Saturday, March 28, 2009

tube up this morning

Not the best start to the day, but Pads now feels very good having brought his feeding tube up again. The debate now is how long to allow him to not have the tube re-fitted. He had a very bad experience the time before last having it re-fitted and that is giving him more fear now. Some children get to the stage where they can do it themselves but he's some way off that. He was asking if he could have a chat with the play therapist, which is a compliment to her, but that's not an option, nor is the specialist chemo nurse that fitted it with some elan last time.
As unpleasant a conundrum as this is, every time we go in to hospital we meet parents with much bigger problems than ours, either due to complications from a different treatment type or degree of disease, similar treatments to ours but just not going as well as ours (e.g. Pads suffered no infections or swellings after surgery), or the simple matter of location. Even families living in Bridgend, 30 miles away, may have to make the journey on a daily basis.

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