Monday, June 9, 2014

Decannulation Day Video

Last week was big. Big like a hurricane, or like a skyscraper, or like the Titan Beetle (which, FYI, is the world's largest beetle<-- and I would know because 2/3rds of my job is basically just reading books written for seven-year-old boys).

Just like getting the trach, losing it is a lifestyle change. I was telling someone recently that I couldn't wait for Simeon's decannulation because it would be "one less piece of equipment" in our lives but that isn't really the truth. Trach parents know that decannulation actually means one gabizillion less pieces of equipment (and trust me, that's a lot because I had to make that number up). It's lightened our load but, more than that, losing the trach means that Simeon is safe.

I still find myself checking his baby monitor every 5 minutes after we put him down, a habit I'm not sure when I'll break. I used to check because he could have pulled his trach out, or untied his trach ties, or yanked off his ventilator tubing, or thrown his humid vent onto the floor, or done any number of things that would jeopardize his ability to sleep safely. Now I pick up the monitor with the same urgency as before, but I only see him scuffling around, nuzzling his pillow and blowing raspberries into the darkness. Old habits die hard.

I am learning to relax a little.

Even with all the change, I didn't cry on the big day. I spent so many months preparing myself, worrying, and fearing what life would be like without that tiny piece of lifesaving plastic, that when the day actually arrived I had nothing but joy left. We were ready. Just like we were when we got the trach in the first place.

And we thank God our little nugget-of-snuggles has reached this point.

Photos from Simeon's decannulation day. He would not let go of Dr. G (our ENT) and I'm pretty sure Sim would have gone home with him and lived out the rest of his life in happiness if I hadn't wrenched him away. I must say it's nice to watch your kid go back to the OR so peacefully. He didn't even say goodbye...

Dr. S (our pulmonologist) came by for a visit and got suckered into feeding Simeon like a baby goat. It goes without saying (a dumb phrase because clearly I'm about to say it right now...) that Dr. S is the king of above-and-beyond doctoring. If I had a medal I would give it to him, also a crown because of being king and all. Also he reads this blog so clearly he has exquisite taste.

I really wanted to share our day with you and fill you in on all the decannulation details, but I realized that with so much going on it would take quite a long time to recount. Since I assume you're like me and have no patience for lengthy blog posts, I decided to video the whole thing (like a boss) so you can watch our three day journey in five minutes. 

Music is "The Man With the Golden Toy" by Lulu Mae
You can watch the story of Simeon getting his trach HERE.

Thank you all for your kindness and prayers over the past few months (and years, if we're being honest). This day has been a long time coming! 

Tuesday, June 3, 2014

"I think it's time"

Four little words. 

It's the second time our doctor has spoken them. And both times I cried. And, just like the time before, I know he is right. 

We got the results of Simeon's sleep study back last Friday. I hesitated to write about the sleep study or even mention it here after all the cancellations and set backs we've had these past three months. Two weeks ago we spent the night in the hospital and, not unexpectedly, Simeon hated it. All the wires and cords and wraps make toddler sleep studies look a lot like Medieval toddler torture. But we did it and then we waited. Pulmonary called on Thursday-- the results were good. Simeon is a candidate for decannulation but we still needed the thumbs up from our ENT.

He called on Friday.  "I think it's time"

The same words I knew to be true almost two years ago.  The words that marked the beginning of the end of our three month hospital stay.  The words I had feared but that became a relief as I watched my son struggle through each sleeping breath. The words that brought us the trach are the same words we're using to say goodbye to it.

Tomorrow, Simeon will be decannulated.

I think it's time.

I know it's time.

I am nervous.

I am thankful.

