9:00am – I walked in at 8am to find a nurse stationed at the bottom of Dom’s bed… Guard duty, to stop him from escaping and running a muck. We fed, bathed him and changed his bed. Once we see the respiratory team, the plan is to downsize his trache tube and then block the tube off to see how he copes. We will work more on playing with the CPAP mask today because there is a good chance he will need it tonight. If all goes well today and tonight, they will take the tube out at 9am tomorrow morning. Here is a link to the decanulation process: RCH Tracheostomy Decanulation Process
10:30am – the respiratory team came around and gave us the go ahead to downsize Dom’s tracheostomy tube. We took his shirt off and didn’t realize at first, that Dom’s trache had become dislodged in the process. It was only out for about 10 seconds but Dominic barely batted an eyelid. We quickly put the smaller tube in and monitored him closely for a while, to see how he was coping. He had already started working a little harder than normal, so we decided to go slow. We put his speaking valve on and didn’t observe a change. Then we capped the tube, which essentially was just blocking the tube with a piece of tape. His breathing became noisy and rattly and he started working even harder but he was still maintaining his sats.
11:30am – Sats are at 100% but his breathing is very noisy. He’s ok when still and calm but he’s starting to work very hard and his sats start to drop when he moves around. We will keep watching him closely.
12:30pm – Dominic is less noisy after he coughs up his secretions and still maintaining his sats well. He has stridor, which makes him sound very noisy, exactly like Seb sounds when he has croup. He is still working quite hard but has had no major desaturations, not even when upset. He is doing a fair bit of breathing and clearing of secretions through his stoma though.
2:00 – Dom’s asleep and maintaining his sats, however he is working very hard, to the point that he has really worked up a sweat. It is difficult to hear and watch him struggle but we will persist for as long as he is safe. We’re quite anxious watching him. We will be able to assist him with CPAP when he sleeps but we wonder how well he will cope if he becomes unwell with a respiratory infection, which he is prone to because of the bronchiectasis.
2:45pm – As Dom drifted into a deep sleep, he started obstructing and desaturating, which woke him up. We suctioned him and since then his breathing has sounded clearer and less difficult. The stridor started to return as the secretions built up again, although he will learn to cough them up as time goes by. We removed the tape from the end of the trache tube and placed it over the end of his portex speaking valve instead. This seems to be working much better and will be easier to remove if he gets into trouble. We will wait to see what the respiratory team want to do about his obstructing during sleep. Dom is safe so we’re not ready to give up yet. We’re pretty certain now that if the trache does come out, he will need CPAP. We will have to work hard at getting him to tolerate it if we’re going to decanulate successfully in this admission.
6:00pm – Dom is now doing quite well. He has been capped for 7 hours and has had no major issues while awake. He is doing some good coughing and has had very little stridor since he woke up. He is having difficulty breathing when on his back for a nappy change and is less keen than usual to lay this way. Dr Massie came by to check on him around 4:30pm. We reported that he was doing great while awake, but had a lot of difficulty while asleep. He suggested we see how he goes tonight and if he struggles again, we should uncap his tube so he can get a good night sleep. He will assess him again in the morning. After he left we played with the CPAP mask again. Dom is making progress with this too. He is now pushing the mask firmly against his nose, although he’s not terribly keen on wearing the hat and mask together yet. We’ll keep playing with it and rewarding him with bubbles, since this is working well.
We have used our time today to help a few more of the paediatric registrars prepare for their clinical exams. We did another long case study (1 hour) and a short study (7-8 minutes). Dom wasn’t bothered by either one and now there’s a few more doctors who have met a child with BWS. The nurses are ordering Indian for dinner and asked if we wanted to put in an order too. With no time to venture away from the hospital at all this week, we took the opportunity to eat something better than cafeteria food and McDonald’s.
9:45pm – Dom had been breathing quite well while capped all afternoon. At around 7:30pm he needed to stretch his legs, so we did a few laps of the ward. He ran from one end to the other happily but by the fourth lap he was starting to puff and the stridor returned. It got better after a rest but returned again as he was starting to get tired. We started the oximeter and set up to record, expecting that he wasn’t going to be able to last very long. I headed back to the room and we decided that it was best if one of us stayed with him overnight. I headed back to RMH as Grant tried to get Dom settled.
11:00pm – Grant returned to RMH after deciding that it was best to remove the cap and let Dom sleep. He was struggling to breathe and gave Grant a look that told him he’d had enough. As soon as the cap was removed and he was suctioned, he settled off to sleep. They will do another finger prick first thing in the morning. Today has been difficult, however Dom has still managed to make some positive progress.
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