One More Look

The Jackson Family woke up early this morning and headed out, on the all too familiar path, to Lucille Packard Children's Hospital for yet another scope. 

This is surgery number 24...in case anyone else is counting.

Our MOST FANTASTIC Otolaryngologist wanted to take another look at Mr. Man's trachea since his stoma closure surgery last October.  Once Noah was given his "happy juice" and taken back into surgery, Kc and I barely had enough time to grab some lunch in the cafeteria and head out to the courtyard to eat before our MOST FANTASTIC Otolaryngologist came out to give us the good news.  He felt that Bubs' trachea and vocal chords looked great!  So great, in fact, that he wants to do one final scope...two years from now!

Are you kidding me?!?

Two years?!?

WOW!!!!!

Two whole years!

The second Kc and I walked {ok, I practically ran} into the recovery room and saw Bubs, I had the most vivid flashbacks to Noah's initial trach surgery.  I remember walking into the NICU room and seeing my Little Man like this... 

It's amazing how things that happened so long ago can be brought back so quickly...so vividly...so painfully. 

Bubs has come a l. o. n. g. way over these past three years...thanks in part to the love, support, and prayers from all of you.  This road that we are on continues to have its ups and downs, twists and turns, but through it all, our God has been faithful and our hearts are full.

Bath Boy

Noah has recently discovered laying on his tummy in the bath.  For a little boy who used to have a trach...this is pretty HUGE!

 

He also loves to paint with colored shaving cream.  Perhaps a Monet in the making...

  

Lately, Bubs has taken to running around with his hoodie towel on after getting out of the bath.  He likes to pretend he is Superman...but I think he's more like a streaker!

Another Surgery

We're heading back...well, actually Mr. Man is heading back...for another surgery.   If you count all of Mr. Man's previous surgeries and scopes, this is number 22!  It is, however, probably the easiest and least significant of all his surgeries.

 Bubs has a clogged tear duct that needs to be opened.

Seriously?!?

Yep, a clogged tear duct.

Noah's awesome Opthalmologist will be opening up his nasolacrimal duct with a small probe and placing a tiny tube to keep it open while it heals.  How easy is that?!?

Even though this is such a simple procedure, it still is surgery.  We still need to be at the hospital very early.  My little man still can't eat anything after midnight {which makes for a very hungry and grumpy guy}.   Bubs will still be put under anesthesia.  Kc and I will still have to kiss our Little Man good-bye and watch him be wheeled away. It still is scary and nerve wracking.  It is also his first surgery without a trach {which is just making this Mama very nervous}.   

Please think about us tomorrow and join us in prayer for our Little Man as well as for  his amazing doctors and nurses.

He Looked Like This

It has been a L.O.N.G couple of days.   On Wednesday, our MOST FANTASTIC Otolaryngologist performed the stoma closure surgery and declared it a success.  Shortly after the surgery Bubs looked like this...

On Thursday, Bubs was pretty grumpy {all he wanted to do was go to the car and drive home} so we spent most of the day cuddling and watching Signing Time.  On Thursday night, Mr. Man looked like this...

By Friday, Mr. Man was still grumpy, still wanted to go home, and was only pacified by endless hours of Mickey Mouse Club.  Most of the day, he looked like this...

By Friday night, Bubs looked like this...

That's right...we were discharged and on our way home.  Our MOST FANTASTIC Otolaryngologist stopped by to see us after his last surgery and noticed how well Mr. Man was doing.  He asked us if we wanted felt comfortable taking Noah home.  

Are you kidding me?  

Somehow I couldn't get the words out fast enough so I just blew him a kiss.  One hour later we were in the car making the three hour drive home.

Bubs continues to do excellent post surgery.  He has started to babble quite a bit as he explores his voice.  It is still quite hoarse and breathy but is getting stronger every day.

Thank you so much for all your prayers!  I can't wait to share with you this new path that we are on.

Pre-Meds Are Working

Noah continues to do well post surgery.  He has taken to breathing like a fish to water...so to speak.  We're all just hangin' out in the PICU, watching loads of Mickey Mouse Club and Signing Time, hoping to head home in the next several days.

