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An Update and A Statement about How Much You Are Helping…

AUTHOR: | POSTED: 11/25/14 6:49 PM
CATEGORIES: Blog

Nicholas underwent a broncoscopy and laryngoscopy this morning.  This was his second time being “bronc-ed” by a pulmonary team but the first time an ENT team joined in for a good look at his upper airway.

Here’s what they found…

Pulmonary Findings

The pulmonary team found nothing abnormal.  His bronchus, lungs and all other parts of his pulmonary system are anatomically normal.  They were able to biopsy some cilia (your lungs are lined with cilia…little hair-like fibers that help move mucus and foreign matter out of your airway).  The results will be available in a couple of days, but they were able to confirm that they were moving…which is good.  (One of the possible diagnosis was a disorder of the cilia and although most ciliary disorders are manageable, they are debilitating.)

So…in a nutshell…the pulmonary team found nothing remarkable.  (Same finding as the pulmonary team in Toledo.)

ENT Findings

The ENT (ear, nose and throat) team did find something abnormal.  Nicholas’ airway right underneath his vocal cords was narrowed by more than 50%.  What that means is every time Nicholas tries to inhale, he has to exert 16 times more force than normal.  That’s a lot of work for a seven pound baby.  It also explains why Nicholas uses his whole upper body to inhale resulting in a lot of shoulder movement and a head bob.  Even better…it could mean that he hasn’t been able to take a deep enough breath to fully inflate his lungs.  Hence, random wandering lung collapse.

In order to correct the narrowing the physician inserted a breathing tube to manually remove the scar tissue that has formed around the opening of his airway.  He called it dilating the airway.  He showed us before and after pictures.  The after picture definitely showed a widened airway.   This is good because if Nicholas was born with the narrowing, it could explain all of this.

Now, before anyone gets too excited, there is a catch to this theory.

Nicholas was intubated last week for 36 hours.  During that intubation period he was very, very agitated and couldn’t stop thrashing about.  It’s possible the tube running down the back of his throat irritated the airway and caused swelling…which caused the narrowing of the airway that was found today.  If that is the case the reason behind the random wandering lung lobe collapses is still unknown.

We won’t be able to confirm anything until Nicholas is extubated and begins to recover.

A Few More Details…

  • Much to our dismay Nicholas returned from the operating room intubated.  He will remain intubated and on a vent for at least 24 hours (and three doses of steroids to help prevent swelling of the airway.)
  • He is comfortable, however.  Last week he was only mildly sedated during his 36 hour intubation.  Mott does it differently.  He is currently more adequately sedated to keep him calm.  He looks like a very peaceful sleeping baby burrito.
  • We will be repeating the laryngoscopy next Monday to remeasure the airway that was dilated today.  We have been told that it may be necessary to re-dilate the airway multiple times before it actually stays open.

Tomorrow Will Be Scary…

Last Friday, when Nicholas was extubated and had trouble breathing afterwards, was probably one of the most stressful days of this journey.  Seeing as how we are facing a second “extubation day” there is a lot of anxiety on our part.  Things *are* different this time.  We already have the steroids on board to prevent swelling and stridorous breathing, but there will be a period of the day where the sedation will be lifted in order to extubate him properly (he needs to be awake enough to breathe on his own when extubated).  That will be a rough couple of hours because he will be very uncomfortable.  That’s hard for us to watch.

What You Can Do for Nicholas…

As you know Sean and I have begged everyone and anyone to keep Nicholas in your thoughts and prayers.  We believe in positive energy and divine intervention and are convinced it is working (in conjunction with some pretty kick-ass science) to cure our little boy.  Tomorrow we need to storm the heavens with more prayers for a smooth extubation without complication.

So, if you wouldn’t mind….we’d be most appreciative.

Oh…and About Your Unwavering Support…

I want to thank you. You know, for years I’ve watched pleas for prayers and positive thoughts come across my various social media feeds.  I don’t think I’ve ever scrolled by one without commenting and throwing up a small prayer for the person in need, but I’ve always wondered if it made a difference.  Now that I’m standing on the side of the begger, I can honestly tell you that reading your comments really does provide a tremendous amount of comfort.  I would equate it to a reassuring hand squeeze…over and over and over again…and it helps.     It lessens the feeling of being alone in this.

For that, I am thankful.

Our sleeping baby burrito.

Our sleeping baby burrito.