The process:
  1.  Tomorrow afternoon, Simeon will be sedated and taken into the operating room for a scope of his airway. The ENT will check to make sure everything looks stable and healthy.  Simeon will still have his trach at this point.
  2. Simeon will wake up from sedation. Once he is fully awake and breathing easily, the trach will be removed.
  3. The doctors will place a sterile bandage on the stoma (the opening at the base of Simeon's neck) and it will begin to close on its own. Think of it as an ear piercing-- if you remove the earring, the hole will eventually close by itself. Stomas are like that.
  4. We will stay in the hospital for a minimum of two days. Simeon will be observed for any signs of distress or labored breathing.
  5. We go home and heal. There's no way to know how long this will take.  It could take two weeks for the stoma to fully close, or it could take a month or two.

 Reposting the video from Simeon's one year trachaversary. Looks like we won't quite make it to his second trachaversary!

Prayers and good thoughts are appreciated. I'll try to keep the Facebook page  and Instagram updated.

Thursday, April 10, 2014

Sleep Study Multiple Choice ( An Update)

Wait-- You thought I said Sim was having a sleep study
You thought we had a plan?

Ha ha, suckers. Me too.

Here's the deal: Sim got a cold and when Sim gets a cold, sleeping in his cap is too hard. So we rescheduled. Then we rescheduled again because, even after two weeks, Sim is still having a tough time breathing with his cap during sleep. And I'm going a little nuts trying to figure out why.

This is how I look standing over Simeon's crib and staring at him every night.
I wear pearls for all my emotional meltdowns.

And this how I look at work, trying to play it cool all day when I'm really going bananas wondering what my child's sleep is like during naptime.
I don't look as much like Rachel McAdams during the day, unfortunately.

So, the question is, why?! Why isn't Sim sleeping with his cap on?
Is it because he...

a) Is still in the midst of a respiratory infection?
b) Has developed a springtime allergy because he thinks it will match his glasses and add to his general geek-chic persona?
c) Loves his trach like a pet goldfish and wants to keep it forever (even though we all know that little bugger is going to die eventually, right)?
d) Enjoys giving me a wicked case of the Victorian-lady vapors by yanking his trach out without warning at dinner parties and in dirty public restrooms (can one order smelling salts on Amazon? Why yes one can...)?
e) Is a fiendish and coniving toddler motivated by barbarous impulses?

(Please leave your vote in the comments.)

All of these are valid possibilities. I just wish I knew the right answer.

For now, this sleep study is set for April 23rd and, even though I kid about this stuff, the truth is that I'm really disappointed and anxious.  I thought he'd be doing so much better by now and it worries me.  I guess I got my hopes up about this whole bye-bye trach mission.  I know that decannulation will happen eventually, it's just that I want it to happen now or tomorrow.

Prayers, happy thoughts, and (good-good-good) good vibrarions (♫♫giving me the excitations♫♫) are appreciated between now and April 23rd.  Until then, you can find me staring at my child while he sleeps like I'm a creepy-creeper from a horror movie.

Or like I'm a Milford Man.
Good thing whatever is affecting his breathing is not affecting his huggability.

Friday, March 21, 2014

Creature of Habit

Right before bed, after teeth are brushed and books are read, Simeon likes to hold his snow globe. All day it sits, ignored and forgotten, on the bookshelf beside his crib. He never seems to care about it until the moment I'm ready to lay him down, then he's a writhing ball of frantic begging, desperately lurching towards that little glass orb-- a last ditch effort to avoid bedtime.

I don't remember when I started giving in but I know that for the past few weeks Sim doesn't even have to ask. Before it's time to say goodnight, I walk over and lift the globe from its perch. I turn the knob on the base and the music chimes. I flip it upside down then right side up and we watch the tiny statues go round-- cat, fiddle, dish, spoon.  Sim does a little shimmy.

But the music grows sluggish and the snow settles. Sim squeezes the globe tight, leaving pudgy fingerprints on the glass and a slight thawing in my heart.  Then, even though he doesn't want to, we put the snow globe back on the shelf. Because it's bedtime. Every night.

Simeon is a creature of habit.

