Thought I should share a photo of Rose’s face the way it should be. Every week we need to change her ventilation equipment. She hates having her face touched but for the five minutes it takes to do the change, now her Nasal Gastric feeding tube has been replaced by a gastrostomy tube, we can see her face!
Rose’s paediatrician thinks she’s adjusting well to her gastrostomy. We have steadily reintroduced full 3 hourly feeds over the last 10 days or so. She lost a bit of weight but hopefully she’s gaining again now.
Rose’s ventilation is being weaned with a view to her having only 1/2 a litre of flow by the time Wednesday rolls around. We began weaning from 4 a couple of days ago and we are at 2.5 now. If she continues to tolerate this lesser ventilation support then on Wednesday we go to the sleep clinic for a sleep study.
The sleep study results will determine what happens next for Rose. If she doesn’t need ventilation support when she’s awake we can get everything off her face. I feel like suddenly there may be a way forward. One that I actually want to travel! But it’s frightening to think that knowing my hope could turn to disappointment should any complications arise.
When Rose’s face is bare, I’ve been given the go ahead to work with her to overcome her breastfeeding aversion. It’ll be a huge challenge and success is unlikely but it feels important to give it our best shot.
This journey is taking it’s toll on me now. I’ve had to rely heavily on lots of people for support this week and I know that this has a knock on effect for their immediate and their extended families so thank you to the people supporting our supporters!! We are so fortunate to have you all there in the wings!!!