Now what?

A lot has happened since my last post!  Emma went home from the hospital on Saturday.  I'm so tired and confused about my days that today (Monday), I told someone she went home on Friday.  I need to get back on a schedule.

Anyway, Emma was sleeping, eating, drinking, peeing, and pooping well...so off she went on Saturday afternoon.  My only hesitation in sending her home was coming off of the magical med for nerve pain, something you can't go home with.  Instead, she went home with Loritab, a medicine I sincerely despise.  She felt decent on Saturday but not great.  We had a hard time getting her to take the Loritab, but we finally figured something out.

On Sunday, she acted like she felt much better, but she was still a little weak, even after 12 hours of sleep.  The bad news about Sunday was that two incisions were compromised: poop got in her lower back incision, all the way up to the weakest point in the incision.  This happened exactly one week after Emma was born, too, and it went completely downhill from there.  Later in the evening, I noticed something that looked like marker on her fingers...it was dried blood.  She had scratched through the incision on the back of her head.  Her incisions are covered in this stuff called Dermabond.  It looks like a thick coat of clear nail polish that eventually peels off.  It's heavy duty, though - if you try to pull it off, it will pull hair out by the follicle.  She has been constantly trying to scratch her head/neck for days because the Dermabond is starting to peel off, and it itches.  We can't take our eyes off of her for one little second!

Today, Monday - much better!  I didn't think it would be that way when she woke up, though - wow, what a mood she was in.  She asked me where Daddy was, and when I told her that he was work, she cried and said, "Nooooo!"  And a few seconds later, "What are we going to do about Daddy?"  Then after breakfast, she said, "Can Daddy bring me a biscuit?"  She sure loves that man.  And so far, the incisions look ok, but we're on high alert for infection.

Puzzles, crafts, coloring, and Disney Junior DVR has been our whole life lately.  Our biggest challenge is definitely keeping her hands occupied.  Think about it - if you have an itch, you scratch it.  Five minutes later, if someone asks if you scratched an itch, do you remember?  Probably not.  This is what it has become with Emma: an unconscious response which could result in something pretty dangerous.  So we are pulling out all the entertainment stops, especially with puzzles.  This child could do jigsaw puzzles all day, every day...for real.

She took a break from the puzzles, coloring, etc., to play with her Doc McStuffins dolls...and this isn't even all of them.

I feel like we're going through this whole experience in stages: (1) preparing for the "big day;" (2) making it through surgery day; (3) enduring sedation and getting her meds right; (4) getting Emma weaned off the sedation meds & difficulty breathing from extubation; and (5) getting the incisions healed.  That last stage is the longest, and so much hinges on it: bathing, wearing pants, brushing hair, washing hair, crawling around to play, going to therapy, going back to school, diaper changes...the list goes on and on.  And this baby I'm carrying around isn't getting any smaller.  I'm just ready to get back to Emma being able to do things on her own...and HER normal level of independence is lower than other kids her age in the first place.

The first thing I want you to do...

...is look at the picture from my last blog post.  Since some of you read my blog through a feed, do this: click on this link to read the blog:  http://oneyoungtwoyoungs.blogspot.com/

Look at the last picture of a puffy Emma.  And now look at this one:

Quite a difference, huh?

On Thursday, Emma had a decent day.  On Wednesday night, she slept relatively well.  She attempted some eggs for breakfast, and they came back up again, along with some mucus that had been hanging out in her throat.  She puked on her beloved Bun, too, which actually didn't upset her.  The sweet nurses in the PICU sent Bun down to the laundry, and he came back up through the hospital's tube system smelling like dryer sheets.  They just don't get any better than the sweet nurses here.

Anyway, Emma was acting very sleepy during the morning, wasn't talking much, and was still shaky from the meds.  She just seemed stuck.  She slept for a little while in the afternoon, which we hoped would make a difference...and I guess it did a little.  She snacked on a few little things but refused to drink anything, so they continued giving her IV fluids for the day.  She talked just a little bit, and her vocal cords sounded stronger.