But things might be about to change around here.  Truthfully, they're changing already.  I mentioned recently that Simeon has slept through the night with his trach capped. That means an entire night of breathing through his nose and mouth during sleep-- a feat we wouldn't even have dreamed of a few months ago. He kept his oxygen up. He didn't work too hard, or retract, or wheeze. He was peaceful.

That was about three weeks ago. I didn't say anything for fear of jinxing us but I'm saying it now: Sim has slept with his cap on during nap time and through the night everyday since then.  It's a huge step.

We have a sleep study scheduled for next Thursday that should give us evidence of how well he's maintaining this new routine.  Sim has had studies done before but now the stakes feel higher. If Sim can pass this test, the next step is a scope of his airway, and if his airway looks good (which it always does) then... no more trach.

And that's big. And wonderful. And terrifying.

I am a creature of habit, too. 

I've never had a baby without a trach.  I've never been a mommy without the weight of a trusty suction machine slung over my shoulders.  So even if this habit is medical and high-maintenance and life-altering, I'm just plain used to it-- changing will be hard.

For me, losing Simeon's trach will be as much a struggle as it is a relief.  Oddly enough, that's about how I felt when we got this thing in the first place. Doing what's right for my child, watching him strengthen and grow in independence, feels good. But it also feels scary.

Scary like first steps or first wheels. Scary like putting your snow globe back on the shelf when it's time to say goodnight. Scary like so many moments in life that dazzle as much as overwhelm.

And who knows-- maybe he's not quite ready yet. But maybe he is. We should know something in the next few weeks. I'll keep you posted on next Thursday's study and fill you in on what we learn. Until then, prayers and good thoughts would be the bee's knees.

Friday, February 28, 2014

Health Update (and what I'm reading this week)

Remember a month ago when I wrote about Simeon's trach-related progress? How he had slept for two hours with his trach cap on? Well, the kid never did it again (<--- if I wrote this as an emoticon sentence it would say thumbs-down/thumbs-down/baby-head/Zzz/sad-face-with-tears).  I tried to cap the trach during naps (wheeze-fest) and I tried at night (retraction extravaganza). He couldn't take it. So, for a few weeks, I didn't try it again.

And then something magical happened-- Simeon yanked his trach out.

Now, don't flip.  Part of trach life is knowing that the blasted thing can be removed pretty easily (especially by ornery toddlers) so I wasn't alarmed.  Problem was, I couldn't get a new one in.  I have no idea why (Divine intervention?) but a new trach in the correct size just wouldn't fit.  Every trach-mama keeps a back-up handy for situations like this. The back-up is a size smaller and will usually fit when the normal size does not.  So I put in the smaller size. And a smaller-sized trach meant more space in Simeon's airway so I figured-- why not try the cap again?

So we did-- and he slept for over 4 hours without any problems.

Sometimes he falls asleep folded in half like this.  We call it "going full taco."

That was about a week ago and Simeon has been sleeping with his cap on for a few hours a night, ever since.  Last night he slept in it all night long

Nine hours. No problem.

Heck. Yes.

If he keeps it up, we might be saying goodbye to this thing sooner than expected.

Please send us your warm-fuzzies, thoughts, prayers, and good vibrations. Operation Trach-Out is in full swing (not to be confused with Operation Fake Out, which just involves me hiding tomatoes in my husband's food).

The fabric under his chin is a Dr. Seuss trach pad (because he's literary like that.)

In other news, here's some stuff you should click on...

Faith and politics (or stuff you aren't supposed to talk about):
Anything can be an idol (even your faith).
Rachel Held Evans' post concerning Arizona and religious freedom. 

On disability:
Beth responds to my post on how disability is (or isn't?) defining.
Why first-person language matters.
I would love for the dude on our accessible parking placard to get this makeover..
Not sure about the "world's toughest" comment, but an ad featuring the Paralympics? I am loving it:

Bookworm stuff:
9 Life Lessons from classic picture books.
What Book Species are you?  (I think I qualify for 75% of these)
A wonderful list of 50 must-reads for children.
A pretty accurate look at my day:

What have you been reading on the great and powerful Internets this week?

