In August 2019 we brought Chloe for a staycation at RWS Sentosa to celebrate her younger brother’s birthday. Thanks to a friend who was a member of RWS, we got to stay at Equarius Hotel for 3 days 2 night free. During the staycation, we got to swim with Chloe (probably her last time enjoying swimming with us) and Cayden in the private pool just outside the room.
We enjoyed good time brining the children around the island and it was a nice to see that Chloe enjoyed the staycation with us.
Everything remained well for the next few weeks until she was admitted for her regular ERT in mid-Sept. She started having a fever and the doctor decided to swab her for any infection. To everyone’s surprise, she was test positive for Pertussis (whooping cough aka 100 days cough) and this was almost impossible because all of us were vaccinated against this condition in Singapore. Before we could find a reason, her condition got worsen and within the next few hours, she ended in the ICU! She was having acute respiratory distress and her oxygen saturation couldn’t hold up. In the end, she had to be intubated in the ICU. Over the next few weeks, Chloe remained intubated and the doctors were trying their best to remove the breathing tube from her. After the first try to remove the breathing tube went unsuccessful, the doctor did a bronchoscope on her to remove some plugging in her lung. We went for the second try and this time, it last her 7 hours before she was re-intubated again.
This time the topic of tracheostomy surfaced again…. For the next 2 weeks, we had few meeting with all the doctors looking after her the past 10 years. The option was either we give it a 3rd try or we proceed straight to doing tracheostomy. We were struggling to make the decision because as parents, we want her to have a quality of life and we see have a trachea tube might take away this quality. Mummy had a coffee session with Chloe’s primary doctor and it was heart warming that we have a kind doctor, Dr Tan Ee Shien, who is willing to walk with us care for our emotional struggles. Finally, we came to a joint decided to go ahead with tracheostomy for Chloe. It was very painful but we know this is the best choice to keep her safe. We thank God for a good 10 years without a trachea for Chloe and deep in out heart, we know she will have to go through it eventually.
We started to prepare Chloe for it by involving the Child Life Therapist in introduce a trachea tube to her. Chloe seemed receptive to this surgery and the need for her to have it. But the night before the surgery, while mummy was talking to her again she started to say no and cried until she felt asleep. It was so painful for us to watch and daddy left the ICU without saying good night to her because he couldn’t bear to see Chloe crying… The morning came and we walked her to the OT where mummy went in with her to keep her calm. It was a smooth operation and she was out quicker than we thought.
While we were still worried about Chloe’s emotion, she showed us that she had accepted the trachea tube by asking us to do suctioning for her via the tube. It was a big relief to us. Chloe was transferred to HD Ward after she was swabbed negative of Pertussis to continue with her recovery. It was also the time where our family start to learn on how to care for the trachea tube. It was a new skill that we have to learn and hopefully this will be the last invasive intervention that we have to put her through.
Both daddy and helper rotated to do cleaning, insertion and removal of the trachea tube on Chloe under the supervision of the Homecare nurses. There was no problem with the caregiver’s training but we do run into a problem of keeping the right humidification for Chloe.
We celebrated Chloe’s 10 years old birthday at HD ward. It’s really a blessing that her attending doctors and nurses joined us for the celebration. Daddy decorated the bed side and thanks to Club Rainbow and KK Hospital, she got nice cakes on her birthday. Once again Chloe showed us her fighting spirit and will to live. She has reached a milestone where no one has ever dare to set for her! She keeps us going and she is a true inspiration for all that we are doing!
Upgrade of Equipment
Chloe’s existing BiPAP ventilator, Vivo 40 from Brea, was not certify to be used for 24 hours and also under the new protocol, patients with trachea have to be supported by Respironic Trilogy ventilator. This BiPAP is not cheap and our family has to pay $6,250.00 (after Homecare funding) for it. Furthermore, we have to purchase a brand new humidifier with heated tubing function to ensure the air is ‘wet” enough for Chloe. The humidifier costed us a further $1,100.00 and apart from the new equipment, we have to purchase the connecting tube with heating element at $40.00 per set. Due to the new setup of the humidifier, we have to use a milk bag to drip the water into the container and that added to extra cost for us 🙁
After a good 80days in the hospital, we were finally good to bring Chloe home!