The all-nighter

Tonight, Brandi and I do not sleep.  Instead, as Brandi reads 'Matilda' (her favorite book) to our sleeping Scarlett Grace, I think a thousand thoughts.

I think about the oddness of being interested, fascinated even, in the neuroscience, theory and practice, the icky and not icky medical details, memorizing the jargon, memorizing the names and faces of the doctors.  I realize that Brandi and I, in a very short period of time, have met some of smartest people in medical science.  The Heads of world famous neurosurgery, oncology, endocrinology.  I wish I could have learned more.  A part of my head is just interested, completely detached from what we're dealing with.

I think about our window view.  It's like this: Directly below us - a flat ugly roof and industrial vents - the hospital's continuation.  For those that live through disasters or tragedies, it is so easy to see the ugliness of what is happening.  Then beyond that, highway 24, it's cracked pavement wrapping around us and then speeding off in the direction of Walnut Creek.  This is the vantage of the rescuers, the heroes, the medical workers, I imagine the Red Cross, the doctors without borders...Then, apartments and houses that pepper the Oakland and Berkeley hills are visible, sparser and sparser as I look upwards.  For this view I assign the onlookers, the media images, the distance of those that put the event into horizon and perspective.  Finally, beyond the highest houses, The Fog.  It partially obscures more hills in the receding background, beautifully idealizing them into mere concept, the "hill-ness" of hill, and for this I assign the notion of tragedy itself.  Platonic, Picturesque, beautiful if sad.  The "meaning" of tragedy is here.  I wonder which vantage point is more accurate, more meaningful.

I think about what waiting for 16 hours will feel like.

I think about Scarlett's face.  I've been trying to memorize her features, her little expressions she makes, the color of her skin, the way she smells, the feel of her skin on my lips.

I'm not at all sleepy, but I am tired, because clearly I'm rambling...

Surgery Schedule

I feel obligated to keep you all updated, as you have been riding this rollercoaster with us.  Daddy is rocking Scarlett, so I have a minute to type.

Tomorrow will be an early morning.  The anesthesiologist will come in around 5 to discuss and for us to sign consent.  Scarlett will get a final bath to make sure she is squeaky clean.  They will disconnect all the EEG monitoring electrodes.

Surgery is scheduled to begin at 8am PST.  We will walk her down shortly before that to hand her off to the surgeons.  They tell us it will take a while to get started, but we will get a call once they begin, and then no longer than every two hours.  They hope to be done before midnight, but will stop then either way. 

Technically, the procedure is called a craniotomy, which means the skull will be opened.  The incision will be a large crescent over her left ear.  If she does not tolerate anesthesia well, or has too much blood loss, they will stop and not go back in for a few more days.  If they have to stop, they will leave the bone off, wrapped in the freezer, and loosely cover the opening.  This was the most sickly fascination fact of the day (and sorry for those of you who didn't want to know that, but we did).

I was sure to ask what she would look like when I see her next.  She will have another mummy head wrap and a breathing tube, as well as a drainage tube from the top of her head.

We heard a lot of information today.  Some of it was not good news...neurological symptoms are emerging.  She does not visually track anymore.  She does not move her head much, and can no longer lift it.  Her reflexes are uneven and somewhat abnormal.  My heart broke a little when they told us her optic nerves maybe damaged and they don't know how much she is seeing.  I had been worried about her eyes for days, but was told they checked out fine.  Things change fast.
...

It's been a while since I started writing this post.  Chris and I have been taking turns rocking and feeding and reading and snuggling.  She's fast asleep now, and we've hit the mark where she can't eat anything else.  The rest of the night, we hope she get some rest and we will try to do the same. I'll post updates if and when I can tomorrow, but I know the prayers and positive thoughts will be floating our way, so we thank you.

Scarlett's Week in Pictures

Scarlett has had a very eventful week.

Before coming to the hospital, we had a photo shoot with our friend Krista of Krista Lucas Photography.

This is her scarlet butterfly ornament we found on Christmas Eve.

This is the last smile she has given us; she's not in the mood.  We are so grateful to have this picture.  I hope to see another one soon.

In the hospital, she has learned to hold her bottle a little.

This morning, they marked her head with tags that will act as GPS as they operate.

Then, they brought in the EEG with camera observation to watch her brain activity and behavior in case of seizures.  it made our tiny room even more cramped.

They added all the EEG censors to her head, and wrapped it mummy-style to keep her from grabbing the wires.  It is quite the head accessory.

You can also see the new blankie and teddy that the radiology department.

She looks so peaceful, and she is.  She hasn't been fussy much at all, and that is so comforting to us.

MRI

Just a quick update, more to come later today...

MRI went well.  Scarlett was sedated and intubated, and came through the procedure easily.  She even got a fuzzy teddy bear, new crocheted blankie and a book from the radiology team.

We have had an influx of specialists and departments come to see us today.  Endocrinology, Neurology, Cardiology, all looking to establish baselines before surgery.  