Fast forward to Friday, and we saw a big difference...although the day didn't start out looking so good.  Emma slept for 11 hours.  You'd think a well-rested child would be a feeling-good child.  Nope, she woke up cranky and stayed that way for quite a few hours.  She got to take a wagon ride to the pediatric floor to see the fish, and she really could have cared less.  She wasn't interested in doing one of the things she loves the most in this world: stickers.  We managed to give her a delicate sponge bath and "wash" her hair to the best of our ability.  I put purple glitter nail polish on her fingers...still not a happy little girl, just kind of blah.  She kept scratching her head behind her ears, and one of the nurses had the wonderful thought to give her a non-narcotic pain med specifically for nerve pain.  At about the same time she got the medication, she ate a good lunch, and voila!  30 minutes later, she was almost completely back to her old self.  She did puzzles, was talking and laughing, and did crafts.  Then she got sleepy...she slept for an hour and 15 minutes, and then something really big happened.

We got moved.

Emma was moved to the post-op floor, which is a step above the PICU but isn't the plain old pediatric floor.  This is something fairly new at the children's hospital, and I'm thankful that it's here.  We still have our own room, which is even tinier than the one in the PICU, but we have our own bathroom!!!  That was the only good thing about the act of moving - Emma was still asleep when they started rolling the bed down the hall.  We got all the way to our room and instead of moving Emma's bed into the room, they moved Emma into a new bed, which of course woke her up.  So then we started all over again with a bad mood, achy neck, and a little bit of hunger.  She was lethargic and quiet until she once again got her meds and a little bit of dinner.  It's a very clear cycle: food and medicine make her happy.  Sleep and sore neck do not.

We are seeing glimpses of our little girl coming back, and she is definitely making progress.  I just hope that she isn't so dependent on the new pain meds that we still have to wait a few days to go home.

It's amazing how a little smile, chuckle, or cutting her eyes at me with a smirk on her face is now so treasured as an incredible blessing.  All of you with children, remember that, please.  I'm not trying to be overly dramatic here, but even a little surgery has made me realize how incredible yet delicate those moments are.

I'm entitled to my opinion

Most of our family members who have been here for every day of this whole ordeal probably each had a different "step" that they dreaded the most - waiting through the surgery, what Troup had to say about the surgery, the long wait while Emma was sedated, etc.  I, personally, wasn't as scared on the day of the surgery.  I was probably the least excited when Troup told us everything went well.  That's not to say I wasn't excited, just the LEAST excited of our family members.  I dreaded today the most.

And I was RIGHT, I tell you, I was RIGHT!  But that's my opinion.  Russell dreaded this day the least.  He was downright giddy at the prospect of waking up his baby girl.

Emma was extubated at 10:30 am, and the next 4 to 5 hours were quite unpleasant.  She didn't breathe on her own for a little bit at first, and they had to bag her to give her oxygen.  I watched her oxygen level drop all the way to 0%, and I saw a glimpse of a blue baby between the nurses, respiratory therapist, and my brave husband standing in front of me.  Once she finally started breathing on her own, she was very upset and trying to cry.

You could hear all kinds of rattling in her throat and, I assume, her chest.  I so badly wanted to clear her throat FOR her, and that has lasted all day.  She's still fighting the junk that accumulated over the last 5 days and got irritated during extubation.  Her little face and eyes have remained swollen, and I could tell that she knew her eyes were kind of weird.

Those first 4 to 5 hours were basically filled with Emma wavering between crying and just being dissatisfied with her nasal cannula.  Because she has sleep apnea, they didn't just give her a little oxygen support; it was a steady, full-blast of oxygenated air in her nose.  And the probes in her nose wound up crooked to the left a little.  And one side of tubing was pushing into her face.  And both sides of tubing were taped down to her face.  I do not say this to complain about the nurses or respiratory therapist - they're wonderful...it's just an uncomfortable situation to be in, especially when you don't even understand it.  As Emma started feeling better, she started asking every person that came in the room, "Can you take this off?" in her teeny, tiny, scratchy voice.  The doctor agreed, under the condition that if she didn't keep her oxygen up on her own, they would put a less pressurized cannula back in.  The cannula came out, and we haven't looked back :)

There are still some things to deal with - like how in the world she's going to handle her bipap mask when she goes to sleep, how we're going to protect that incision at the base of her head when the headgear goes on, and also when/if she's going to poop enough.  This is actually a pretty big deal.  The bigger her stomach is with backed up poo and the air bubble hanging out in there, the less room there is for her lungs to fully expand.  Her lungs have been compromised for 5 straight days, so they need all the help they can get now.