Monday Morning Update…A Bunch of Surreal Moments

AUTHOR: | POSTED: 11/24/14 2:26 PM
CATEGORIES: Blog

Well, we’re here.  Nicholas settled nicely into his new home away from home.  To say we are impressed with Mott would be an understatement.  This place is a well oiled machine that makes me, as a mother, feel reassured that I’m not the only one willing to throw the kitchen sink at this.

Nicholas' ride to Ann Arbor.

Nicholas’ ride to Ann Arbor.

As of this morning, Nicholas has been seen by no less than a dozen doctors/fellows/ residents and nurse practitioners.  At one point, as his medical team rounded, his room was full.  I was standing there listening to them talk about his case history and thought to myself that it looked like a scene from a television show.  Think Gray’s Anatomy.  I actually got quite caught up in listening to their thoughts about what this probably wasn’t—and what it could be.  Then I abruptly snapped out of it and reminded myself  this was my son they were talking about.  Never in my life would I have pictured myself here…under these circumstances.

Surreal moment.

I spent the night in a “nesting room” just around the corner from Nichlas’ room.  A nesting room is a no frills but invaluable hotel-like room located IN the NICU.  It allows parents to be at their child’s bedside within seconds if needed.  It also allows Mama-bears, like me, to drag ourselves to our babies every three hours for feedings…just like we would at home.  Except we are not at home.  We’re not even remotely close to home.  Never in my life would I have pictured myself walking around a children’s hospital in my pajamas.

Surreal moment.

Because it looks like we are going to be here for awhile I’ve been generously given a room at the Ronald McDonald House.  Mott actually has two Ronald McDonald Houses.  One across the street and one on the 10th floor of the hospital.  I’m on the 10th floor.  As the manager of the RM house went over the paperwork with me and showed me around the facility I caught myself drifting.  Never in my life did I picture checking into a Ronald McDonald house.  Those are for families with sick kids.  Oh wait…

Surreal moment.

We are still waiting for a consult with a pediatric ENT.  It looks like Nicholas will undergo another broncoscopy tomorrow.  The procedure will be performed with both the pulmonolgy and ENT teams present.  They will be taking a second look at Nicholas’ lungs and his upper airway.  This is the same procedure we had last Wednesday but with different eyes.  A lot of different eyes.  Hopefully they see something definitive.  A diagnosis would be nice…or will it be?  What if it’s something awful?  What if it’s not curable?  Will we ever get to take him home?  If so, when?  Next month?  Next year?  Stop.  Take a deep breath and remember to take this one baby step at a time.  Easier said than done… because never in my life did I picture mulling over these kinds of questions.

Surreal moment.

*****

Again, thank you all for your continued support and prayers.  The are appreciated more than you’ll ever understand.  The next update will most likely be after tomorrow’s procedure during the early evening.  In the meantime, please keep praying!

Thank you.

 

Change In Plans…Our Little Spartan is Going to The Wolverines

AUTHOR: | POSTED: 11/23/14 10:54 AM
CATEGORIES: Blog

Nicholas had a good night.  He was able to nipple his last feed–he gulped three ounces in a few minutes like the little chowhound he is–and is pretty content.  He is still on CPAP through a nasal canula to help keep his upper right lobe inflated.  The good news is the lung collapse in that lobe isn’t a complete collapse.  It’s “diminished”…so somewhat open.

Of course, all of this means that he continues to avoid intubation.

Hallelujah.

After looking at this mornings chest xrays and speaking further with the neonatologists we have decided to move Nicholas to CS Mott Children’s Hospital in Ann Arbor, Michigan.  Our doctors were neutral on Cincinnati Children’s versus Mott Children’s given Nicholas’ specific pulmonary issues.  Considering Mott’s close proximity to our home (50 miles) we have decided to go in that direction.  This hasn’t been an easy decision because logistics regarding our other children are playing a part.

I’m not sure that is right.

But when our doctors tell us that they think he can be treated in Ann Arbor with the same level of care that he’d get in Cincinnati–well–it seems like a no-brainer.

The bottom line at this time is that we do not have a diagnosis for Nicholas.  We have ruled out a lot of conditions–some of them very serious– but we don’t know why his lung lobes, particularly his right upper lobe, continue to diminish/collapse.  We’ve been told twice in the last sixteen hours that there is a possibility that Nicholas could just suddenly get better and we may never know.

Wouldn’t that be nice?

