Tuesday, November 30, 2010

Luke's Fourth Broncoscopy

Yes, it is Luke’s fourth, even though I titled the last note “Luke’s Second Broncoscopy”.  Last night I was thinking over all the procedures Luke has had to be anesthetized for, and remembered that Luke had one broncoscopy before he was trached at 3 months old.  Anyway, this is the story of Luke’s fourth bronc. 
After Luke’s third bronc in September, our ENT surgeon, Dr. Chung, told us that he had removed more tissue that had grown up in Luke’s airway above Luke’s trach.  Dr. Chung was confident that Luke should be able to begin using his cap and moving towards decanulation within a few weeks.  As you already know, the longest Luke has tolerated his cap has been for 13 breaths (a little longer than 30 seconds).  That puts us still a ways from decanulation because Luke has to tolerate the cap around the clock before they will consider pulling his trach.  At our most recent visit with our pulmonologist, Dr. Gelfand suggested that we get a second opinion from another ENT surgeon specializing in pediatric airway issues.  His office set us up an appointment with Dr. McClay for the end of October. 
As expected, Dr. McClay wanted to send a scope down Luke’s airway so that he could see with his own eyes what might be causing Luke’s difficulties.  The broncoscopy (4th total, 3rd within seven months) was scheduled for yesterday morning at Children’s Hospital. 
I went in with quite a bit of anxiety and dread.  So far, we have done nearly everything concerning Luke’s care through our doctors at Medical City (there was that five-week stint at Our Children’s House at Baylor, but we don’t like to talk about that).  Everything from blood work to MRI’s to ER visits to Luke’s major surgeries has been performed at Medical City.  As you can imagine, David and I are quite attached to the folks that work there and accustomed to the way that hospital works.  I can get pretty high anxiety in new situations like this.  I was dreading not knowing the people caring for Luke, not knowing my way around the place, not knowing the rules of the hospital, etc.  Plus, I didn’t have high hopes for finding out any new information about Luke’s difficulty, since Dr. McClay declined to confer with Dr. Chung. 
We arrived at Children’s Medical Center at 7:15 yesterday morning.  I admit I was very impressed with the ease of finding our way around, with the parking, and with the helpfulness of the staff.  If you walk into a room looking slightly like you don’t know where you’re headed, someone asks you if they can help you get where you’re going.  Checking in and getting Luke ready for the OR was fairly easy and straight forward.  The staff was really good at answering questions and telling us how things would go.  We waited quite awhile from the time we were finished with pre-op before the nurse came to take Luke to the OR. Even though this was the sevententh time they’ve taken Luke like that, I still cried.
The procedure took about an hour and 10 minutes until the doctor came and spoke with us about his findings.  He cleared out another chunk of granulation tissue in Luke’s airway above his trach, although, I don’t know how large it was compared to the others that have been removed at other times.  Dr. McClay showed us pictures of Luke’s airway and told us that it is significantly narrow.  Before he dilated the airway, the pictures looked like his airway is just a slit, where it should look like a pipe.  He dilated the airway to find out the nature of the tissue.  From my understanding, it was difficult to do and nearly impossible to keep it dilated.  This told him that the tissue is quite soft and immature.  Because of the immaturity of the tissue, he can’t do anything to repair it at this time.  It’s impossible to know how the tissue is going to change in the near future.  He expects that Luke’s airway tissue should mature enough to know how to correct it by the time he’s two years old.
So our plan is to take Luke back to Children’s for another bronc in April (Luke will be almost two).  At that time Dr. McClay expects that he should be able to correct the narrowing (called stenosis) one of two ways.  If the tissue is hardened, he expects that he can laser the tissue out, with minimal chance that the tissue will grow back.  If the tissue remains soft, cartilage can be taken from another place in Luke’s body and grafted into his airway, for an airway reconstruction.  This will firm up Luke’s airway and help it to stay open to allow for breathing.  Either procedure should allow Luke to breathe without his trach, although I don’t know how soon after surgery we should be able to decanulate.  I don’t know if it would be immediate or a gradual thing to give us time to make sure tissue doesn’t grow back, etc.  Until then, we’re just going to do what we’ve been doing as far as Luke’s care is concerned.  We’re going to continue getting nursing care, making sure that Luke can use his PMV all the time (not taking it off whenever he gets stressed), and allowing him to grow and catch up developmentally as fast as he can. 
I was pretty impressed with how the hospital handled Luke’s recovery.  Usually, kids go into the Post Anesthesia Care Unit (PACU) after surgery.  Since Dr. McClay knew that Luke is primarily a heart baby and has had a tough history, he arranged for Luke to bypass the PACU and go directly to the Cardiac Intensive Care Unit (CICU) to recover.  This unit is, for all intents and purposes, just like home-sweet-home CHSU (Congenital Heart Surgery Unit) at MedCity.  The staff was very attentive to Luke, helpful to us, and allowed us to take as big a part in Luke’s care as we wanted (we even ended up writing part of Luke’s discharge summary since they rarely send a patient home from that unit).  I had been worried that since the staff didn’t know us, that they wouldn’t allow us to suction Luke, etc., and we would have to wait for the staff to do everything.  This wasn’t the case at all.  I was comforted by their friendliness.
Luke did well coming out of anesthesia.  He was expectedly fussy when he woke up, but holding and rocking, mom’s signing, and VeggieTales helped quite a bit.  He was sitting up quicker than after all of his other broncs.  We had a bit of trouble weaning him of oxygen.  Luke’s secretions were really thick and bloody (sorry if that grosses you out), and he had very little reserve when suctioning.  Every time we’d suction, he’d desat.  Once he went as low as 34%. 
The staff was a little nervous to allow Luke to go home after a desat like that, but our nurse advocated for us after he saw David’s and my skill in taking care of Luke (using oxygen, suction machine, pulse oximeter, etc.).  Luke got stronger and stronger and stopped desatting so far when we’d suction.  By the time we left he was only desatting to the low 70s% after a suction even after we’d weaned him completely off of oxygen.   By 5:30, the discharge papers were written, and we were rolling Luke down the hall to freedom.   
We got home and got Luke settled.  Mercifully, our night nurse offered to come in early so we could all rest after a really long day. 
So now, we wait.  We plan on enjoying our holiday season while we continue to care for Luke as we always have.  We are holding out the hope that with the arrival of spring and Luke’s second birthday that we’ll get to celebrate with a big ol’ decanulation party.  We are thankful that the procedure yesterday yielded some answers and a vague plan.  We continue to ask for your prayers for patience, wisdom, and endurance, and as always, Luke’s continued safety and improved health.  Thank you for your prayers yesterday and every day. 