Tuesday, October 8, 2013

Spina Bifida: Q & A (Week 1)

Last week I invited all you Curious-Catherines to send me your questions and queries about life with spina bifida.  And I got some great ones so bravo, you!

Some of the questions are easy, some will be a challenge, and a few are real doozies.  So, I'm nestled down in my bed with a glass of red wine on the bedside table for support (just in case-- never hurts to be prepared) and I'll do my best to answer honestly.

Let's get this party started.

Lauren asked:  Will Simeon need the trach forever? 
We hope not.  Simeon's doc estimates that he will need the trach for 1 to 2 years.  We're at 1 year and 2 months right now.  Simeon wears a cap over his trach during the day, which basically means that he is not breathing through it when he's awake.  Unfortunately, his primary issue is sleep related (obstructive sleep apnea) so when he falls asleep he still needs the cap to be removed so he can breathe.  Interestingly, obstructive sleep apnea is not terribly common in children with spina bifida.  But we like to keep things extra-ordinary around here.

Anonymous asked:  When did you find out?  20 weeks into my pregnancy.  What does he eat?  Everything.  No kidding.  This kid eats everything.  Including paper, twigs, and the occasional dead moth.  But I think his love language is ice-cream.  We try to stay away from grains and starches that could constipate him, so Sim eats lots of veggies, fruits, and proteins.  Diapers for life? Sheesh.  I hope not, but funny you should ask because the next question is all about that.

Shannon asked:  How are you (and Simeon) managing with bowel and bladder control? 
Welcome to spina bifida world!  Where mothers discuss poop like hipster mixologists discuss homemade bitters.  Seriously.  Poop is big around here (tee hee) so I'm glad someone finally asked me to talk about it.

Most children and adults with SB deal with some bowel and bladder control issues because these functions (like so many others) are controlled by the spinal cord.

Let me begin by saying that we are lucky (for now) because unlike many children with SB, Simeon does not need to be catheterized in order to relieve himself. This does not mean that he actively tee-tees but it does mean that he leaks enough throughout the day to take care of business.  Once he reaches school-age, there are procedures and medications that will hopefully allow him to gain continence so that we can avoid a diapers-4-life situation.  So, for now, we're sittin' pretty in the pee-pee department.  

As for "number 2," Sim needs some help to get the job done and we're in a constant battle with constipation but luckily we've stayed pretty regular by using a good mix of prune juice, fractionated Aloe, and something I like to call "The Pooper's Delight" (Greek yogurt blended with an ungodly amount of dried plums-- aka prunes, which BTW Sunsweet Corporation, you're not fooling anyone with this "dried plum" business).  Again, as Simeon gets older and diapers become a less-than desirable fashion statement, there are procedures and treatments to help school-age kids stay regular and avoid accidents.  Most people with SB are on some kind of bowel program-- meaning they have a bathroom routine that allows them to remain socially continent.

We're going to do our best to keep our business out of our pants-- although let's be honest, who doesn't pee their pants from time to time?  Guilty. As. Charged.

Jessica asked:  What was your first thought when you found out that your baby was going to have a disability? I wrote a lot about those first few moments HERE and HERE but if I had to name my very first thought it would probably be "take a deep breath" followed by "that is not my baby."  I know my answer is not pretty or noble or motherly at all, but I'm sticking with honesty here even when it's ugly.  Interestingly,  I asked Greg what his answer would be and he said "I thought: 'that is my son and why is this happening to him?'"  Basically the exact opposite of my reaction.  It reminds me of why I wrote this post about Greg and what an amazing father he's been through all this.

