more difficult, again, as it always does after a hospitalization.  The refrigerator is empty.  (You don't buy stuff when you have no idea when you'll be home, and by the time you get home all the perishable stuff has generally perished.

But life is good.  Back to our noisy normalish chaos.  Miss Sarah may even start school next week! God is good.

Friday, October 25, 2013

Yesterday was hard.

I believe in the power of intercessory prayer.

Shortly after I posted, Sarah started getting better.  And not a little better-dramatically better.  She just seemed to wake up!  She was around midnight last night, she was cheerful and alert.  She was pulling on her lines and tubes.  She was signing for Dad.  She was twisting around in her bed.  She was even blowing kisses and waving.  It was precious.  I left to refill my water bottle and when I returned, Sarah was looking at me with sleepy eyes and she raised her hand way up high in the air to wave.  I got excited and then she got excited and the nurse came in and we were all excited together.

I stayed up until about three, chatting with the nurse and playing with a very awake and cheerful Sarah.

I missed neurosurgery rounds- they round really early- but apparently the neurosurgeon was ready to send her home today!  She will absolutely not go home today, or even tomorrow.  All the teams have to be ready, but this is still excellent news as it means that neurosurgery is not considering a surgical intervention for the hematoma anymore.

We are on our way to wellness, with obstacles shrinking.

Sarah is not getting food yet.  They would like to restart, but restarting is always a bit of a gamble after as much tummy trouble as she had yesterday.  I hope and expect that she will tolerate food well, but we cannot plan on it.  Since we cannot plan on it, it has to wait until after the MRI because we cannot have her throwing up and risking aspiration during the MRI.

Which brings me to the MRI.  She is still in a collar.  We still think her spine is OK, but cannot be sure and an MRI is the best way to know for sure.  It is not previously scheduled and it is not an emergency, so we are at the end of the line which means late today- they are saying between five and seven.  So I suspect eight or nine.  The MRI is sedated.

Which brings me to... her blood work.  Sarah is a hard stick.  And it gets harder every time someone misses or loses an IV.  So, after a few particularly difficult days, even drawing blood for labs is hard.  I have asked them to hold off on more blood until she is sedated, since she is going to be sedated.  I am also going to push for better access if they think we are going to be here for more than another day or two.  You would think a little blood work would not be a big deal, but the numbers suck.  She has needed blood work and follow up blood work two or three times ever day and ever time it takes at least two or three (and sometimes more) sticks.  So we are talking about ten sticks a day which is unacceptable.  Why so much blood work?  It is not because they are forgetting things.

One of the tests is for coagulation.  Since this is not a common issue with Sarah, the numbers mean very little to me and so I do not remember them.  She needed FFP (plasma) which is a blood product.  Two hours after it was given, then rechecked and were still unhappy with the result, so they gave more FFP.  Now they have to check again, but after three (three!!!) unsuccessful and painful arterial sticks, I sent the doctor away to figure out something else.

Miss Sarah looks miserable, but darling.  She is still in the trauma collar and she still has the EEG leads all over her head wrapped in a very fancy stocking cap.  (The EEG did not show seizure activity, which is unsurprising wonderful news.)  She is on a vent.  Two IVs are in- one in each foot.  The blood pressure cuff is on, since they are still checking regularly.  Regular leads for heart & respirator rates and a pulse ox.  Sarah looks like a very serious ICU patient, but the truth is, at the moment, she is doing quite well and most of these things should be coming off soon.

Oh!  Rebecca took her bottle last night, finally.  And the letter "i" is working again- so this post was not nearly as frustrating as the last to type.

Prayer works.  Thank you.

Thursday, October 24, 2013


I will do the best I can.  My laptop is acting up.  It is inserting the letter "I" all over the place.  It seems like there could be a moral there.  In the interest of sanity, I am aiming for brevity.  Moralizing annoyance can happen another day.

Just hours after my last post, Sarah fell.  She hit her head.  For about half an hour everything seemed fine, but then she threw up.  We called for an ambulance to take her to the hospital.  The ER at Lansdowne did a CT.  At the time she was acting normally.  She was blowing kisses and arguing with everyone.  We all expected a beautiful CT and then home within a few hours.  I knew something was wrong when the previously confident and cheerful ER doctor came in looking confused and apologetic.