*****

Sean gave me a break last night by letting me sleep at home.  I had taken the last three night shifts in the hospital and was overdue for some solid rest.  Before I went to bed I was able to get some quality time with the Ryan, Mary Kate, Reagan and Isabella.  I did Isabella’s hair.  MK and I snuggled and watched Property Brothers.  (MK loves Drew Scott’s hair.)  Reagan and I talked about how she wanted to come see Nicholas and bring him some toys.  She thinks he’s bored just laying around the hospital all day.

She’s probably right.

Ryan had some friends over to watch football and my mom made chili.

It was all so normal.  But it wasn’t.

I don’t think I’ve ever lived with such an uneasiness.  We’ve been through unsettling stuff before but not like this.  This is a new level of angst.   If I’ve concluded anything from this nightmare it’s that I’m not grateful enough for my healthy children, and I haven’t done enough to help other parents suffering through something like this.  I promise that will change.  When this is said and done, I’ll have to do something to help.  Not sure what…but something.

*****

I’ll post an update to our Facebook page after Nicholas is settled in his new digs tonight.  I’m tempted to deliver him to them in his, “Little Spartan” onesie.  I probably won’t.  But I’m thinking about it.  (The U of M connection is killing me a little bit.)

Thank you again for all of your thoughts, prayers and support.  They are helping more than you will ever know!

Daisy, our elf, showed up at the NICU today.  The girls are ecstatic that she's watching over their little brother right now.  Maybe she'll bring us some old fashioned North Pole magic.

Daisy, our elf, showed up at the NICU today. The girls are ecstatic that she’s watching over their little brother right now. Maybe she’ll bring us some old fashioned North Pole magic.

Saturday Morning – Turning One Last Stone

AUTHOR: | POSTED: 11/22/14 9:54 AM
CATEGORIES: Blog

Thank you so much to everyone who answered our call for thoughts and prayers yesterday.  They worked.  The stridor is gone and Nicholas didn’t have to be intubated.  Last night was a little rough because he wasn’t allowed to nurse.  The doctors wanted his tummy empty in case he did need to be re-intubated.

He’s eating now.  Albeit through a gavage tube—I don’t think he cares.  He’s not hungry any more.

Now that yesterday’s swollen airways are on the mend we turned our attention back to the original problem of randomly collapsing lung lobes.  Unfortunately, this morning’s chest Xray revealed a collapsed upper right lobe which was the original problem that landed us here.

Ugh.

Sean and I informed the neonatology and pulmonary team on Thursday night that if after extubation the lung problem re-emerged we would need to move Nicholas to Cincinnati Children’s (one of the premiere pediatric pulmonary hospitals in the country).  After this morning’s Xray they offered to flip one more diagnostic stone before we go.

Nicholas is currently on call for a chest CT angio with contrast.  They are looking to rule out an errant blood vessel running off of the aorta that may be placing unnecessary pressure on the upper lobe of his right lung OR a malformed bronchial tube that is not allowing air to flow to his upper right lobe.  If they find no structural abnormalities they will facilitate the transport for us…hopefully…later today.

If they do find an abnormality–well–we will cross that bridge if and when we have to.

You all, I cannot express how unsettled we are.  There is a lot of unknown in our immediate future not to mention the possible logistical nightmare of tending to a critically ill child hours from our home and our other five.  They all have needs and our older four are getting theirs met by people other than their parents.

It’s amazing how mom guilt can be so devastating.

Sean and I continue to be thankful for the help of my mother, his mother, our old babysitter, Valerie; our new baby sitter, Erica; and our family and friends who are on call for whatever we need.  It’s comforting to know we have help.

As always, please continue to hold Nicholas in your prayers.  He is comfortable this morning and for that, we are grateful.

Oh…and I will update our Facebook page later this afternoon when we have the results.

*****

Drew was able to meet his little brother last night.  It was a special moment.

Our alpha and our omega.  (During "No Shave November")

Our alpha and our omega. (During “No Shave November” no less.)

 

 

Friday Morning Update…Looking for Some Urgent Prayers

AUTHOR: | POSTED: 11/21/14 11:12 AM
CATEGORIES: Blog

Nicholas was extubated this morning after his chest xray showed an almost  complete recovery in his lungs.  But, as we are learning one delicate medical situation can often lead to another.   It appears Nicholas’ airway is quite swollen due to irritation from being intubatedtubated.  He is wheezing like he has a monstrous case of the croup.  He has been placed on an aggressive steroid to bring down the swelling in his airway.

Please pray that this works.  He is really struggling and if it doesn he will need to be re-intubated.

More in a few hours.