And... Why did you choose his name, is there a special story behind it?  The name Simeon comes from the New Testament story you can read HERE.  St. Simeon is remembered frequently in the Orthodox Church and his prayer is said during each Saturday Vespers service.  St. Simeon is known for being one of the first men to recognize Jesus as the Messiah.  In icons of St. Simeon, he is holding the Christ child in his arms.  Orthodox Christians are given a patron saint and we felt that St. Simeon-- a Godly man who recognized Christ even as an infant, who was known for his patience, and for what his arms carried, would be a fitting patron for our son.  We named Simeon on the same day that we received his diagnosis.

St. Simeon the God Receiver

That's all for now.  We'll meet back here for more Q & A next week.  And remember that you can still submit your questions HERE. 

*This series is over but you can read our Q&A posts here:

Friday, July 19, 2013

One Year Later: Happy Trachaversary

This week, one year ago, I was standing beside my son's crib outside the operating room.  I was looking at the soft place where his chest sloped to meet his neck.  I couldn't stop touching that spot.

Simeon was about to have a tracheotomy.

I think about that time a lot-- learning the new ways my son would need care, learning new equipment and daily routines, learning that our lives would be just as rich as before-- if a bit different.

Sometimes I hate the trach.  Sometimes it feels so limiting.  But in those moments of frustration-- those moments of what if we never get this thing out?-- I remember the good and I thank God.
  • For the friends and family whose willingness to learn Simeon's trach-care has allowed Greg and I to spend an evening together or get away for the weekend.
  • For our home-care nurses who've become part of our family, who love Sim almost as much as we do, and who are now some of my closest friends.
  • For the children with trachs and their parents who have supported us, loved us, and answered my frantic phone calls.
  • For my son who, in the year since getting his trach, has gone from a tiny, frail, infant to a chunky and active little boy. 
Nothing is all bad.  And even when I sit in the ER (as we did yesterday managing another trach infection) or when I daydream about the day when Simeon will no longer need his trach, I know that saying goodbye will be bittersweet.

The trach gave our son a chance to grow.  I think it saved his life.

So here's to year one.  Happy Trachaversary, little boy.

And in case you forgot the story of our trach...
Music is Keep Breathing by Ingrid Michaelson

Sunday, July 15, 2012

The Girl Who Cried "Trach"

Good news: There is still no trach in the Smith family airways. **Uh-oh! See Newsflash below

Will the cuteness ever end??!
Over a delicious dinner in the hospital lobby (talk about ambiance!), I told my friend Meg that while I'm thankful Simeon has so far avoided a tracheotomy, I wonder what people will think if I keep writing about it and it never happens.  I'll be like that lying little scoundrel who couldn't keep his mouth shut about the imaginary wolf.  Boy did the townspeople hate that kid!  "Oh my goodness!" Meg said. "You're like the girl who cried trach!"

All this is to say that I hope our good news doesn't make you question the legitimacy of my original trach fears.  And we're not out of the woods yet-- a trach is still a possible treatment for Simeon's condition but we're hoping it can be avoided.

So why no trach?  Well, we've had a little miracle. 

Shortly after airing all my fears, Simeon's breathing worsened.  His oxygen levels dipped more frequently and he worked so hard to breath that he was extra sleepy and difficult to rouse during his episodes.  As he slept in my arms, I noticed him struggling harder than usual to move air into his lungs.  His face became gray, then blue, and his oxygen level dropped into the 60s.  It was scary.  And, horror of horrors, the nurses and residents seemed nervous too.  If the hospital is an airplane then the nurse would be the stewardess.  So basically, just when I felt my airplane hit some wicked turbulence, I saw the stewardess' clutching each other in terror and illegally calling their family members to say goodbye.  Not a good sign.   
Cute baby restraint or cruelly humorous baby torture device?

So we were moved to the PICU.  Here, Simeon could be monitored more closely.  This was a hard move for me.  I had grown attached to all our nurses on the general pediatric floor.  We were there for two weeks-- they all knew our little family and took great care of us.  The PICU was less friendly with lots of rules that make it difficult to stay with your child.

