Laryngomalatia · Special Needs

Supraglottoplasty – Surgery Day

After we went to the hospital the next day his surgery got cancelled as they had no surgical beds in the PICU and as its his airway thats the issue this was a necessity so we went the following week with the promise that it would not be cancelled they had a guaranteed bed for him. Being so young he was first cab of the rank which made things easier as he was starting to get a little hungry.

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The above pic is of my gorgeous boy before his surgery. I think he had been crying a bit as he was hungry hence the red cheeks. Daddy was with us and we took turns trying to calm him. We were taken into pre surgery where he was weighed and measured and had his little tiny identification bands on, he also had his observations taken. IMG_6394

We managed to get him to sleep for a bit before he was taken for surgery. Mummy got dressed up in her clothes because I wanted to be the one when he went to sleep.IMG_6397

In Anaesthesia he was wrapped nice and tight and given some gas to make him go to sleep. He was pretty good and did not fight it too much I gave him a kiss and told him I would see him later. We were then shown to the ICU and told they would come and get us from the parents room so we went and got some lunch and sat and waited. I was so nervous as I did not know what to expect three hours later they came and got us they told us they were having troubles trying to settle him as he was in a large amount of pain so it took them a while before they could come and get us.IMG_6398

This is the pic of what we walked into an ICU room with all these monitors and our little man with a breathing tube down his nose monitors attached to his chest, a canal in his foot.IMG_6406

His nurse introduced herself to us and we were told what was going on with him how the surgery went and how he is going now. IMG_6407

I have to admit for me the scariest thing was seeing he pain in his eyes he looked terrified and as a mum I could not do anything to help him which broke my heart. His face was so swollen as a mum you don’t want to see anyone in pain or like this.

 

I thought id try and explain what Laryngomalatia is and in the best simple words I can describe it is floppy tissue in the larynx which causes the airway to be obstructed so essentially an upper airway defect and the supraglottoplasty is the surgery that is performed to try and correct it they try to trim some of the tissue but not too much so as it damages his vocal cords. Not everyone who has laryngomalatia needs surgery it depends on how bad the laryngomalatia is that determines surgery. Leo had the worst type Severe Laryngomalatia.IMG_6408

I was told that I could touch him which of course I did and I proceed to stroke his head and had my hand on his chest to try and comfort him in a way that I could as he could not be picked up. They had him wrapped up like he was in a little nest.IMG_6419

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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