Our Cardiology Appt. - NOT GOOD!!!!!!!!!!!!!

October 29, 1999

Hi all:

Sorry for the mass mailing BUT I am not very happy. Actually I am about to

cry. Went to the cardiologist today for a routine visit requested by

Clayton's ped and metabolic doctor since he has been diagnosed with a

mitochondrial disoder. I of course expected the exam to be normal. Well

first we got there at 9am and of course Clayton would not cooperate and they

could not give him chloral hydrate since he ate breakfast. I made the

appointment about a month and a half ago and really did not want to change

it. THey were great and said come back at one. So we did and they needed to

give him 3 doses of chloral hydrate and then I had to drive him inthe car for

10 minutes befoire he fell asleep - about 2:15pm. Finally did the cardiac

echo and of course something was wrong. The heart itself looked fine - on the

large size of normal for his size but this was ok. Blood flow was normal -

EXCEPT CLAYTON HAS A SECOND AORTIC ARCH - A VASCULAR RING. LOVELY. What

this means is that he has this second arch and it is crossing over his

trachea and esphagus and most likely causing his breathing problems -

strider, and is eating and swallowing problems!!!!! Surprise Surprise. The

echo was very clear showing this and so was the chest x-ray - BUT now we are

going to havwe a chest MRI so we can see exactly what it is impinging on and

then guess what - Clayton will need surgery to correct this. About 3-5 hours

worth. Just want I want for him. I cannot believe this. I go there

expecting everything to be fine and dandy and get knocked down again. I swear

everytime we go for a routine test or exam something is wrong. I just do not

know what to do. BUT what bothers me - the cardiologist feels that this is

one of the main reasons Clayton has problems swallowing and eating and does

not want to eat. IT is not behavorial. I jsut can't take anymore. I just

want to say no more doctors.

Anywaythe only good news was that his EKG is normal.

Thanks for letting me vent and if anyone has any information on vascular

rings and the surgery to coorect them I would love them and anyone who went

through this with their child info would be great.

Thanks.

Love,

Sharon, mom to 3 wonderful boys - Jake (6 1/2 ADD, fine motor delays,

gifted), fraternal twins 2 1/2 - Cole (nda - with the greatest smile) and

Clayton (mitochondrial disorder, g-tube, microcephalic, Nissen, sensory

intergration dysfunction, no real attention span , now most likely a vascular

ring and WHO KNOWS WHAT ELSE)

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