November 23 2012

Well, Helen's meeting from Holy Cross went well. A physio and and OT visited. They looked at all her notes and then examined her. The physio was quite surprised, after feeling the contracture in her right arm, that her legs were very flexible and straight and her left arm was not too contracted. The hospital have already increased her Baclofen and the physio have recommended that Helen has Botox now, rather than waiting. She has got to be fitted for a new set of hand splints because of the swelling in her hands. They also talked about putting her hands in plaster cast but don't want to do that if they can avoid it.

The Holy Cross have asked for a wheelchair to be ordered for her, sooner rather than later. They want her to be in a position to be mobile as soon as possible. She will be participating in all sorts when she gets there!!

The isn't a room available at Holy Cross but this could change at any time, with not much notice.

Her father seems a little bit happier about her going there. He thought that she would just vegetate in a room with loads of old people!! There will be a lot of older people there but we also have to make sure that she gets plenty of visits from her friends and us.

I just want her to move on with her treatment. The staff have given the hospital staff a few more ideas to help Helen. She has got up to 4 hours of free tv a day from the tv providers; she has a DVD/tv to watch and I have taken a few new dvds in for her. I have been playing music off my iPad for her and showing her photos. She seems a bit more alert.

When I went in to see her this morning, she was really sweaty. It was running off her. They had to change her catheter because it was blocked. Sample sent off. Another potential UTI!! After the change, her temperature settled down and the sweating stopped. We are now wondering if this might be her indicator of pain or discomfort.

I asked about her high heart rate. It is about 85/90 when she's asleep and 125/150 when she's awake. Her blood pressure is fine, her fluid balance is ok and her temperature is ok. Luckily she is young and her heart can cope with it at the moment. It might be that control centre has been damaged. It might resolve, it might not.

Anyway - that was a bit of an essay but quite a bit has gone on in the last week.
Helen's Hope: November 23 2012

Friday 23 November 2012

November 23 2012

Well, Helen's meeting from Holy Cross went well. A physio and and OT visited. They looked at all her notes and then examined her. The physio was quite surprised, after feeling the contracture in her right arm, that her legs were very flexible and straight and her left arm was not too contracted. The hospital have already increased her Baclofen and the physio have recommended that Helen has Botox now, rather than waiting. She has got to be fitted for a new set of hand splints because of the swelling in her hands. They also talked about putting her hands in plaster cast but don't want to do that if they can avoid it.

The Holy Cross have asked for a wheelchair to be ordered for her, sooner rather than later. They want her to be in a position to be mobile as soon as possible. She will be participating in all sorts when she gets there!!

The isn't a room available at Holy Cross but this could change at any time, with not much notice.

Her father seems a little bit happier about her going there. He thought that she would just vegetate in a room with loads of old people!! There will be a lot of older people there but we also have to make sure that she gets plenty of visits from her friends and us.

I just want her to move on with her treatment. The staff have given the hospital staff a few more ideas to help Helen. She has got up to 4 hours of free tv a day from the tv providers; she has a DVD/tv to watch and I have taken a few new dvds in for her. I have been playing music off my iPad for her and showing her photos. She seems a bit more alert.

When I went in to see her this morning, she was really sweaty. It was running off her. They had to change her catheter because it was blocked. Sample sent off. Another potential UTI!! After the change, her temperature settled down and the sweating stopped. We are now wondering if this might be her indicator of pain or discomfort.

I asked about her high heart rate. It is about 85/90 when she's asleep and 125/150 when she's awake. Her blood pressure is fine, her fluid balance is ok and her temperature is ok. Luckily she is young and her heart can cope with it at the moment. It might be that control centre has been damaged. It might resolve, it might not.

Anyway - that was a bit of an essay but quite a bit has gone on in the last week.

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