Trying To Catch My Breath

I can’t believe the resilience, strength and happy nature of Olivia. Over the last few days she has gone through things I myself would find difficult all with a smile on her face. 

It started on Saturday the 20th of March, Olivia started frequently making these high pitched wheezing sounds and it sounded like she was struggling to breath. The odd thing is Olivia seemed completely normal in every other way. The squeaky, wheezy, high pitched sound was happening in all situations. When she was happy and giggling, when she was upset and crying and even when she was just calming sitting playing with a toy. 

I called the free 24hr Health Direct helpline who did an assessment over the phone with Olivia. They told us to take her to the Accidents and Emergency department immediately. We drove to the A&E department at Royal Prince of Alfred hospital and were seen very quickly and admitted into the paediatrics department. The doctors explained the noise she is making is called a stridor which signals breathing difficulty. They held her there for a few hours while they checked her breathing, oxygen levels and gave her a x-ray scan of her chest. The weren’t sure why she was making this noise and suspected she may of swallowed something and it is stuck down her throat. Nothing showed up on the x-ray scan so they referred us to an ear nose and throat specialist at Sydney Childrens Hospital.

We were instructed to go to the A&E department at 9am the next day for what will likely be a endoscopy (where they put a camera down the throat to examine). For this procedure we were asked to fast Olivia from 5am (no food or breast milk past this point). So I woke up at 4.45am gave her a feed and put her back down to bed, she woke up at 7.30am and played on her mat till it was time go. We showed up on time at 9am and were seen by an ear nose and throat specialist. She explained the likely cause of this sound is if Olivia has Laryngomalacia, commonly called a floppy layrx and wanted to perform a gastroscopy. This procedure was performed while Olivia was awake and we had to swaddle her and three of us had to hold her down while they put a camera through her nose and down her throat. It was horrible to watch as a Mother, I have never seen her so hysterical! I mean I get it… would you want a camera shoved up your nose and down your throat?!?! She was screaming during the 1 minute procedure and was extremely upset afterwards. The worst part of it was, I wasn’t able to breast feed her afterwards to soothe her. I just had to walk up and down the halls and sing to her to try and calm her down. The best distraction I found worked was I found a sink and placed her hands and feet under running water to distract her – this worked a treat. She was calm for a moment.. but she was way past her feeding time and nap time so I had to keep her entertained while the doctors explained the findings to me. It didn’t appear she had a floppy laryx and they couldn’t see anything lodged in her throat. The doctor on call was puzzled by this and went to call her superior to seek further advice. She asked me to keep fasting Olivia until she gets back incase we go down the endoscopy path where they will have to put Olivia to sleep and look down through her oesophagus through to her stomach. The doctor came back and said we don’t need to do the procedure today as Olivia seems normal apart from this sound. She scheduled it for Tuesday morning for when her superior who has specialised in childrens ear nose and throat for 10 years and herself can do the procedure together. For the next 40 hours we were just to keep an eye on her and if she has serious breathing difficulty or her lips start turning blue to call an ambulance or come back to A&E. Then it was an awful 40 hours watching Olivia to make sure the situation didn’t get any worse. My husband worked from home and I had some good friends visit to distract me and keep Olivia entertained. 

On Tuesday the 23rd of March Olivia fasted from 2am and we were booked in for the first procedure at 7am. When we got there they checked all Olivia’s basic health information, put her in a hospital gown and we were seen by a Nurse, Anaesthesiologist and the two Doctors prior to the procedure so we know what to expect. They explained the procedure could take up to 1.5 -2 hours and if they find anything and they need to surgically remove/operate they will call me for consent so I needed to have my phone on me. I thought I might be going in with her, at least until she was put asleep but when the Anaesthesiologist came and told us its time he said “does she have separation anxiety? Do you think she will come with me?” I said she should be OK and Olivia happily welcomed the arms of a stranger haha. I gave her a little hug, they took her favourite toy bunny she sleeps with and they took her away into surgery. 