After those first few really stressful hours, things have been much better.  She has been asking what things are in the room, if there are stickers in the room, who people are, etc.  She has introduced Bun to a few people (Bun is her well-worn bunny), and she started smiling.  Here's one of the early smiles, and, bless her heart, her puffy cheeks and eyelids just cause her eyes to close when she smiles.

The build-up

Emma has been great the last 2 days on her sedation meds.  There are a few other symptoms that are side effects of being prone, on a ventilator, etc., but keeping her still is the biggest accomplishment (in my opinion, I guess).

Dr. Troup came by today and said that it was fine with him to extubate today (Tuesday) or tomorrow.  After he said that, the attending PICU doctor decided to go ahead and change the sedation meds to propofol to allow her to start waking up.  We have been watching for movement all day, but she didn't budge.  Since Troup was ok with extubating, that also meant he was ok to flip her on her back.  So Emma has been on her back since around 2ish this afternoon, and her swelling has already gone down some.  I hope it will go down A LOT before they extubate so that she can open her eyes as wide as possible.  As of this morning, both eyes were almost swollen completely shut.

At about 8:00 this evening, the attending PICU doctor wanted to drop her propofol dosage in HALF to get her moving some.  That lasted for about 30 minutes, and then it was every man for himself.  Russell and I both had to grab an arm, she was moving her tongue around trying to figure out what was in her mouth, and she opened her eyes a couple times.  They bumped her steady propofol drip back up to 75% of what it originally was and then gave her a bolus (a quick hit).  About 10 minutes later, she was back asleep again.  I, of course, was a stressball for about 10 minutes...Russell was grinning from ear to ear.  He is so excited to start this process of waking her up that I think he secretly wished they would just go ahead and do it now.  He also knows that he is Daddy's girl and that he is the only one she will want when she awakens.  I am 100% ok with that - no jealousy here, just joy that he can provide her with that much happiness.  He just said to me, with a huge smile, "I think she'll do great tomorrow.  I'll be right there to snatch her up," as he motioned with a big bear hug.  I do love this man.

18 minutes after that bolus, she started squirming again, so they gave her another one.  She can have them every 10 minutes.  The goal here is to determine how much of the steady propofol drip she needs to be on to be still enough, but also how much to give her so that when it stops, she'll wake up quickly.

Here's a picture of Emma now that she's on her back.  Her face is very swollen, and her bangs have gone mohawk/bouffant on her.  To get an idea of how swollen she is, I'm including a normal Emma picture.  I can't wait to see how her face looks in the morning after being on her back for about 15 hours.

And here's Emma's home away from home:

I hesitated to put a picture of Emma all swollen and tubes everywhere (and you can't even see the central IV, the blood pressure cuff, or the oxygen monitor), so I asked Russell.  I said, "Do you think it's too graphic?"  His reply?  "No, it's real."

Good response, my love.  But you need to be glad I didn't ask him that question over the last few days or you might have gotten a good glimpse of some incisions.

We are loved

Let me just give you a breakdown of visitors we've had.  There's no way I can count the number of text messages, emails, or FB comments, but the visitor number is just as impressive.

Friday, January 10: 25
Saturday, January 11: 7
Sunday, January 12: 14

We are so incredibly blessed to have so many people care so much about us and about sweet Emma.

Last night (Sunday night), Emma hit a fever, and they didn't get her meds sorted out until around 2:30 or 3 am.  We now are asking that no one come to visit, in the interest of keeping Emma herself directly healthy (obvy), but also to keep us healthy so that we can be there for her.  I'm sure my hands will start cracking and drying up soon from the excessive hand washing and antibacterial use.  In addition, we need to keep her room as quiet and peaceful as possible to prevent her from being disturbed by noise, especially voices.