She is all hooked up for monitoring, but we have a meeting with surgeons to prepare for tomorrow morning.  We'll post more as soon as all the doctors give us a few minutes peace.  :-)

Club

Being in the hospital is strange.  It is a lonely and isolating place, yet I am surrounded by other parents who know too well what we are dealing with.  I have come to the realization that we are the newest members of one of the worst clubs on Earth:  Parents with Sick Kids.  It doesn't matter what it is that the child has; it is torture for the parents.  Yet, I think there may be a special medal or level of membership reserved for those of us with the really bad stuff, the conditions that don't have a pill or injection or regiment that leads to a cure.

We are on the oncology and hematology unit, reserved only for those with horrible blood diseases and cancers.  It's a small place, but it's bustling all the time.  I have met moms of kids with sickle cell anemia, leukemia, hydrocephalus and a few other diseases.  Scarlett is not the youngest, or the sickest.  She may be the loudest...

One family, our first roommates, travel from out of state to receive care on a regular basis.  They stay overnight or for weeks, depending on the next course of treatment.  As the mom toured me around the hospital after we were admitted, she told me how she was missing her other son's birthday.  They were paying for a taxi back to the airport, so my parents drove them instead.  Her son is nearing the end of treatment and is doing well.

Our second roommate was a little boy with some kind of blood disease, I didn't know what.  he was admitted in the middle of the night.  I overheard him the next day: "Mom, I just want my normal life back.  I want to go back to the way it was.  I want to ride a roller coaster.  But I can't because my platelets are low, low, low!"  I didn't hear or see his mom's response, but I felt the pain for her.  I can only hope that Scarlett is done with this before she can talk.

Our newest roommate is 10-month old with cysts in his brain.  His condition was diagnosed in utero by ultrasound.  His mom, who may be barely 20, was given the option of termination at 5 1/2 months pregnant.  She chose to leave it to God, and her son is thriving.  She detailed all the procedures he has had since he was born...he has spent months of his short life in hospital rooms like this. Now, he may have an infection that is causing swelling around his brain.  She tries to keep him calm because, when he cries hard, pressure builds up in his brain and causes problems for his shunt.  She cried with him as they continually tried to get an IV in, and then found new strength and started telling them that no one else would stick her baby tonight, he was done.  

We swap stories like war veterans.  Diagnoses, emergency visits, IVs, surgeries are the shrapnel we have under our skin.  We all know the darkness that the others have faced.  It doesn't always look the same, but it is so dark, so haunting, it leaves traces that are hard to hide.

There is a worse club: those that have lost the battle.  I am still fighting, and I am not ready to trade in my membership yet.

Contributions

Hello to all,

So many people have asked how they can help us.  By this, we are so touched and greatly encouraged.

Initially, we set up this blog to share our story and experience, as a cathartic release for the tension and shock.  As such, we didn't really have a plan in place for how others could donate to us, though we do have a great need.

So now, we have up a donate button through PayPal for those who want to contribute.  A couple of notes about this:

We are not a non-profit, though we are working in the future to be covered under the umbrella of a non-profit.

Secondly, we want to offer you our assurances that all money will be used judiciously for Scarlett's care and comfort.  If there is any money left over that isn't needed in this way, we intend to donate it to a non-profit charity.  When we get to that point we'll certainly communicate all of this.

In just two weeks, we have surpassed 100,000 views.  Your prayers, thoughts and support are the bright spot in our days.  Thank you so much.

~Chris, Brandi and Scarlett

Signs

We did not know there was anything going on with Scarlett when we took her to her appointment.  Now that we have more information, there were a few signs that we see now and would not have known to look for.

1.  Bruise:  This is the only thing we knew about.  A small bruise on her forehead that stayed purple and red for a few weeks.  We were concerned, but had no idea what it meant.

2.  Veins:  Everyone always mentioned how her head always was very veiny.  All of the blood vessels are very visible, especially on the left side where the tumor is.  We always thought, and were even told by doctors early on, that it was just her thin, fair skin.  It is actually caused by the pressure exerted on her skull by the tumor, as is the bruising.

3.  Head control:  The week before this all began, we were at an infant massage class (highly recommended, by the way).  The nurse who led it mentioned that Scarlett was not turning her head equally, so we needed to do more tummy time exercises.  When she was born and in the early weeks, Scarlett moved her head a lot and we were always warning people when they held her that she looked wherever she wanted.  Her ability to move her head has dwindled, and now she usually turns to one side and can no longer lift her head when on her stomach.  Her head lolls to the side of the tumor because it is heavier than it should be.  A physical therapist is already consulting and has given us positions and tips to help. 

4.  Eyes:  We just started to notice yesterday that one eye is not centered anymore (good catch, Daddy!).  The surgeon looked today and said that is seems there might be some pressure on the nerves to her eyes, causing the off-center eye. 

5.  Fontanel:  The soft spot on the top of Scarlett's head was "full" at her appointment.  I had no idea what it should look or feel like, but it was enough that the first doctor noticed right away.  

We are hoping that most of this will be fixed by the release of pressure after the tumor is removed.  I try not to feel too guilty for not knowing to check these things; there was no way to know.

Hospital life is not settling well with Scarlett this time.  She is very fussy, and the nurses and doctors keep trying to give her different things to ease it.  We are trying to take turns going home to sleep, since only one of us can be comfortable in the hospital room.  It will be hard once Chris has to go back to work; luckily my family is coming to give us breaks.  Mostly, we're just anxious about what comes next, and watching for any signs of problems before surgery.