Whilst I was in hospital after having Logan, the Respiratory and KITE Team arranged for Dylan to do a sleep study without his oxygen.. unfortunately this didn't go very well!
For a number of reasons Dylan's heart rate was very high. His oxygen levels were fine but there was concern he was having to work too hard to maintain them, hence the high heart rate. However, he was upset at night most of that week even with the oxygen and seemed to be reacting badly to his chemotherapy. The night they did his sleep study was the worst of the week and he was awake upset for hours so they didn't get an accurate result to use really.
So we repeated the sleep study again last Wednesday night.. we only just officially got the information today! Dylan's oxygen saturation over night was perfect, the only slight concern is that his reserves are still a little low, particularly on chemo week. So the decision has been reached to leave him on 0.5ltr for another 8 weeks and review before he starts nursery BUT only when he needs it now and overnight! This is a major step for us and means that unless doing anything strenuous or if he gets tired or unwell, he can have a tube free face and we don't have to follow him around as much!
Dylan also went to visit his nursery last Thursday for a stay and play session. He is due to start in September and we are awaiting funding for an extra staff member to help and support his additional needs such as oxygen (if he needs it then for any reason) and in case of emergency. Daddy took him to visit as I am still not 100% post csection should he have wanted lifting or picking up at any point. He absolutely loved it and didn't want to come home! He didn't really interact with the other children though which we have noticed he doesn't do since all of this has happened so hopefully nursery will do him some good.
I imagine I am going to be an emotional wreck in September.. even him going for an hour on Thursday got me a little bit emotional as of course just three months ago we never even dreamed we would get to experience all of this with him! Every milestone is filled with such joy but also sometimes sadness as we can't help but replay the events of Easter weekend over in our minds and feel that pain again, still raw and still very real.
Myself and Mike are clearly suffering from a degree of PTSD from the whole experience. Little things set us off like watching him interact with his brother or dancing and singing to his favourite songs.. we can't help but think about life without this little superhero and how close we nearly came to it. How long is this going to last? These flashbacks of that weekend, the imagining of how things may have turned out.. Months? Years? Or will it always affect us in some way. I guess that is the unknown factor and only we can face this and work through it together as a family now.
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