The CT showed a bleed.  The X-ray showed a possible spine injury.  The doctor was worried.  Worried enough to send for a helicopter to take Sarah to Children's.  Worried enough to tell me to get my husband to the hospital in a hurry.  Josh left the other two with a neighbor.  I called my Dad to meet the neighbor at my house and stay with the girls overnight.  Josh met me at the hospital and followed the helicopter to Children's.
The emergency department at Children's did a CT of her spine.  It also showed a potential spine injury, so she was put in a collar to stabilize her neck and an MRI was ordered.  They could say definitively that what they were looking at was not normal.  But they could not tell if it was normal for Sarah or if there was trauma. An MRI would show soft tissue and could answer the question.

The bleed was the top concern.  Our neurosurgery team had a look at the images and made their recommendation.  Sarah would be admitted to the PICU and she would stay for observation for a day or two.  Though the bleed was significant, there seemed to be room.  Her brain was not obviously under an pressure, so our best gauge was neurological status, and that seemed good.  She was alert.  She responded appropriately to all the nasty things that happen in these situations.  (Needles, needles and more needles: temper, tears and tantrums.)

Josh went home to be with Rebecca and Lily at 1 a.m..  I stayed with Sarah. That first night was an awful battery of tests and imaging.  So, when she was tired the next day, I was not concerned.  Night 2 she looked great!  She woke up happy.  She was signing, "Out!  Out!  Dad!"  It was incredibly cute.

But by mid-morning today, she was looking more tired.  Still, I though that it was not outside the realm of normal for her to be so tired and I did not worry.

Then we had to get her read for her MRI.  We changed her trach, her trach ties, her stabilization collar and her diaper.  She did not get mad.  In fact, she barely responded at all.  Lethargy is a neurological symptom.  Then she started throwing up- another neurological symptom.

They sent her for another CT, and though she made it down to radiology without issue, she threw up during the test.  There was no was she was stable enough to get an MRI- which is much longer and requires that she be alone- monitored but alone.  They still think the MRI will show that her spine is fine, but they need the confirmation before they can take off the collar.

This CT looked slightly better than the first.  Significant bleeding, but no obvious pressure.  Neurology and neurosurgery both want to watch and wait but they both also said we should be looking elsewhere for causes.

Neurology erred on the side of caution, and ordered an EEG.  The PICU team also ordered a slew of other tests.

Sarah has been on her vent today (usually only needs it at night) and she has needed oxygen.  She has had a fever for most of the day yesterday and overnight.  Tylenol did not break the fever, but Motrin is not an option because of the bleed.  Her blood work had a pretty normal white blood count- which should be encouraging, but isn't.  It means that infection is probably not the cause, which means we are still wondering what is and praying her brain is OK.  There are tons of other tests with various results- but the bottom line is that something wrong and we do not have a definite cause yet.

Meanwhile, Rebecca is refusing to take a bottle and Lily has to be in school ever day.  She is wound up, worried and tired.

So much for brevity.

We are peaceful, so thank you for your prayers.  It is prayer that has carried us.  We are planning to be here for the weekend, so we are planning to stay at the Ronald McDonald house.  Josh will bring the girls out here sometime after Lily gets out of school tomorrow.

Just hours before our latest episode began I wrote this in my last blog post:

"Having a panic attack was quite a blow to my courage.  Having more than one took its toll on my confidence.  I cannot do this.  And that is the point.  
"My grace is sufficient for you, for power is made perfect in weakness."  2 Corinthians 12:9  
"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7 
Everyone has a breaking point.  If we rely on ourselves, it is only a matter of time before we find ours.  I do not want to trivialize fears.  But it is our choice whether to go to God or "succomb unrestrainedly."  I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down."

True, but not easy.

Tired, I am singing to myself and to Sarah:

 I heard the voice of Jesus say,
"Come unto me and rest;
lay down, thou weary one, lay down
thy head upon my breast."
I came to Jesus as I was,
so weary, worn, and sad;
I found in him a resting place, 
and he has made me glad.