Lamest things about the PICU:
  • The bathrooms are for "patients only."  Technically parents are supposed to leave their child's room and walk down the hall to the public bathroom.  The nurse told me it was okay to use the bathroom in Simeon's room.  "All the parents do it" she said.  "But you should know that we don't knock when we go in there."  I looked at her confused. "Even if you know I might be using it?" I asked.  She shrugged, unconcerned. "Yeah, we don't knock." Nothing like using the toilet in constant fear of interruption.
  • No food in the PICU!  This means you have to leave the entire unit to have a peanut.  So when Simeon couldn't eat before a procedure I had to leave him, crying alone in his crib, while I went to the lobby for a snack.  This felt miserable so I chose to ignore this rule.  Greg and I stashed all kinds of food contraband behind the couch.  It felt like summer camp, except there weren't any good songs. Maybe I should write some?
  • No cell phone use.  Ha! Fat chance.
  • Mothers must use the pumping room to pump.  So, in the middle of the night I would put on my shoes, get my supplies, and walk down the hall to pump.  Here's the best part:  the lights in the pump room are activated by motion so about 10 minutes in I would be plunged into darkness.  Oh!-- the sad state of a woman, udders out, hooked up to a machine, in the dark, flailing her arms in a desperate attempt to restore the lights.
  • No flowers.  For real?  Who's in charge of this joint?  Miss. Hannigan?  Miss. Trunchbull?  Geez!
Simeon's magic hat!
So we settled into our new home with every intention of getting a tracheotomy.  There was really not much else to do.  The docs couldn't figure out what was obstructing Simeon's airway and they were running out of options.  The ENT decided to scope Simeon's airway under anesthesia one more time to see if there was anything he had missed-- but he didn't sound too hopeful.  Before they took Simeon in, he told me that if they couldn't find anything new they wanted to go ahead and give him a trach.  "I feel like we've kind of failed this little guy" he said.  I could tell he was frustrated.  There didn't seem to be a clear cause for Simeon's apnea.

We gave permission for the trach.  Greg took the rest of the day off and came to the hospital to meet me.  Watching them take Simeon into the operating room was terrible.  I knew that when he came out he would most likely have a trach.  I wouldn't be able to hold him for about 6 days because he would be sedated as he healed and I didn't know how long it would be until I could hear his voice again.  That scared me more than anything.  I remember when they told me that Simeon wouldn't be able to vocalize because of the trach.  I would miss all those baby noises.

Mommy and Daddy took a lunch break!
And then a little miracle: halfway through the surgery, the docs came out to tell us they had found something in Simeon's airway that could explain the obstruction.  By trimming some tissue, they hoped they could improve his breathing enough to avoid a trach.  Unfortunately, they were able to see that Simeon is obstructing in 4 different places.  Fixing this one could be enough, but if not we were still trach bound.  And so we decided to try it.  I got to hold the little man and hear his voice again.  I really was so thankful.

After the surgery, Simeon stayed in the PICU for 2 days.  No drop in his oxygen levels.  We were all a bit shocked that the surgery made such a big difference so quickly.  They moved us out of the PICU and to the pulmonary floor.  We plan to have a sleep study done this week to see if Simeon has improved enough for us to go home.

But even as I type this, Simeon's breathing sounds worse.  The surgery was three days ago and his oxygen is beginning to drop again during naps.  At this point, I don't know what will happen but I know that I'm so thankful for all the prayers and support that have gotten us this far.  Even if Simeon needs a tracheotomy, finding the cause of his obstruction was an answer to prayer.

By 3 am this morning, Simeon's breathing had not improved.  We were just moved back to the PICU.   Greg and I were able to pack a few things but will need to walk back to the pulmonary floor in the morning to retrieve the rest of our belongings.  They are putting Simeon on a CPAP in the hope that it will allow him to get some restful sleep tonight.  We will likely see the ENT tomorrow.  At this point, I don't know that there are many options for us.