We feel strengthened by so many people, whether they physically visit or not, because we know that Emma is surrounded by prayer.  Her tiny little room will only hold so many people anyway! Since there now is basically a noise, bright light, and touching ban in her room, it's a different atmosphere.  However, I honestly enjoy the quiet.  Things can get a little chaotic, and the silence is comforting - it allows me time to put my feet up ('cause my ankles are not getting any smaller these days), read a magazine, check my email, and just look at my precious one, knowing that every minute of that quiet solitude is time that I'm resting for the new baby and time that God is using to heal our first baby.

It has just occurred to me that many of you have never seen The Great Troup, and those of you have seen him in person are surprised.  He looks like your average guy, NOT your average neurosurgeon (as nurses have told us over the years, off the record).  He likes junk food, football (played in high school), pranks, practical jokes, and fireworks.  He tells stories about his kids and his vacations.  And he's awesome.  Here's the picture of him from the Children's Hospital website:

And that's wonderful Nurse Nikki with him - she gave Emma her first tub bath when she was in the PICU a few years ago.  Take a look:

And Nikki invented this wonderful contraption to allow Emma to lie on her side, hug something, and still have her binky:

But this is the one that cracks me up.  It's from the hospital's general physician's website.  I can't swear to it, but I don't think I've ever seen Troup in a white coat, and I'm pretty sure his skin was crawling when he had to take this picture in a white coat.  He doesn't wear white coats.  He has tie dyed lab coats, thank you very much.

And PS - he popped in Saturday AND Sunday to check on us, and he actually didn't have to.  This part of Emma's recovery in the PICU isn't really something he HAS to check on over the weekend.

Ugh, recovery

Don't get me wrong - I was SO pleased that Emma's surgery went well.  But it actually wasn't that stressful for me.  Recovery is a different story, which I kind of anticipated.

Emma has been in the PICU since Friday night around 9.  It is now Sunday night/Monday morning at 12:30 am, so 51 hours later, here's what we've been through:

Baby girl has been intubated twice, and they suspect that it may have stirred up some tissues and caused some bleeding.  She has been lying on alternating sides of her face, so that dried blood has combined with a good bit of drainage to create some nasty stuff that is leaking out of her nose and her mouth in very large amounts.  I'll just leave it at that.

Emma started off on the sedative propofol.  Sound familiar?  That's because it killed Michael Jackson.  So for a few reasons, children aren't allowed to stay on propofol for a long time (I can't remember the exact time period.).  Emma did ok on the propofol - she would get a little wiggly, so they would add another dose and voila!  Back to calm, peaceful sleep.

All that changed this afternoon.  Emma came off the propofol and was put on a combination of 2 other sedatives/pain killers (versed and fentanyl - fentanyl is 100 times more potent than morphine...file this away for a second).  Not long after, Emma started squirming.  We would get the nurse, she would alternate giving doses of the 2 meds, and Emma would calm back down.  Repeat this 4, 5, 6 times...whatever it was.  This is basically a game to figure out the best dosage and timing for Emma, and we were warned that it would be tough.

Then things got real.  Emma REALLY started moving and stirring up her secretions VERY quickly.  So one second, she's still, and the next second her oxygen monitor is going off because she isn't breathing through the secretions.  The nurse and respiratory therapist then have to immediately give her a dose of medicine AND suction out the breathing tube in her mouth.  Of course, suctioning draws the breath out of her, too, so she's not getting oxygen in THAT process, either.  It's very scary and very stressful.

This happened a few times, and it got to the point where they decided to put Emma on a low dose of a paralysis drug.  Therefore, she can't move as much and disturb her secretions as much, and they'll just suction her out on a regular basis.  Girlfriend is really resisting these powerful drugs and is trying not to take this whole hospitalization lying down - literally.  So here's what we're currently dealing with:

Because Emma is now somewhat paralyzed, when she wakes up a little from the sedation, she's moving a tiny bit, and her heart rate shoots up.  She hears one of us talk, even a tiny whisper, and her heart rate shoots up.  She hears me close the footrest on the recliner, and her heart shoots up.  What this means is that she's awake, she's trying to move and can't, the breathing tube is lodged in her throat, and she's angry.  When she's angry, her heart rate goes up.  They decided to give her both sedatives at the same time as opposed to alternating, which seems to have helped, but hasn't totally solved our problem.  So frustrating.  Again, she's putting up a fight against some pretty powerful drugs.

