Laryngomalacia = The Pits!

What a week.  In the past few days, Luke has gone from a baby that squeaks when he breathes, to a baby with major oxygen problems, to an ER patient, to a pediatric surgical patient, to the PICU for recovery.  WHEW.

So, for those of you who have had the opportunity to hang out with Luke, you know that he is a squeaker.  Since he was born, he has squeaked when he breathes, a result of a condition called Laryngomalacia.  We were told that it is very common condition among bigger babies and is a floppy voice box (epiglottis) that causes a squeak when he breathes.  They told us that 9 times out of 10 babies simply squeak for a while, grow out of it, and move on.  Simple as that right?  

Well, after a few weeks of the squeak, we saw an ENT doctor, who put him on an anti-inflammatory drug to reduce swelling and looked at his throat to see evidence of severe issues.  Dr. Hamaker (who is awesome by the way) observed him for about six weeks to see if it would get better, and ultimately decided that we needed to rule out any major issues with a sleep study.  This would allow the doctors to monitor him overnight, and watch his vitals to make sure the squeak wasn't causing any issues because it was limiting his oxygen or making him restless at night.

So, in the spirit of being as much like Dad as possible, Luke got a big fat F on his sleep study - he went through hundreds of periods of "desaturation" during the night (or periods where his oxygen levels were dipping below what they should be).  Out of the blue, we got a call on Tuesday afternoon letting us know that while it wasn't quite an emergency, Luke needed to be admitted to the hospital the next day for some procedures that would allow the doctors to investigate why he wasn't getting enough oxygen and confirm that it was related to the laryngomalacia.  Ultimately, their guess was that it was, and that Luke would have to have surgery to fix it.

After waiting several hours with Luke in the hospital, Dr. Hamaker finally came in and let us know the plan - they would put him under general anesthesia, and then a GI doctor would check his stomach, intestines, and colon, a Pulmonary doctor would check his lungs and trachea, and then together, with the ENT doctor, they would examine his upper respiratory tract to try to confirm laryngomalacia was causing the dips in oxygen. If the squeak was in fact the problem, they would go ahead and fix it while he was under.  The fix involved a surgical procedure to make a small incision in his epiglottis to allow him to breathe, even when his floppy voice box fell on top of his trachea.  

At this point, Kara and I were sort of a wreck.  They kept saying it was a minor procedure, and that they did it all the time, and in the worst case scenario, he would have a little snip that would help him breathe.  BUT, they also talked about normal surgical risks that came along with putting a 12 week old under anesthesia, intubating him, making incisions in his throat, and ultimately changing the way he breathes and swallows. Ugh.

So, after a restless night, he went in for the procedure this morning.  It was very hard to hand him over to the surgeons, even though I know they are great, its hard for me to protect him when I'm not with him.  But we did, and walked out to the surgical waiting room.

Now for the good news.  :)  The procedure went great.  The Pulmonary doctor and the GI doctor found no signs of any issues whatsoever (except a bit of mucus that he had aspirated and some normal infant reflux).  Dr. Hamaker and the team confirmed without a doubt that the oxygen deficiency was because of the floppy voicebox, so they did end up snipping the epiglottis, but it went very well, and he is expected to make a full recovery.

We are sitting in the PICU as I type this, with Luke recovering next to us.  He is still under anesthesia, and will sleep until morning, when they will wake him up, check his voice box, and then watch him breast feed to make sure his swallowing is going ok.

The past week has been exhausting and hard, on both us and Luke, but I am so thankful that God helped the little guy get through it with no major issues, and I continue to pray for his speedy recovery.  Thanks so much for the texts and calls that we got from those of you who knew about the situation.

In addition, special thanks to the multitude of amazing doctors here at Peyton Manning Children's Hospital.  Dr. Hamaker (Pediatric ENT), Dr. Maisel (Pediatric Gastroenterology), and Dr. Akonli (Pediatric Pulmonology) and all the nurses and hospitalists have been so patient with our questions and diligent in making sure we were informed and comfortable with what's going on.  This is our fourth or fifth interaction with St. Vincent hospitals (inclulding having a kid, my appendectomy, and this stuff with Luke), and they continue to impress us with their patient care.



UPDATE  (10/20/12 at Noon)

Wanted to give a quick update as to how Luke was doing, because we know that he has a lot of people out there caring about him.

Luke woke up yesterday and his breathing tube was removed around 1:00pm.  He did extremely well, and never even cried.  Even more wild than that was that he was almost silent!  We have been so used to him making noise when he breathes, its really weird to hear him almost silent.  We also noticed that he is retracting much less (his chest is no longer caving in when he breathes) indicating that he is working significantly less hard to breathe.  The doctors said that this was no doubt why he wasn't gaining quite as much weight as he should be - hes basically doing a workout 24 hours a day!

After he woke up, his first feeding was monitored very closely by a speech therapist to make sure that he was swallowing properly, and not aspirating any of the milk into his lungs.  He got rave reviews from his first feeding, and the therapist said he was doing really well - staying interested in the feeding and keeping a nice consistent pace.  He was a bit coughy and chokey at the end of the feeding (which is very worrisome to us because aspiration was a big risk of the surgery he had).  The doctors have assured us that that is just because of the intubation and the swelling from the surgery, and not an indication of problems going forward.

The ENT doctor from Dr. Hamaker's staff just stopped by.  He said that Luke sounds great, and he can hear nice deep breaths going into his lungs.  He did mention hearing some other noises, but was confident it was from the wind pipe being irritated from the breathing tube.  He let us know that he thought it was best if we stayed another night so they could continue to monitor his breathing and eating, and said that Luke was really doing great, considering he started with a potentially life-threatening oxygenation problem.  That was really scary to hear (they've never said those words before...) but we were so so glad that we went in to do the sleep study so they knew how serious the problem was!!

We were very hopeful that we would get to go home today, but that's not going to happen.  We're trying to keep our spirits up, but its tough living in a hospital...we've been here since Wednesday at 7am.  However, we do get to move out of the PICU and up to the pediatric in-patient floor, which is great news, AND we definitely want to stay as long as we need to so that the little guy is safe.

Thanks so much for all the prayers!! We love all of you guys.

-D, K, & L