A smile

A lot of things happened today.  We spoke with one of the lead surgeons about Scarlett's brain with yesterday's MRI scan, we took out her intubation tube from MRI and put on a CPAP machine to keep her lungs from collapsing, we started feeding her mama's milk again through a tube, we were moved to another room, and some other things.

But the most important thing that happened to me today is that Scarlett, swollen and all, smiled at me while I was talking to her.

Found

I had been hoping that, with this blog reaching so far, we might find one other family dealing with this incredible rare, incredibly scary tumor.  Yesterday, they found us.

Riley
Abby

I think I may have let myself dream again last night.

Today

Not much new information today.  We know she is having frequent small seizures in the right hemisphere, which is the opposite side from the tumor.  While this is not unexpected, it is not easy to hear.  We can't see signs of the seizures, though the doctors sometimes notice some staring or stiffness that they attribute to them.  She is now on high doses of phenobarbitol to reduce the seizures, so hopefully that will make some difference.  

The neurologist, who we have learned is the most clinical and least gentle of the doctors we have talked to, mentioned she may have had a stroke.  We won't know until the MRI this afternoon.  I'm trying not to worry about it yet, but I'm failing.

As Chris mentioned, there is also a large bubble of air in the now-empty space in her head that was once tumor.  They showed us the CT scan, and it basically looks like someone used a spoon to scoop out the majority of her brain.  Air doesn't seem to be such an unlikely occurrence, and as difficult as it may seem, I am not worried about getting rid of it now since they are going to open her up and let more in next week anyway.  It's funny how different my threshold for "serious medical issues" is right now.  Air bubble in brain?  Meds can stop her breathing?  Seizures?  Sounds good, whatever has to happen to get to the next step.

I keep trying to remember that what we see right now is pretty meaningless.  Nothing is certain, and there is no way to know what the long-term effects may be.  Paralysis today may be resolved tomorrow.  Swelling is always changing.  Nothing we see today means anything for her future.

My biggest concern, and the most difficult, is pain management.  How do you know when a 2 month old hurts?  She can't say "Ouch!", she can't point to where it hurts.  She can't even cry right now.  I slept next to her all night, and it was pretty quiet.  When I woke at some point, I heard her whining a little. I asked the nurse, and she thought it was just snoring...I didn't believe her, but what do I know?  Her heartrate has been high, understandably, so I just watched it closely.  A few hours later, the next nurse came in and noticed all kinds of things were wrong - a stick-on heart monitor was yanking, her catheter was pulling and an IV in her foot was leaking.  She was hurting, and the new nurse couldn't believe she hadn't been given pain medication yet.  It was devastating.  Now I am learning what to look for, what I can fix myself and what the nurse can do to help.  She should not have to feel pain, and I am going to watch for it as best I can.

For those who have asked, we have a PO Box now.

Chris, Brandi and Scarlett

P.O. Box 1573

Newark, CA 94560

ICU and Surgery Ahead

Inside the ICU there is no cell phone usage, no WiFi usage, and no stopping.  Things beep, respirate, alarm.  Code Blues are called, people run.  Still, there is an eerie calm.  Nurses seem to lope from station to station, all too used to this.  Tonight Brandi sleeps in the ICU, and I've gone home (tomorrow we'll switch).  Only one is allowed in the room overnight.

The day began as smoothly as any day might that happened to sit between two brain surgeries.  Scarlett looked better; her swelling had dropped and we were able to catch little glimmers of her eyelashes poking through.  She had three arterial lines, an intubation tube to breathe, and a plethora of other tubes and monitors that I don't want to gross you out with.  As the day wore on, we took turns sitting outside to field emails and phone calls, and inside we watched her right eye beginning to peek open.

Our surgeon came in to let us know his plans: an MRI tomorrow to provide a new geographic guide to a surgery on Monday or Tuesday.  This will be the final surgery with any luck.  "Monday or Tuesday" - the sort of casual time frame I used to assign to paying bills.  Brandi and I would much prefer something like "Tuesday, 9:35 AM," but we can't fight every fight these days...