I heard the voice of Jesus say,
"Behold, I freely give
the living water; thirsty one,
stoop down and drink, and live."
I came to Jesus, and I drank
of that life-giving stream;
my thirst was quenched, my soul revived,
and now I live in him.

I heard the voice of Jesus say,
"I am this dark world's light;
look unto me, thy morn shall rise,
and all thy day be bright."
I looked to Jesus, and I found 
in him my Star, my Sun;
and in that light of life I'll walk
till traveling days are done.

Tuesday, October 22, 2013

When Rebecca was born, she came home to a very chaotic home.  Nurses and vents and supplies and supply companies and visitors... It was not peaceful.  Those mythical dreamy mornings with beautiful new baby sleeping after eating between mom and dad in the apparently unused bed could not be further from her early reality.

While my body was recovering from her delivery, I had a lot of help but also a lot of stress.  So when I was diagnosed with and treated for high blood pressure, it was no surprise, but it made me think.  I worried and worry snowballed quickly.

Normal baby worries.  Normal financial worries.  I worried about my health and Sarah's health.  I worried about breastfeeding while Sarah was in the hospital.  I worried about  money and our bills going up.  I worried about needing a car.  I worried about one normal worry after another.  I barely noticed when my worries graduated from normal.

What if I die?  Who will take care of my kids?  Who can understand the physical and emotional needs of my girls?  What if I die when I am alone with the kids?

I had a panic attack.  The first time it happened, I literally thought I was dying.  I was not thinking clearly, and I did the only thing I could think of:  I called my sister so I would not be alone.  I made her stay on the phone with me.  I needed to know that if something happened, someone would know and make sure my kids were OK.  I could not get around the fear.  It was oppressive, physically and emotionally.  

I went to the doctor and he told me I was not dying.  I did not believe him.  I thought I must have described my symptoms wrong.  I went to another doctor.

"It was anxiety."
"It did not feel like anxiety.  I felt like I was dying."
"That is what an anxiety attack feels like."

The more I worried, the less capable I felt.  This feeling is a far cry from the insensible peace I remember and wrote about when Sarah went through some of her worst times.

Some people like to talk about feelings as though they are nothing.  "But is it real?"  It is tempting.  If I can disassociate feelings and reality, I can decide how to feel.

On the other hand, some people like to immerse themselves in feelings, as though they are the only reality.  Again, that is tempting, until it is terrifying.

Worries are real.  Emotions are real.  Problems are real.  Even the physical effects of these are real.

I have read in a few places that it is not uncommon for mothers of children with special needs to worry more than normal about our mortality.  Who would willing, aware and able, step into my shoes?

That is why I thought it was worthwhile to share.  Fear may be a rational response, but fear is not rational.  I can not reason my way out of these feelings.  In retrospect, it is easy to laugh about irrational fears.  It is easy to talk about how important it is to avoid the stress snowball.  But can I point to a specific moment a specific worry, and say where I went wrong?

The phrase, "give an inch and he'll take a mile" comes to mind.

I keep coming back to this quote from Chrysostom.  It is likely that there is a better one, but this one stuck a couple years ago and has become familiar.

"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men.  For, if we ourselves do not succomb unrestrainedly to grief, he will quickly take away the portion of grief we feel; whereas, if we give way to excessive grief, he will permit us to become entirely possessed by it.  If we give thanks for it, we shall not be disheartened."  St John Chrysostom

The worry and the fear are real, but they are not unrestrainable.  I am emotionally healthy.  I am strong.  I can do this.  I want it to be true.  I can do this because I must.

Only, I can't.  Having a panic attack was quite a blow to my courage.  Having more than one took its toll on my confidence.  I cannot do this.  And that is the point.

"My grace is sufficient for you, for power is made perfect in weakness."  2 Corinthians 12:9 
"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7

Everyone has a breaking point.  If we rely on ourselves, it is only a matter of time before we find ours.  I do not want to trivialize fears.  But it is our choice whether to go to God or "succomb unrestrainedly."  I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down.