Rachael, David, and Luke

Monday, November 29, 2010


Luke has been out of the OR since about noon. He did great all through the procedure and coming out of anesthesia. He's awake and fussy off and on. We should be able to take him home later this evening if we can wean him off oxygen. I'll update everyone on the results of the broncoscopy in a note tomorrow.

Wednesday, November 17, 2010

Small Emergency

So... Luke didn't exactly pull his trach out...
For months, especially when his speaking valve (PMV) is on, we have been trying to keep Luke from pulling on his trach.  Sometimes he pulls at it frantically to try and get the PMV off.  Lately, he's just been pulling on it, and when the filter (called an HME - Heat/Moisture Exachanger) comes off, he likes to put it in his mouth and hold it between his teeth.  Makes him look like he's smoking a cigar.  It's difficult to relay to him the seriousness of the matter when you're cracking up at the way he looks with that thing in his mouth.  
This evening, I was drying my hair, with Luke sitting in his bouncy seat (yes, sometimes I can still keep him contained in it for short periods) since he was still sleepy from his nap. David was still at work, we were alone in the house.  When I turned off the hair dryer, I heard a strange whistling noise coming from Luke.  It wasn't the same whistling that he makes when his trach is out (during trach changes), nor was it the whistling he makes when his HME comes off or he needs suctioning.  I looked over and my heart leaped out of my chest.  I couldn't see his trach protruding from under his chin like I normally can.  I knelt down to look more closely.  He hadn't pulled his trach out, but he had pulled it apart.  He separated the trach in two from pulling on it so hard.  (See picture below).  
Normally we have trach ties on his back-up trach so it's ready to go in case of an emergency.  I dropped the ball on that this week.  The trach was where it was supposed to be, but without ties on it.  I rushed and set Luke on the floor of his room, tried to put one tie on the trach and just gave up.  Luke was starting to panic and turn a little gray.  Anyone want to guess who else was on the verge of panic??
I kept my cool. All I could think was "He's got 2 minutes without oxygen, and he's still breathing.  I've got time to do this."  I didn't take the time to swaddle him or put the other tie on (turns out I put the first one on backwards anyways).  Changed the trach without really even thinking about it, and got the ties on and fastened around Luke's neck.  We're both fine, although a little rattled.  Luke was pretty mad that we had to do trach care twice tonight, but I think he's over it.
I just wanted to share that I'm proud of myself for doing our first emergency trach change, by myself none the less.  Thanks for your prayers (and your cheers!).  

Anyway.  Just thought I'd share.

Above you can see a picture of Luke's broken trach. The pieces are completely separated. The right "tube" portion of the trach is the part that goes inside Luke's trachea. The perpendicular part is the part that lays against Luke's neck (or lack thereof). On the left side is the extension part of the trach that holds the opening away from his neck so we can access the opening. The opening portion is the part he separated (on the far left). You can even see the coiled wire popping out (I'm glad it didn't cut him!)!

Saturday, November 6, 2010

Halloween 2010

*thanks Aunt Rachel and Uncle Blake for sharing your pictures!