Laryngomalatia · Uncategorized

Caring for a Child with additional needs

So I guess due to my PND I have not been very open about our miracle boy Leo. While born premature after being discharged everything seam to go smooth he was meeting milestones and slowly putting on weight. The one thing that was wrong which I had never experienced before was reflux this was new to me and my heart broke with his constant screaming in pain and projectile vomiting. He was also making this strange noise while feeding and I felt like something was wrong.

He was put on reflux medications but it did not seam to improve. Laying on his back in bed I would wake to him gurgling his vomit and rush up to turn him on his side to clear his airway. One thing we had was a sound and movement monitor on his bassinet but never did I think that it would ever go off you know its only there for reassurance.

Until one night it went off I got up and his lips were blue straight away I picked him up and he started to breath. He use to go blue when he was feeding as suck swallow breath is quite difficult for premature babies. IMG_3459

This was something I bought up with the Maternal Child Health nurse and was told that it was probably just a fault. So reassured I kept on with live loving Leo.  Until it happened again and then again and then one day I had him in a Stokke Newborn seat next to me and I noticed him stop breathing go blue around his lips and grey. I quickly undid the belt and picked him up and he started breathing again.IMG_3494

Concerned that it had now happened more than once and I had noticed it I called our Paeditritian we went into see her I mentioned the gasping for air the projectile vomiting still even with the reflux medication and the noise he made while feeding which I had a video of so showed it to her right away she called the ENT for an urgent referral.IMG_3597IMG_4603

We went to see the ENT not long after and the Dr did a scope said it looks like he has a floppy larynx and he organised for RCH at home to do an Oximetry test. IMG_5568

While this was done urgent for some reason even though the nurse said the results would be done urgently as they had it set not to go off unless his oxygen saturations went below 60 SPO2 I told the nurse I was up most of the night as the alarm went off all the time to check him and turn off the alarm. We did not receive the results until we got an urgent call on October 3rd.IMG_5574IMG_5576IMG_5578IMG_5580IMG_5582

It was then we were told that our little man had a serious problem that he was dropping his SPO2 levels so low we are lucky he is not a SIDS baby. I thank the lord that we purchased the Anglecare sound and movement monitor if we had not had this he would not be with us today.

We were told that he has a rare condition called Laryngomalatia and that he needs an urgent operation the next day that we needed to come into the hospital to sign the forms for the surgery the next day we were called by the intake nurse and told what we needed to do to prepare Leo for surgery and asked to come in at 7am. The ENT told me to google SUPRAGLOTTOPLASTY which I did thats the operation that he was going to have.

I can’t believe that we were about to go through this we had to get my brother to fly in to look after our other two kids and get them to school hubby had to get time off work it all happened so fast it was like a tornado. We were told that he would need to be in ICU after the surgery which I was quite scared about so we barley slept that night.



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