Thursday, June 30, 2011

My baby boy can't breathe properly

Blessed are the parents of a healthy baby. Blessed is the baby.
But parents of a sick child understand greater just how blessed parents can be.
- Torkona

You always hope that your newborn baby is going to born healthy.  It is one thing that I worried about greatly prior to my boy being born.  With my wife having a few issues during pregnancy (see our birth story), we always hoped for the best.

And he was born healthy.  He came out a beautiful colour, screaming his face off.  Totally perfect.

A few weeks at home, he starts to make striding noises, struggling for breath.  We get him checked out by our pediatrician just to see what was going on, if we were anything other than overly worried parents.

We find out, yes, he is struggling breathing a little bit.

My son has got Tracheomalacia

We are told that his struggle is likely to be what is called Tracheomalacia, a condition that is common in babies.  We are told that we require further tests just to make sure that it isn't anything else and assured everything is going to be fine.

Add a week or so from our visit to the baby doctor, I am holding my precious young fella in my arms, just trying to settle him.

He has a spill, a few hours after a feed.  Yep, spews on himself.  Nothing too much out of the unusual, he spews all the time!

This time however, he struggles greater for breath.  Every 20-30 seconds he is unable to breath.  His struggles increase and he gets more and more restless.

He goes limp.

He's limp only for a few seconds, but its enough to freak our shit out.  This is too much out of his ordinary struggle to breathe.  We need to get him some help, so an Ambulance is called.

Thankfully, it only takes about 10 minutes for the Ambulance to arrive.  Of course, he is fine by now, but we still want to get him checked out.  Off we go to Hospital.

The waiting begins

So we're sitting in hospital with him daily.  I never want to be anywhere other than by his side.

He does well, breathing well and sleeping well.  This is because he's started on oxygen to help get all the air he needs.

We soon find out that he will need to go home on oxygen as well, perhaps even needing it for his first year of life.  Hopefully it won't be as long as that, or any longer.

Waiting for further testing is excruciating.  Eventually we find all his X-rays are fantastic.  Yes, he does have Tracheomalcia but he seems to be swallowing his feed well nonetheless.  Still, a camera scope will be required to have a look down his windpipe to confirm for certain nothing else is going on.

Great.  It requires sedation and we are very nervous about it.

The day the scope comes, we are very nervous.  But when it is finally time for him to be wheeled away, we aren't too bad.  We give him a kiss and cuddle and take time out to try to relax and chat while he has the test done.

My wife and I return to his room early to find he is already back and looked after by our usual nurses.  We thought he'd spend his recovery in intensive care, but he still kinda is getting the care he needs.

After the alloted time that he is supposed to recover, he still hasn't gotten any better.  He is struggling to breath after his "procedure" and the nurses are getting worried.  His windpipe is so inflamed, he isn't doing very well.  He isn't in the right ward to get the correct care and we are getting worried.

He is pumped up with lots of oxygen, he has a mask put in front of his face, he has adrenalin to try and reduce his inflammation.  We are freaking out thinking that he might stop breathing in front of us.

There are about 20 different doctors, nurses, ambulance officers in the room. This isn't helping.  My wife and I are both pale, stressed and scared.

Then one of the doctor's that did the scope decided to tell us how the procedure went during all that is going on.

The doctor casually says "Your son has got vocal chord palsy".

Our son has got Vocal Cord Palsy?

Say what? Vocal chord palsy?

My wife cried.  I dry heaved and went paler than ever before.

I immediately thought the worst.  Doesn't palsy means 'doesn't work and never going to work'?  Does that mean he's never going to be able to talk?  He's never going to be able to laugh?

What a stupid time to tell us what is going wrong.  Our son has 20 people in our room looking after him, helping to keep him in this world, helping him breath.  Like we don't have enough going on!

Anyway, eventually, he starts to improve, but not enough to stay without 24 hour care and constant nurse attention.  So he gets moved after 6 hours of us, yelling and arguing that he needs the proper attention AND FAST.

We get there eventually and after 48 hours, he is back to being in better health.  That was the worst day of my life though.  Baby boy has got no idea what is going on, but after over a year of trying to have our little boy in our lives, we are lucky we didn't have an even worse day than we did.

Anyway, that day has passed and we now at least know what is wrong with him.

And after (thankfully) clear MRI scans to find out why his vocal chords aren't working, we are finished our tests and are off home after about 3 weeks.  We are setup with our oxygen bottles and he is now doing much better.

Yes, we've been back to hospital a couple of times since then, just to double check that he hasn't got a cold (due to a few new noises), but he is fine and back home we go.  Unfortunately, we will surely be back again due to his issues that he has, that whenever he might have a cold he needs to be checked and looked after.

For now, we're told that he is likely to grow out of both of his conditions, his Tracheomalacia and Vocal Chord Palsy.  There is a chance though that that he might not grow out of it, we really aren't sure about it.  But with all his screaming he does, I can't see how his vocal chords AREN'T working!

But I can tell you what, every smile we see is precious.  And we are waiting to hear his first words with a million times more anticipation than any parents before us.

So it's been tough, but if you would like to help us out with our growing medical bills, we would be ever so grateful.  You can contact me via and even click the donate button below.  I'm sure to flog whatever you like via this blog for any donators :-)

Thanks for all your wishes via Tork's blog, Twitter, Facebook and email.  I love them all.

But we'll be right :-) And so will our strong little lion boy. He'll be roaring in no time.

- tork