Shortly before Bubs' surgery on Wednesday, the anesthesiologist gave him a pre-med.  It was intended to relax Mr. Man and, boy, did it every work.  Being the amazing father that he is, Kc took a quick video to remember our "drunk" Little Man.  Enjoy!

Whole Sans-Hole

Well, Noah's stoma (blow-hole) closure surgery was an incredible success thanks to our MOST FANTASTIC Otolaryngologist. About two hours after we kissed our Noah goodbye we were finally escorted to his bedside in the PICU where we (in awe) watched and listened to him inhale........then exhale from (only) his most perfect mouth and nose. As our Little Man woke up from his deep anesthesia sleep his recovery went relatively well considering his breathing experience is entirely new to him. The first words Noah signed was, "MaMa", "car" and then immediately pointed towards the exit door. "MaMa, get me outa here!" That's our Noah. We thank you so much for your thoughts and prayers for our Little Man. We are expected to stay until Sunday so please keep them coming.

WOW!

So much has happened in the past few weeks.  First off...

we've moved!

We're now in an adorable three bedroom home with a large backyard.  Our first morning in the house we found this...

a cute, little box turtle who likes to crawl under the fence from our neighbor's backyard into ours.

Noah is in absolute HEAVEN playing in the backyard {something that was lacking in our condo}.  He shovels and digs in the dirt, rakes up the leaves, and "explores" every little square inch.  It is so fun to see my Little Man doing "boy things".

After Noah's stoma closure surgery was canceled, re-scheduled, re-re-scheduled, and re-scheduled once again, we are finally heading up to Stanford tomorrow so the MOST FANTASTIC Otolaryngologist can close my Little Man's "blow-hole".  It has been one year and three weeks since Bubs' very first procedure and we're hoping to close the book on this chapter in his life.  Please pray for our safe travels, the skill of the surgeon, the care of his nursing team, and speedy recovery for Bubs.  We promise to keep you posted.

Noah needs another surgery like he needs a hole in his throat

On Wednesday,  we headed back up to Stanford for yet another scope of Noah's trachea.  

 

We had a 4:00 a.m. departure, a 7:15 a.m. arrival, and an 8:30 a.m. procedure time.  We were confident that we would be back on the road, heading home, by noon. 

That, apparently, was not to be.

By 10:30 a.m. my Little Man looked like this... 

Notice the IV {both of them}.  Notice the leads.  Notice Charlie by his side.  Notice his trach...wait...what?!?  NO TRACH!!!!!!!!!

Our MOST FANTASTIC Otolaryngologist came out after the scope looking like a ten year old boy staring at his pile of birthday presents.  "So", he said enthusiastically, "do you want to get this trach out?"

"Um...OK", we nervously responded, looking at each other for reassurance.

This is it...holy crap...this is it!

After a quick trip to the ICU, Our MOST FANTASTIC Otolaryngologist pulled Noah's trach and we all took a deep breath.

Inhale.  Exhale.

Inhale.  Exhale.

Bubs was doing it.  We were doing it.

Inhale.  Exhale.

Can you believe this???

Inhale.  Exhale.

So simple...so dramatic...so pure.

Just a Reminder

To my dear sweet Bubs,

Sometimes I take for granted all the things that you have already learned and forget that you are still just a little guy...a toddler to be exact.  Each and every single day you will experience new and wonderful things.  Experiences that you will learn from.  Sometimes those lessons are positive, other times they are negative.  That is the reality of life.  You have SO many lessons yet to learn and so many lessons that will need to be repeated...over, and over, and over again. 

It is with this knowledge that I must remind you that it is NEVER ok to pull your trach out.  It tends to freak people out.  This is especially true when Daddy and I are out on a date and you are home with a sitter.

Once is enough.  Twice is plenty.  Seven times is just too many.  Thank you!

Love,

Mama

Bonnes Nouvelles

True...it was a very L.O.N.G. day {got home after 11:00 p.m.}.

True...Bubs was very tired and very hungry by the time we got to Stanford.

True...the surgery was over an hour late.

False...Bubs was willing and eager to get wheeled into the OR.

True...the anesthesiologist gave Mr. Man a sedative to calm him down before the surgery.

False...the sedative worked.