I feel disconnected.  I've watched Simeon cry himself to exhaustion so many times in the past 3 weeks.  No baby likes to get poked and prodded in the middle of the night and having an empty stomach doesn't help.  I don't know how to help.

I've tucked a paper copy of the weeping icon under his blanket.  Maybe I'll pray myself to sleep tonight.   Do you ever wish our faith was more like hocus pocus magic?-- just say the right words, do the right flick of your wand, have the right talisman and kerpoof, you're healed.  But there isn't anything magical about the PICU-- they probably wouldn't allow magic here anyway. 

Lord, have mercy.   Sorry folks, looks like I'm crying "trach" again.

Saturday, June 30, 2012

The Chinese Finger Trap

Rats!  Trapped again!
Chinese finger traps are infuriating.  You slide your fingers into that scratchy tube and you think, "Wow!  There is so much room in here!  I'll bet I can easily leave at any time..."   But right when you decide to move on with your life-- water the flowers maybe... or do the laundry-- WHAM! The finger trap grabs a hold of you like a teenage girl at a scary movie.  And it won't. let. go.

It's easy to get into a Chinese finger trap, but oh so hard to get out.

The hospital is my Chinese finger trap.  Getting here was easy-- getting out?  Not so much.

I know it's been a few days since I've updated, but for a while we really didn't know much.  So put on your doctor hat.  This is a lot of info...

Simeon has had:
  • An MRI to look at his Chiari II malformation and to check his shunt.
  • Swallow study
  • Bronchial scope and a scope of his upper airway and vocal chords.
  • Upper GI video X-ray
  • Sleep study
  • Bowel X-ray 
Tests make Simeon feel...
Here's what we know:
  • Simeon's Chiari does not look compressed enough to be causing these symptoms.  His neurosurgeon felt that decompression surgery would be an unlikely fix, so that's been ruled out.  This is good news.  The surgery can be risky for infants and you never want to do brain surgery "just in case."  That's one you should be sure about!  
  • They did not detect any structural issues with Simeon's airways.  This is also good.
  • Simeon was aspirating when he swallows which likely caused the stridor.  Because of this, he needs his liquids thickened so that they "stick" together better and do not shoot off into his airway.  So... he can no longer nurse.  His milk now looks like pudding in a bottle (ick) but I haven't heard any stridor since the change.  They recommended pumped breast milk with a thickener but this didn't last long because...
  • Simeon now appears to have an intolerance for the dairy in my breast milk.  When I eat dairy, he eats dairy and apparently, he doesn't like it!  We noticed blood in his stool and that he was having bowel discomfort and the docs think dairy is the most likely culprit.  Now, Simeon is on a non-cows-milk-based formula ($$$).  I am still pumping and trying to avoid dairy but they said it would be a few days before it clears from my system.
  • This is a biggie: the sleep study showed that Simeon has obstructive sleep apnea.
    The view from our room
    So, why are we still here?:
  • When someone has obstructive sleep apnea, their brain is telling them to breathe but something is obstructing the airway.  It differs from central sleep apnea, in which the brain does not signal the body to breathe at all.  This explains why Simeon's chest would move up and down as if he were trying to breathe, but no air was going in.  His brain knows he should breathe, but something is in the way.
  • During the sleep study, Simeon had numerous short (2-3 second) apneic episodes, during which he could not breathe.  The scary thing is that he had one long episode that lasted 12 seconds.  That's 12 seconds of trying to breathe without being able to do so.  This episode occurred when Simeon was in my arms and in a very deep sleep.
  • The doctors need to figure out what is causing the obstruction. They believe it could be a reflux issue.  The brain may be signaling his body to breathe but the airway will not open since liquid has refluxed into the throat and he could choke.  To determine if this is the case, Simeon is scheduled to have a GI study done at the beginning of next week. 
  • If reflux is not to blame, it could simply be that Simeon's brain stem, which controls swallowing and breathing, may be underdeveloped (this can be an SB thing). If so, the muscles that control swallowing/breathing have low tone.  They relax so much during sleep that air cannot get through.
  • Basically, they know what the problem is (obstructive apnea) but since they don't know why it's happening, they can't treat it.

