[tri-med] Re: Pulmonary Hypertension/Tess in hospital

Do any other Trisomy 18 children on this list suffer from pulmonary 
hypertension. Chris (mama to Mari, full T18, dob 8/24/01) I 
remembered you mentioned it, and I looked on your link. What 
medication, if any, is she on for PH.

>As I mentioned before Tess had gone into hospital for a 3 day sleep 
>study, during which they were going to introduce some oxygen into 
>her BIPAP. Well she picked up some bug in Westmead, and Julie 
>brought her home, but she had two dark bloody vomits, and is now 
>back in hospital, this time Mt Druitt hospital. She is under the 
>care of her pediatrician (Dr Amos) who now works out of Mt Druitt 
>(and Blacktown) as they have no children's ward now at Blacktown 
>(more government cost cutting).

Julie asked me were there other children on the list with PH. I said 
I recalled someone mentioning it recently, hence my question. (I 
remembered it was you Chris). Julie did mention to me that viagra is 
one drug they are using for PH.

Karen, I know you mentioned someone else here in Australia (and 
perhaps you can not say her name on line) that had pulmonary 
hypertension. Could you pass on the question to her mother and ask 
what treatment she has been on. I no longer have her email, as I lost 
my address book recently.

I visited Tess this morning, she is on a drip, for hydration, she did 
brighten a little when I arrived. I tagged along to a nice warm bath 
with her to hold her arm out of the water. After that she was 
shivery. She wouldn't eat anything, but did drink some strawberry 
milk. She fell asleep on my lap a few times. She is definitely not 
her self and a bit flat.

So the end result of this is that Tess came home from the first 
hospital where she had the sleep study and the experimental oxygen, 
but did not get the oxygen machine yet. So when she get's over this, 
and comes home, then I guess they will be adding the oxygen. She had 
blood work done at Mt Druitt hospital, but Julie was waiting for 
results to come back. I left about 1pm, and they were not back yet. 
Ian will be taking over from Julie this afternoon.

I will keep you informed how she is going. Those of you who pray keep 
up the good work. Those of you who use power of positive thought keep 
it up too. I am a great believer in BOTH.




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