True...the anesthesiologist had me scrub in and carry a very unhappy Bubs into the OR.

True...I was thrilled to be able to hold my screaming son while he was put to sleep {it was the third time I've gotten to do that}.

True...Kc could not wait and got dinner in the cafeteria while I was singing "Jesus Loves Me" as Bubs was being held down by three additional nurses as the very patient anesthesiologist was attaching a pulse ox probe to Mr. Man's big toe.

False...I was able to finish my dinner {once I got it} before our MOST FANTASTIC Otolaryngologist and his French counterpart joined us to go over the results of the super speedy scope.

"Do you want the good news," he asked, "or the good news?"  

Bubs' trachea is staying open!  

Bubs' trachea was dilated to 1 cm! 

Bubs' trachea is looking great!  

Bonnes Nouvelles!  

Good News!   

We're heading back in one month for another scope but our MOST FANTASTIC Otolaryngologist said that the only thing keeping the trach in my Little Man is my Little Man himself.  Noah now has the anatomy to be able to breathe through his nose and mouth...he just has to learn how to.  

WOW!!!  

Wow!   

Wow!  

wow.   

wow.  

That is awesome...and terrifying...at the same time.  

It is now our job to teach Noah how to breathe...the thing that most people take for granted...the intrinsic task that happens 21,000 per day...the unconscious exercise that all newborns participate in...Noah now has to learn. 

How in the world do you teach someone how to breathe?  I must have missed that class when I went through the credential program. Where in the world do we start???

For those of you who just love pictures...here are a few more of my adorable Bubs.

Looking down from above.

The white tube you can see is his trach.

You get a great shot of his trach here as well.

Smile Pretty...In French

We're heading back up to Stanford for another scope tomorrow.  

Our MOST FANTASTIC Otolaryngologistis will be taking another peek at Mr. Man's trachea and we're hoping for a gorgeous hole rather than an ugly crevasse.   Joining our MOST FANTASTIC Otolaryngologist in the operating room will be one of his colleagues from France.  Yep...France.  Bubs will be smiling pretty for two very important surgeons tomorrow.  I hope he is bilingual and can open wide in French.

We just got word that the procedure is not scheduled until 5:00 p.m. tomorrow evening.  

Nice.

Unlike Noah's previous scopes, we don't have to wake up at 2:00 in the morning.  We don't have to be on the road before 3:00 in the morning.  We don't have to be in the pre-OP room by 6:00 in the morning.  

Nice.  

Unfortunately that means that we won't be out of surgery until after 6:00 in the evening.  We won't be out of the recovery room until after 8:00 at night.  We won't be home until after 11:00 at night.

Seriously!

It's going to be one l. o. n. g. day tomorrow. 

And just because I hate to have a post without any pictures...here's my adorable Bubs

Little Hole

If you're a bit squeamish, you might want to skip this next post.  

Here are the pictures from Noah's last scope.  You can see his very small hole in this first shot.

 Here's the balloon going in the hole.

 The balloon is doing it's thing and expanding Mr. Man's trachea.

 We've now got a large opening again.  Yay!

Noah did quite well on Wednesday and our MOST FANTASTIC Otolaryngologistis hoping that the next several dilation procedures will do the trick.  We'll see...

Open...Closed...Open...

We're heading back up to Stanford Children's Hospital tomorrow morning {leaving at 3:30 a.m.} for yet another procedure.  The last time we were there, our MOST FANTASTIC Otolaryngologist took a look at Noah's trachea {under sedation, thankfully} and found quite a bit.

First off, Mr. Man's bone graft in his trachea looks great.  There wasn't any scar tissue to remove and it was healing up quite nicely.

Actually...a bit too nicely.

Noah's trachea was trying to heal itself back closed.

EEK!!!!

We went through so much to open up Noah's closed trachea and now it's closing back up again.

EEK!!!!

So...two weeks ago...our MOST FANTASTIC Otolaryngologist took a balloon and dilated Noah's trachea.  The 1 mm opening expanded to 5 mm.

Much better!!!

We'll be heading back once a month so that dilation procedure can be performed to help Noah's trachea "remember" that it is supposed to stay open.

