Dylan/ Still problems

[Guest guest]

Hi all, Obviously I have emails to catch up on but here is what's up. Yes we are

home form NIH. But all is not so good yet. He is stable for now. The first day

of the study they found he was in Bradycardia ( low heart rate). The echo found

some problems with some of the arteries, I can't remember exactly what right

now. They said things didn't look good and thought maybe the leads were bad and

they would run the test again later. On day 2 they transferred us to another

hospital to have an MRI of the spine and an MRA of the Aorta, We were waiting

for another girl to come out of the MRI that was there with Marfans and the plan

was to take us all back when she was done. But, then Dylan collapsed holding his

chest and crying in pain. They rushed him over to ER and put him on the monitors

and he was in bradycardia again and rarely got out of it. His HR stayed between

38 an 60, mostly staying between 40 and 52. They called up to the MRA and had it

read immediately and it was fine. They found a 1st degree AV block. I still have

to look that up to see what that means. They are undecided as to why he had the

chest pain, but I thought I was losing him right there before my eyes. God I was

so scared, and I still am. Something else kept blinking on the nurses station

that I still don't know the meaning of, I kept saying: ST INF HI. I know it was

for him because of the room and bed #. Any way they said he was stable to travel

home. Thank you all for prays and thoughts when Lana sent out the email that he

was in trouble.

I'll write a separate email about what they found so far about him in the NIH

study. And another about how to get in the study.

Thank you all, I was so scared, but knew I wasn't alone.

Cindylouwho/Cindy C.