The boy who squeaks

When Luke was just a few days old, he had to go on oxygen.  No one thought anything of it, because he was a 33 week preemie.  It was pretty impressive that he hadn’t already required any oxygen.  So, when his oxygen levels were “swinging”, they put him on a tiny bit to stabilize them.  He also was a little noisy when he would breathe.  The NICU doctors at Primary Children’s informed us that due to him having down syndrome, he most likely had a floppy airway.  And that was all we heard.

About this same time, Luke developed some congestion. They contributed it to being on oxygen and having it dry out his nose.

A few weeks later, we had a random episode while in the NICU where Luke went from being totally fine one minute, to requiring nasal CPAP shortly later. All of this, with no definite explanation, just the possibilities of what it could be.

Fast forward four months to where Luke is still on oxygen, and proves he still needs it every time we do an over night study.

About three weeks ago, we discovered Luke had a cold while getting tested for the reason he had a fever. (He had a UTI at this time, but we did a complete work up to make sure we didn’t miss anything else.) After a week of Luke still being really congested and retracting pretty decent, his pediatrician sent us to see an ear nose and throat doctor.  (He had assumed that we had seen one while Luke was in the NICU at Primary Childrens, but it fell through the cracks).

As soon as the ENT doctor walked in the room, he said “Wow, you make a lot of noise for being such a little guy!” HA! Welcome to Luke.

He did a scope, where he took a camera, went up Luke’s nose and looked in his throat at his voice box.  He then reviewed it with me.

Luke has something called laryngomalacia.  This, explains EVERYTHING. It explains the noisy breathing.  He said it could very well be the reason he’s still on oxygen, because it can cause sleep apnea. It can also cause acid reflux to be worse.  It can cause him to retract all the time.  It can also cause him to go into respiratory distress as well.

So, what is laryngomalacia you ask?  Well, since Alex and I have pretty much taken a crash course to become doctors, I found this video that explains it PERFECTLY! (I was so happy I found it, because Alex was unable to come to this appointment with us, and apparently my explanation of what the doctor told me was not good enough for him.  :D)

https://www.khanacademy.org/science/health-and-medicine/respiratory-system-diseases/laryngeal-conditions/v/laryngomalacia

So, if you’ve met Luke and thought to yourself, “Man! He is a noisy kid!”   This is why! This is why he is squeaky, and sounds terrible! And don’t worry, I think that myself, and so does everyone else! When he is sleeping and super quiet, I tend to worry a little bit more! Haha.

So, what the plan with this?

Well, there are two options.  The typical one is to let them grow.  A good majority of kids tend to outgrow this overtime.  However, Luke can’t be ordinary!  When the doctor did the scope on Luke, he told me he was very surprised that he wasn’t worse than what he was.  Meaning, his throat and the laryngomalacia looked pretty bad.  He switched Luke to what is supposed to be a better acid reflux medication to see if we could get a better control on his reflux.  He said that with the acid reflux, it can cause more irritation to the voice box, making the laryngomalacia worse.

So, we tried the new medication.  And, it didn’t work.  AT ALL.  In fact, I felt like we went ten steps backwards.  I gave it a valiant effort, even his pediatrician said that.  We gave it ten days to kick in and start working.  And, let me just say, my life has been horrible the last week.  His reflux has been SO much worse.  So, we switched back to the medication he was on previously, and please say a prayer that it will kick in soon and I will have my happy baby back.

We follow up with the ENT doctor the end of June to see how the reflux is being managed.  Ha.  Most likely Luke will need a surgery called a supraglottoplasty. But, maybe Luke will surprise me and be totally fine when we see the ENT again.  One can only hope. 🙂

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Life as we know it (The updates)

Over the past couple of months since Luke has been home, our lives have been crazy to say the least.  A lot of changes have taken place, but I think we are finally getting settled into our “new” routine.

Luke had lots of doctors appointments when he came home.  Most of them were follow ups from the NICU.  We’ve been to his pediatrician about every other week for weight checks to make sure he is growing as he should. We also saw ENT, but that’s its own post. 🙂

We followed up with cardiology regarding the ASD that they saw on an echo previously.  Cardiology cleared him for now and told us we don’t need to follow up for two years, unless an issue arises that we would be worried about something cardiac.

Urology and nephrology are going to be an on going thing, but luckily, we don’t have to follow up as often as we thought we were going too.  We won’t see nephrology again until September when they will check his kidney function levels and make sure they are still working great.  We will see urology again when he is close to being one.  We will then repeat the same tests that he has already had (A VCUG and a renal scan).  They will then compare and decide on a plan of action and go from there.

We then have early intervention who sends an occupational therapist out twice a month to work with Luke and help him to hit his milestones.

Because of all the crazy, and the possibility of Luke needing a few surgeries, him randomly getting sick and needing a bunch of testing done due to UTI’s because of his kidneys, we decided it would be best for me to stay home with him.  So, when the school year finished, I said goodbye to my dear friends at Canyon Crest and parted ways with Provo school district. I have since been hired to a transcription job at home, with flexible part time hours.  This will help us reach our goals a little sooner, and still give me the opportunity to be home with Luke and make it to all of his appointments.

The company Alex was working for is closing their Utah campus.  He was laid off from his job on May first.  He then took a job working for Ebay.  While he was looking for jobs, he applied to be a 911 dispatcher with Utah Valley dispatch, and has since been hired to that job.  The dispatch job works out a lot better for our family, so he will be done with Ebay this week, and start that new job this coming Monday.

Life is crazy, but we wouldn’t have it any other way.  Hopefully it will settle down a little bit and we can enjoy a little bit of our summer!