The best case scenario is that the monthly dilation procedures {a total of five of them} will be enough to keep his trachea open.  If not, we'll probably have to have yet another bone graft and start the process all over again.

EEK!!!!

Noah's body has always been good at healing...we just never knew how good!

On the Road Again

We're heading back to Packard Children's Hospital at Stanford today.  Our MOST FANTASTIC Otolaryngologist will be taking a peak down Noah's trachea to see how it's healing.

It's...an early morning, a three hour drive, the monotony of pre-admitting, the fun of waiting through the procedure, the joy of the recovery room, followed by the anticipation of another three hour drive home...after he's alert and responsive...after he's deemed fit...after he is able to eat without vomiting...after all the tests have been done...after all the results have come back...after...after...after...

Sigh...{breath} 

We're hoping to get some answers why Noah is having such a hard time breathing through his nose/mouth as well as why he's been so sick the past few months.  Answers would be great...but...we're not holding out for them.  We know how unusual Noah's condition is and how much patience is required to be his parents.  Answers are good, but we're trusting that God has a plan for our Bubs.  A plan that far surpasses our understanding.

This adventure has been, and will continue to be, One Wild Ride!  We know that in the blink of an eye, it will all change...it will all be over...and we are holding on to what God has entrusted to us.  Children truly are a gift from Him, and we are merely here to nourish what has been given to us.  Though this road is bumpy, God has given us All Terrain tires.  We're eager to learn what He has planned for our family.

Infirmary

It's been WAY too long since I've posted anything and I apologize. The Jackson household has been a true infirmary these past three weeks.

Right before Christmas, Mr. Man was hit with a nasty trach infection which was followed by the flu. Not just any flu, mind you, but a real nasty, last for several weeks, kind of flu. It was so bad, in fact, that we have been to urgent care once, seen the pediatrician twice, and have contemplated checking Noah into the hospital. Bubs' flu has lead to strep throat which has just knocked him out...vomiting, diarrhea, coughing, nausea, runny nose, excessive secretions, and fever of 102.8. Mr. Stinkpot has not slept through the night since before Christmas, thus, neither have we.

As if this isn't enough, Kc caught a cold last week and developed an ear infection. Seriously?!? An adult with an ear infection?!? Yep!

So...we've both been struggling to keep our heads {and ears} above water while we take care of our sick Little Man. I think I have been struggling most of all. Heading to work every morning and leaving my sick Bubs is just breaking my heart. Watching him cry, sign "Mama", and reach out for me is just heart wrenching. I have been having a hard time being upbeat and patient with my students at work and an even harder time being loving and supportive to my hubby at the end of the day. I pray every night that I am filled with love and patience while Noah is filled with strength and healing.

There's No Place Like Home...There's No Place Like Home...

We made it home last night...finally. There was a bit of a back-up of patients being discharged from the hospital yesterday and we had to wait {forever} for discharge orders to be written up. Once the orders were {finally} given, we were able to make the three hour drive home.

We have discovered, after giving our Little Stinkpot every single type of food to taste, that he does enjoy salty things. For a while, goldfish crackers were his food of choice. Now...let me clarify. Bubs did not actually eat the crackers. Oh, no! This is Stinkpot we're talking about. Eating is OUT OF THE QUESTION! He did, however, lick all the salty goodness off the goldfish. And let's face it, that is the best part of the cracker anyway.

Mr. Man has recently expanded his repertoire of salty foods that he enjoys licking, but he definitely gravitates towards foods that are abnormally orange.

He has learned how to say most of his colors and quite enjoys the color orange.

Anyway...to keep him occupied on the drive home, I gave him some Cheetos and boy did he ever love them.Yummy, Salty Goodness!The famous bright, orange fingers.If there is food all over your face, it must be good!We finally made it home and Mr. Man was SO happy! Bubs ran into the house and insisted on taking ALL his toys out and playing with each and every single one of them. Too cute!

We all enjoyed a GREAT night of sleep, uninterrupted by nurses, beeps, doctors, medications, and the hum of florescent lights. We are now ready to start our Christmas Vacation! Yeah!

Stayin' Down

Just a quick update to let you know how Mr. Stinkpot is doing.

