Tuesday, 28 October 2008


Today Little Fish had an appointment with her neurosurgeon. We arrived at the hospital and squeaked into out patients just a couple of minutes before she was due to be seen. To be greeted with a big notice informing us of a 45 minute delay. Joy.

Sitting in the waiting room, we met the gastroenterology liaison nurse, who heard my concerns about LF's gastrostomy site and suggested a different course of treatment, one we've not tried before - she thinks the problem could be fungal. Has to be worth trying.

We then found the respiratory liaison nurse, who was able to give us a new bonnet for LF's Nippy ventilator. Very useful, as she vomited all over the old one last night, and it fell apart when I tried to wash it. Ooops.

As she dropped a shiny new bonnet into my hands, the neurosurgeon called our names, and, armed with LF's 18 inch high stack of notes, he staggered ahead of us showed us to his office. A good-ish appointment; he is concerned that the scoliosis may be related to the Chiari Malformation as well as to the dislocated hip and general paraplegia. He says it is inevitable that she will be in pain from her spina bifida (it had honestly never occurred to me that this would be painful before) as well as her scoliosis, sitting upright in her wheelchair, and a whole heap of other things. We'll be looking at regular pain medicines again then. He doesn't want to operate which is excellent news, he thinks her hand function is marvellous and much better than he had predicted given her various diagnoses, and he wants to see us in a year.

We then left and caught the lift downstairs to our bus. Walking past the WRVS shop, we bumped into the girls' paediatrician, who did a quick informal review of all their care. That's another phonecall saved.

And once in the bus, the phone rang, neurology registrar phoning to check up on Mog after her recent drugs tweak. We now have an appointment with Mog's neuro set up for next month.

There are advantages to becoming well known by the hospital staff!

1 comment:

Kathie said...

What a blessing you are to those children. And what a busy time you have. Blessings from Costa Rica


Blog Widget by LinkWithin