I watched them walk away with her and tried to hold back tears, stood there and stared at the closed doors for some time just in case they would turn back and said they needed me. They didn’t. I didn’t know what to do with myself, I wandered the halls of the hospital with my phone in my hand on max sound level. 

Possibly one of the saddest places on earth is a Children’s Hospital. It’s full of anxiety filled, distressed parents, and Children who are feeling worse for wear. When you walk around you can hear the painful moans of kids who have hurt themselves or the babies crying in pain. Or then you see small toddlers wearing surgical gowns running around smiling completely unaware of what is to come. Then there are the waiting rooms, nervous parents staring at an empty pram while their child is in theatre. I walked to the cafe ordered myself a chai latte and before I could even finish it I had a phone call from them to say they had finished and couldn’t find anything during the procedure that could be causing this noise. 

I sped walked up to the surgical short stay area and found Olivia in a very worrying state. She was trying to be consoled by two nurses as she loudly whined and cryed while arching her back and rolling around with eyes shut. They warned me about this, when babies wake up from general anesthetic it can take some time to calm them down as it is such a shock in the system to be in deep sleep then suddenly be awake. I wasn’t allowed to breast feed her yet as her throat was still numb from the anaesthetic so I just sang to her and walked her up and down the recovery area. She calmed down and eventually fell asleep in my arms. 

After about 30-45 minutes in recovery we were moved to a bed in the ward when Olivia all of a sudden was wide awake and seemed just like her usual self. Happy, crawling around the bed and playing with her toys. She had a cannula in her right hand wrapped up in bandages and a sensor wrapped around her big toe. It took so much distracting so she didn’t constantly try to put both of these in her mouth!

We were asked to stay for another 3 hours for observation to make sure Olivia was ok and I have to say, Sydney Children’s Hosptial is amazing!! In those three hours we had 3 visitors – Two sweet old ladies who had a trolley of presents and gave her some clappers and a beautiful hand made wool hat and Peter Rabit blanket. These items are donated by people and volunteers hand them out. Wow the fact that there are people out there sitting at home hand making these beautiful items for sick kids completely warms my heart.

Our next visitors came while Olivia was crying because they were trying to take her blood pressure, all of a sudden two doctors dressed up like clowns came and waved pieces of fabric and sung Twinkle, Twinkle little star to her! It worked a treat she was so distracted by the Doctor clowns the nurse was able to easily take her blood pressure. Lastly two men from Captain Starlight came and asked if Olivia wanted to hear some nursery rhymes. I couldn’t believe how much support you get as parents with a stocked kitchen full or snacks and sandwiches and if we were there for any longer Captain Starlight had a room where we could go and watch movies and play games. We could even call them and they would come to our bedside and entertain her. For being in such an awful situation and for parents having a sick kid having this support and generosity just means so much. We can’t thank everyone involved enough for this. And we were only there for 7 hours, it would help so much if you were there for a few days or more. 

Olivia had a little nap on me then before we were due to leave the doctors came to check in. Unfortunately this issue is still a puzzle for them, they said it could just be a phase she is going through or she could have some sort of cold with no other symptoms – no idea! But the fact that it doesn’t seem to be bothering Olivia is reassuring for them. Some of the nurses gave me some tips on what to do when she does have spells of stridor. We have a follow up appointment with them in 5 weeks so just told us to keep an eye on her until then. 

It sounds terrible but I almost wish they found something small they can fix, not finding anything is almost harder as now I just have to worryingly watch her make these struggling to breathe noises and just encourage her to get through it. Its been a pretty rough few days with sleepless nights and my mind always going to the worse possible outcome, but I am glad this was taken seriously by the Doctors at the hospital and thoroughly examined. The fact that it is is nothing serious is reassuring.

Has anyone elses child gone through this?

Any tips on dealing with stridor?

Or have you also had a great experience at Sydney Children’s Hospital? I would love to hear your story