He was started on Pedialyte today...very slowly. Noah tolerated it quite well and had a great day considering he underwent surgery the day before. Mr. Man played with just about everything in and around his crib, charmed both of his nurses, watched some Signing Time on TV, convinced the doctors that he didn't need oxygen and could go back to room air, traveled from one PICU room to another, and learned how to sign Cuz Jonah {we've been working on that one since we'll be seeing him soon}.

Noah called it a night around six p.m. and I don't plan on being far behind him. He started on formula tonight and if he tolerates that fine and is able to keep all his food down, our MOST FANTASTIC Otolaryngologist will discharge us tomorrow. YEAH!!!!! We've been singing the "stayin' down" song {to the tune of Stayin' Alive} all day today and it seems to be working. Wish me luck and I spend another night at Noah's bedside and attempt to sleep in a recliner.

Gorgeous Looking Hole

That's what our MOST FANTASTIC Otolaryngologist said after Noah's surgery today...he's got one "gorgeous looking hole".

The stent removal went well today and when the doctor looked around, he said Noah's trachea looked very good. There was very little granulation tissue and the hole was nice and big. Our MOST FANTASTIC Otolaryngologist even plugged Noah's trach with his finger, and while Mr. Man DID NOT enjoy it, he did breathe through his mouth.

WOW!

Breathing through his mouth!

Well...it was more like crying through his mouth, but whatever.

Noah's vocal chords are "quite unique" and we have yet to hear any noises from him but the doctor is cautiously optimistic for the future.

We're currently in the PICU {the exact same room we were in last time} and thanks to Tylenol, Noah is resting comfortably. We will begin feeding him tomorrow morning and are fervently praying that our Little Stinkpot does not vomit and aspirate {like last time}. If Noah can tolerate his food and "looks good" we'll be going home on Friday.

Thank you all for your thoughts and prayers. Your encouraging words are a true blessing!

On The Road Again

So...if you could go anywhere in the world, where would you go?

New York City?

Hawaii?

Venice?

Paris?

Well...if you were Noah, you would choose this place...
Doesn't it just look amazing?!? They have lovely accommodations, excellent room service, gorgeous views, and great entertainment. Where, you might ask, is this amazing resort? This awesome destination? This relaxing retreat?

Why it's the Lucille Packard Children's Hospital at Stanford...of course. And if you were Noah, this would be your third visit in the past four months. One would think he truly LOVES this place.

Mr. Man is just truckin' his way to Packard.
We got the news late tonight that our surgery time, which we thought was six a.m. which meant a three a.m. departure time, was actually nine a.m. which means a respectable departure time of five a.m.

Our MOST FANTASTIC Otolaryngologist will remove the stent {you remember that famous stent}, take a look around, and remove any scar tissue.

We should get a good picture as to what Noah's future looks like. How his trachea is healing up? How are his vocal chords looking? Functioning? Is his epiglottis functioning? So many questions we have...they will not all be answered...but it will be a start.

Please pray for Noah and his surgical team tomorrow. We are one step closer to a possible decannulation...one baby step...one Noah step.

Home

It's where the heart is and where the Jacksons are today!!!!!

We were given the go-ahead to leave Packard Children's Hospital yesterday and braved the long drive home in pouring rain. Mr. Man did great on the ride home and had the BIGGEST smile on his face when we walked in the front door. I think he must have taken all his toys out in the first ten minutes...just to touch them...remind himself that they truly exist...let them know he hadn't forgotten about them. It was too cute!

Noah is doing pretty well today. He still refuses to swallow any of his saliva and is a walking waterfall! We have gone through all the bibs I could find as well as two shirts. Hopefully he will learn to swallow again and the next four weeks won't be quite so moist.

Mr. Stinkpot also continues to vomit. UGH!!!!! We have decreased the amount of food he is given and are thinning it out quite a bit. We need to make sure he doesn't get dehydrated and that his body has enough energy to continue healing. He is getting medications every three hours around the clock to prevent infection, manage his pain, and hopefully, help settle his stomach.

We have so many things to be thankful for this year...way to many to count...but we are most thankful for our amazing family and friends who love and support us and our awesome God whose worth is beyond measure.