The afternoon became anxious.  Scarlett was having "sub-clinical" seizures, a common thing post-brain surgery, where the brain neurons seize in a minimal way, without outward bodily signs.  These seizures began to increase to 4-5 per hour, and so her anti-seizure medication was upped.  This much anti-seizure medication presents a risk to her stopping breathing, but, as it was explained to us, that's not really such a big deal given where we were.  Bizarre, but true, and so Brandi and I agreed.

Also, we all had noticed her left arm and hand weren't moving a lot.  So it was in the afternoon that all of this added up to a call for an immediate CT scan.  Brandi and I were ushered aside, and we helds hands and watched a mobile CT scan machine, which looked maybe like a time machine, roll in.  Scarlett was picked up, and I remember hoping they didn't accidentally rip any of the delicate lines out of her skin.  They placed her in the CT machine, and after 20 minutes of scanning, the circular machine was rolled away, and we were allowed to comfort her again.

We can't really pick her up.  I wanted to, but there's just no way to hold her without breaking something attached to her.  So all day we'd placed our fingers in her right hand, which was gripping, and her little right foot, which can also grip with her long slender toes.  I placed my hand on her belly, to let her know I was there, and then both of her eyes began to open!  Brandi and I were so proud.

We waited for an hour, speculating what might explain Scarlett's lack of movement.  We both hoped it wasn't neurological, and we had plenty of reasons to believe it.  Her left side was more swollen, and she had more lines and boards restricting that side.  Surely this could explain it, right?

One of the neurosurgery team came in to tell us the news.  It was not what he had feared: brain bleeding.  What he did find was air - a giant air bubble composed of nitrogen.  Still no explanation for the lack of mobility, but that issue was tabled because there was no emergency course of action that needed to be taken on it.  The solution for the air bubble?  Tilt the head so that it came in contact with the brain, and increase the oxygen supply.  With that, our neurosurgeon team member explained, the vessels in the head would simply carry it away with the oxygen into the blood stream, and the bubble would disappear.

We looked at our daughter's CT scan, a gaping hole filling with half liquid, half nitrogen, and shrugged in agreement.  Sounds good, we guess.

Then, with the crisis apparently over, we settled in and I helped her make a cozy folding bed.  She has a t.v. there, some mindlessness of which I'm glad for.  I left hoping nothing else would happen while I'm gone.

Our nurse was very nice, very casual.  They all were like this.  The nurses and doctors moved from machine to clipboard to computer, as nonchalant as they could be.  They joked with each other and calmly carried out life saving scans and checks as though they were doing a load of laundry.  Just another day in the ICU for them.  Brandi and I meanwhile check another day off before the final surgery that can set us up to remove this thing.  If we can make that far, then maybe we can make it through Chemo.  If we can do that, then maybe we can win this thing.

Oh Scarlett, keep fighting baby.

.

The Day After

WOW!  You guys are amazing and so wonderful to have as a support.  We had over 100,000 views yesterday as people were checking in on Scarlett's surgery.  That is UNBELIEVABLE.

Last night, we saw her in PICU and she was doing very well.  She was very swollen and pale, but looked okay overall.  She has tons of lines in and out - PICC in upper arm, arterial blood pressure on foot, IV on other foot, pulse ox on hand, blood pressure cuff, catheter, respirator in her mouth, and - most absurd - a drain coming out of her head for cerebrospinal fluid.  She is also getting blood to continue replacing what was lost in surgery.  Her head is bandaged, but it mostly looks like a beanie hat.  However, I did see her little head today and the difference is amazing; the dark, bulging veins are gone, the bruising is lighter and her biopsy site, which was bulging off the side of her head, is now flat.  The pressure is released, and that was the most critical immediate need.

Despite the way she looks, she is definitely still herself in there.  She is kicking her least-restrained foot, and her toes curl around our fingers when we touch her.  She tightens her little hands around our fingers and tries to open her eyes every once in a while.  Her little heart rate skyrockets every time the nurses move her around; this is exactly what she did before, except it was accompanied by screaming.  That's my girl!

Since she was sedated and asleep, we decided it was best to go home and rest and shower last night while we had a chance.  While we were there, we got to see some of the precious and wonderful gifts we have received.  While Scarlett was in surgery, she got a flower arrangement that was a yellow smiley face.  We saw it being delivered when we went for lunch, thought it was so cute, and then were shocked to see it was for her!  She also received a lovely pink fleece prayer shawl blankie from a church in Alabama.  At home, we had a beanie knit from home-spun angora - can't wait to put it on instead of the bandages.  Then, there was a whole basket of goodies from my coworker Devon - magazines, books, chocolate, popcorn, a DVD...we're set for a day at least!  :-)

Once we oohed and aahed over everything, I had a glass of wine...and nearly passed out, I was so tired.  The constant rush of adrenaline I have been running on finally ceased for a short time and I slept well. 