The next step is to keep the room as dark and quiet as possible.  Think old-school librarian, shut-your-mouth quiet.  Whispers are waking this child up.  They are giving her doses every 30 minutes in the hopes that she will eventually settle into a deep sleep.  If we can't achieve this, then she will have to be on a steady drip and/or higher PRN doses, which creates problems when they try to take Emma off of the drugs in preparation for waking up and extubating.  These drugs won't exactly make Emma addicted, but she won't feel well at all when she wakes up.

Speaking of waking up, Troup told us today that they will probably wake her up Tuesday or Wednesday.  Russell and I are assuming it will be Wednesday, but we'll see.  The process to wake her up is to take her off of these 2 sedatives, put her back on the propofol long enough to let the other sedatives really leave her system, and then extubate.  Propofol is a type of sedative on which you awaken completely 5 minutes after it's turned off.

A few bright spots: her chest x-rays have shown that her lungs are holding up quite well to the intubation and lying on her chest.  She has been urinating a lot without a catheter, so that's one less potential area of infection to worry about.  Her 3 incisions look great, and the incision that opened right after she was born has a much lower chance of opening back up this time.  Two nurses rebraided Emma's hair into French braids.  I've got to tell you: seeing your child puffy from a breathing tube, with a tube shoved in her mouth, and her mouth hanging open is not pleasant...but the French braids make it so much more bearable.

One bit at a time

I'm writing this post 48 hours after Emma's surgery, and a lot has happened, so I'm going to try to break it up into a few pieces.


We arrived at the hospital at 10:45 am on Friday for the 12:15 surgery.  Emma did very well before we took her to the OR at 12something (there was a delay from Troup's previous surgeries).  Her surgery ended up not even starting until 4:45, mainly due to several delays with getting Emma's IV's just right.  Troup is very meticulous and is a perfectionist when it comes to how he wants his kids prepped for surgery.  Ok, well, he's that way about everything. 


Once the surgery started, it lasted for about 4 hours, and all 3 surgeries were accomplished as Troup had hoped.  Here are the individual details:


Troup started by taking off Emma's old scar.  I can't quite wrap my head around this, but Troup said a couple times that he just took the old scar off completely.  How do you just "take off" a scar?  Whatever.  So then he opened up her lower back to get to her tethered spinal cord and found a small but very thick area of scar tissue that was pulling on her spinal cord.  When he cut through that scar tissue, he visibly saw her spinal cord move up by a centimeter.  This is significant because a spinal cord can be tethered by scar tissue and then released but still not move enough to be visible to the naked eye.  Another indicator that the cord was very tethered has to do with a method of measuring the extent of tethering and pressure on the brain stem that Troup came up with himself.  Successfully releasing a tethered cord and decompressing the brain stem trigger changes in auditory nerve signals.  So when Troup released Emma's cord, there was a significant jump in her auditory nerve response.  The physical movement of her cord and the auditory nerve response just show that the cord was significantly tethered - they do NOT indicate the degree to which the tethered cord symptoms will subside.


Next, Troup did Emma's decompression.  He did not have to cut through the outer membrane of the brain stem and only had to shave some bone off.  Now here is where we are all foggy (there was A LOT of information thrown at us) - we think he only shaved bone off of a few vertebrae at the base of her skull and not her actual skull, but we're not positive.  Anyway, when he shaved the bone off of wherever it was, he again SAW an immediate response from her brain stem.  He saw it expand and "enjoy" the extra room.  And again, her auditory nerve impulses jumped significantly.  All good news here.


In the traditional school of neurosurgery, you just shave off a huge patch of hair wherever you might be operating.  Troup doesn't like to do this on girls/women, so a long time ago, he asked a nurse to teach him to braid hair.  From then on, he braids one side, and his nurse braids the other side.  Emma got a bonus braid on top of her head, too...I guess because she has so much hair.  I just think that's a nice, caring touch from a doctor who doesn't necessarily need to care what his patient's hair looks like.


