Brighter Days

The last few days have seen a positive change in little Daniel by means of a “paddy plan”. This is a plan that has been drawn following Julie’s discussions with the staff here on PICU as to the best way to deal with Dan when he “throws one”. This consists of increasing his oxygen levels when he starts to get upset, with Danny’s lungs being smaller than normal he needs a little help; lifting him up as he is just a baby and needs to be cuddled. These and some other items have helped to reduce his episodes right down, now they will not always stop him when he’s on one but it certainly limits them down. On Saturday night we returned home for Julie’s first overnight stay since she first went in on the 13th June, some 5 months ago. As you can imagine the experience was all about leaving Daniel and spending some time with Tomas, so we left Tomas with Julie’s brother until 23:30 when we returned home. Julie didn’t sleep that night for fear of getting a phone call from the hospital telling her something had happened but the call never came, in fact I called at 06:30 on Sunday morning and he had been fine, it was nice for Tom to have a little slice of normality again. Later on Sunday morning, around 10am, Julie got a call from the hospital to say that Danny had had a desat but as I was on my way she decided to stay at home with Tom. When I got to the hospital they said that his trachy tube had gotten blocked after the physio had been to see him which is what had caused his episode. The doctor explained that the secretions had built up almost in layers making the tube smaller in effect and then when he coughed up a “plug” this just blocked off the tube completely. Despite this Julie and Tom enjoyed, if enjoy is a correct way to describe it, a day at home together albeit Tom playing and Jules cleaning they were together for the day. And at the end of it you could see what a positive effect this had on Tom and how much better he was for it. This is something that we are going to work towards but obviously this depends on Danny so time will tell for now.