Now we're learning the ropes in PICU.  This is much different than when she was in PICU before, since she was still "normal" then.  Then, she was just having vitals monitored, blood work and tests.  Now, she is one of the more serious cases in the unit.  This unit is secured; we have to buzz to get in.  Everyone must handwash and sanitize at the door.  It's a very high-risk unit, so they are extremely cautious.  She has her own nurse who is constantly draining, cleaning, adjusting, injecting and generally puttering around her bed.  There is no food, no drinks, no phones, no computers allowed in PICU.  This poses a serious lifestyle change for Chris and I, even compared to what we have done in the hospital the last few weeks.  We're taking turns trying to respond to the tons of messages we receive, calling family and remembering to eat while the other sits with Scarlett.  We are expecting to be in PICU for at least two more weeks, so we're trying to find ways to get comfortable and try to make the best of it.

Today, she is back on EEG to monitor for seizures.  Fingers crossed on that one; the doctors explained that seizures are likely and common in post-surgical brains. She will have another MRI tomorrow as a "stealth" for the next surgery, which is being scheduled for Monday or Tuesday.  It's another long day of nervous waiting, but we know she is handling it well.

News

Ok everyone....breathe.

It is 8:55pm PST.  Scarlett is out of surgery. She is doing well and is stable.  We saw her as they wheeled her to PICU and she is moving all 4 limbs and coming out of sedation well.  Hooray!!!!!

However, we're not done.  The surgeon removed 70-80% of the tumor.  He felt this was somewhat easily and successfully removed and he could have continued, but he was concerned about her blood loss.  She lost twice her full volume of blood (her entire blood volume is equivalent to a can of soda).  She was successfully transfused and is stable, but he wanted to be conservative, so she will go back into surgery next week to remove the remaining tumor.

We will see her again shortly.  I am so proud of my feisty little girl!!!!  Thank you to everyone for keeping us raised up; we're not out of the woods, but we are feeling confidant that we made the right decision for now.

Update

We just got our first update from the operating room.  All IVs and lines are in, she is intubated and surgery has finally begun.  It has been 3 hours since we handed her off to the nurse.

We tried to absorb every minute with her this morning.  We chose to have the nurses give her morphine through the night to help ease her and let her sleep, so she was very groggy and sedated all morning.  I slept a few hours, but Chris did not.  At 5am, the nurse had us bathe her one last time to make sure she was clean.  A while later, the EEG was removed, so we got to feel her fuzzy hair one last time before it gets shaved off.  

We sat together at the window and watched the sun come up.  When it was finally time, I got to hold her as we walked down to surgery.  The nurse there wrapped Scarlett and I in a warm blanket as we discussed the procedure with the nurse and anesthesiologist.  I was so proud of myself for not crying when I had to hand her to the nurse for the last time.

We ate breakfast and packed up our room.  She has a bed in the PICU now for after surgery.  It will be a very intense few days as she recovers and we are very limited in when and how we can visit.  

We met briefly with the neurologist this morning.  When we were waiting for surgery, the nurse told us the EEG had been clear, no seizures.  Unfortunately, that was not true.  The overnight EEG showed that she is having a few very short, very mild seizures around the tumor.  We can't see any signs of them, and they are mostly in her sleep, though the nurse did catch one.  I can't believe we didn't know this was happening.  We won't know what kind of damage or effects this has had for a while, so it is just more information to add to her file.

I'll try to keep you updated as best I can.  We are a bit homeless now, with no room to settle in (PICU will be just a curtained section for one of us, no room, no table, no phones, no computer allowed).  We are spending the day in the waiting room that had the most chairs.  It's hot and noisy, but Chris is sleeping, my mom is here and I can write and read....that reminds me:  I have been reading The Help by Kathryn Stockett.  It is very good and has kept me quite engaged, despite the frequent distractions.  Highly recommended.

More to come.  Please pray.