Possible treatments:
  • If it's caused by reflux, it could be treated with an antacid like Zantac.  This would be simple and fabulous.
  • If this doesn't work, or reflux isn't to blame, then Simeon could get oxygen during the night to kind of push air through and help him along
  • Or --and this is the scary one-- he could need to get a tracheostomy.  The docs have not told us how likely this is, but the idea breaks my heart.  Since we found out about SB, a trach has been one of my biggest fears.
Don't freak out doc!  Look at me breathe!  I'm feeling great...nothing to see here...move along...
So, that's the info.  They can't send us home with a baby who is having trouble breathing, so we will probably be here for another two weeks at least.

Jeez, Mom...  This post is a real snooze-fest!
I'll post about how we're feeling about all this soon.  Honestly I've not been up to it quite yet.  The truth is that I'm sad and I don't want to post about the emotional side of things until I can do it without bitterness.  So give me a few hours, or days, and I'll be back.

Tuesday, June 26, 2012

Welcome to the Hotel Spina Bifida

I don't have too much time but I want to update everyone on our current state of affairs.   Last night we were readmitted to Children's Hospital.  Here's the scoop:

I have been concerned about Simeon's breathing issues since we first brought him home from the hospital.  I mentioned this in a previous post but Simeon takes regular pauses in his breathing as he is falling asleep.  I was told this was pretty normal but couldn't shake the feeling that something wasn't right.  Since then, Simeon has developed stridor (noisy breathing) that you can hear when he nurses and for about 20 minutes after he has finished nursing.  All of this combined to make me one worried mommy.

We went to see the pediatrician on Monday.  I took a video of Simeon breathing with stridor so she could hear it.  I also clarified my concerns regarding his respiratory "pauses."  I told her that Simeon isn't just pausing when he breaths.  He isn't holding his breath-- he is trying to breath (I can feel his chest heaving up and down) but no air is going in.  This, combined with the stridor, was enough for our pediatrician to call Children's Hospital and ask that we be admitted.

The doctors' main concern is that Simeon is struggling to breath.  He has been hooked up to a monitor that watches his oxygen level.  This level should be between 95 and 100, but when he fell asleep last night, cradled in my arms, his level dropped to 71 on two different occasions.  This is pretty dangerous and Simeon briefly turned blue around his mouth before his oxygen level rose back to normal.  Now, that's enough to make any parent wig-the-heck out.

  • We will be seen by the ENT (ear, nose, and throat doc) who will conduct tests to see if Simeon is aspirating when he swallows, which could be causing the stridor.  
  • They will look at Simeon's airways to see if there is anything abnormal.
  • Simeon will get an MRI to look at his Chiari II malformation.  This malformation is common in people with SB.  Basically, the cerebellum and a portion of the brain stem descend into the top of the spinal column.  This means part of Simeon's brain isn't quite in the right place and may be under pressure.  Most people with SB do not have any symptoms associated with their Chiari but those who are symptomatic have breathing and swallowing issues.
  • The ENT will use a scope to look at Simeon's vocal cords.  Vocal cord paralysis can be a symptom of the Chiari as well.*
Simeon's issues could be caused by a structural problem with his airway, such as laryngomalacia, they could be a result of his Chiari malformation, or they could be caused by something else altogether.  If the Chiari is to blame, then Simeon will need to undergo brain surgery.  The procedure is called a decompression and would hopefully take pressure off of this area of the brain.

Please keep us in your prayers.  I'll try to update when we know more.  For now, we expect to be here in the hospital for most of the week at least.

PS:  The good news is that we are in the new wing of Children's Hospital and it is faaancy pants!

*The ENT just scoped Simeon and his vocal cords are in tip-top shape.  


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