And lastly, Troup drained the syrinx from the middle of her spinal cord.  He said that her spinal cord was as thin as cellophane, meaning that the cyst running through it was so thick that it stretched the spinal cord casing, I guess you could call it, to be super thin.  When he put the needle in to drain it, fluid "gushed out" - his words exactly.  When this happened, he could also see the brain stem respond, showing him that the syrinx was putting pressure on the brain stem as well, even though they didn't appear to be directly connected in her MRI.


The immediate responses that Troup saw to all three surgeries proved that they were absolutely necessary and that the timing was good.  As far as seeing results in her everyday life, we may not see results at all, we may not see results until 6 months from now, and we may see results in a month.  Time will tell.  Even if we don't see results, her symptoms would have worsened or new symptoms would have appeared had these surgeries not been done.


Next post - PICU recovery.

Our bubble

I'm not a paranoid parent.  My mother is more diligent about hand cleanliness on Emma than I am.  There.  I admitted it.  DSS, take me away.

But beginning last Sunday, January 5, 2014, I have placed Emma in a bubble.  Sort of - no exposure to other children at church or preschool.  This is an influence from my mom that I HAVE picked up on - the general thought that all children are covered in germs that will make any of us vomit within 5 minutes.  But let me just tell you, to a mom whose child is about to go through megasurgery in the middle of a rough cold, flu, bronchitis, pneumonia, and stomach virus season, this is what all children look like:

We have taken Emma to my parents' house and out for errands, but I can't shake the brainwashing that children carry germs that are 30 times more potent than that of adults.

Plus, it's been entirely too cold to take Emma out.  She sees us putting on and taking off coats, gloves, and hats and understands what that means.  In South Carolina, gloves and hats are a big deal.  So last night, she decided that she was cold (she wasn't) and that she needed a sweatshirt (she didn't).  After we got the sweatshirt on, I asked her what on her body was so cold that she needed a sweatshirt.  I was NOT expecting this response (turn your volume up to hear her tiny little voice...which, sorry, means my voice will be at yelling volume):

Her hair.  Emma is a diva about a few things, but not a lot.  Apparently letting her hair get cold is something that must be prevented at all costs, even if that means wearing her hoodie inside.

Not quite what we were expecting...

Surgery day today didn't exactly go as planned.  We have been working on keeping Emma up later and later all week so that she would sleep in this morning and not be hungry for hours and hours before her surgeries.  Success!  Emma went to bed at midnight last night, and we fed her a big snack at 11:30, her last meal for a week.

When I got a phone call from Dr. Troup's nurse this morning at 8:30, I knew something was wrong.  And then lots of plans went out the window, not just Emma's sleep training - days taken off of work for many people, out of town visitors, rescheduled appointments to work around Emma's hospital stay, and prayer chains, just to name a few.

Dr. Troup is sick.  Coincidentally, so are a lot of people.  With a stomach virus, specifically.  I would guess that someone was inconsiderate and brought their vomiting child out into the general public... but that's just a guess based on what I'm hearing about this stomach virus running rampant.

So Emma's surgeries are now rescheduled for next Friday, January 10 at noon.  It's just one more week, but unless some of you have experienced something to close to what we are, you have no idea how exhausting it is to mentally and physically prepare for a minimum 6-day hospital stay instigated by neurosurgeries.  My house was in order.  We were packed.  Errands were run.  Laundry was done.  Appointments were cancelled and rescheduled.  And now I have to go back to work for 4 days prior to the surgery and somehow manage to do this all over again.

In spite of how this monologue sounds, I'm not bitter.  Ok, well maybe bitter at irresponsible sick people.  But overall, I'm just tired and disappointed.  I'm tired of waiting, tired of preparing, tired of running through scenarios (good AND bad) in my head.  Not depressed, but rather...defeated.  Deflated.

In the busyness of trying to get the word out this morning about the cancellation, Emma and Russell found the perfect way to cope:

We all ended up sleeping until 11:00, and it was glorious.  God has a glorious plan, too, and I have no doubt about that.  He will be with us next Friday, just as He is today.  And He will grant me the patience and peace that I need.