Re: Introduction - Michele

[Guest guest]

Dear : Your family will join our prayer list and continue, Please

keep a positive thought and God be with you.

annette and robert lennon

>From: michelee@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Introduction - Michele

>Date: 31 May 1999 08:28:32 -0000

>

>From: michelee@...

>

>My grandson, Gavin, who is just 6 weeks old today was born with his heart

>on the wrong side. He was transfered to All Childrens Hospital when he was

>2 days old and had surgery when he was 5 days old. His heart was also

>backwards, had an interrupted aorta arch, three major defects, two holes

>and blockage. He also had no thymus gland at all. His surgery took 7

>hours.

>

>He was diagnosed with Di Syndrome and a genetics test proved that he

>did indeed have a large 22q11.2 deletion. After the surgery, and spending

>several days with heart rates of 200-220 in a jet (doctor never expected

>him to survive) he finally converted into a normal sinus rhythn with normal

>heartbeat rate.

>

>By this time, his lungs started popping holes and he had up to 7 chest

>tubes to drain the air from his chest cavity. Again, the doctors did not

>expect him to survive, but he did.

>

>We just received the immune tests results today and as we expected he has

>next to no immune system, I dont have the exact statistics but it was not

>good.

>

>He also had problems with low blood pressure and his kidneys, stays on meds

>for both as well as being sedated and paralyzed with meds with morphine and

>valium as needed.

>

>He is progressing very slowly, and sometimes slips backwards. As I left

>him this evening, his stats showed over 90% of his oxygen in his

>blood but was on about 90% oxygen and on an oscillator, he has been on

>eithr it or a ventilator since birth.

>

>He remains in Surgical ICU and have been told that if he makes it he will

>be threre for a few months and then may go home on a ventilator. He will

>also have severe lung problems as there has been so much damage. Has

>anyone else seen this and had the child survive?

>

>My daughter will not hardly leave his bedside except to eat, pump, sleep

>and occasionally return home to spend time with her 3 year old, who is very

>healthy and his father. She stays at the Mc House at night to

>be close to Gavin, it is an hours drive to the hospital from where we live

>which is FL.

>

>We have had a large prayer chain going from almost from day one. I have

>read most of your introductions and will read the archives but wanted to

>introduce myself since I have joined.

>

>Sorry this is so long.

>In His Arms, Michele

>

>

>------------------------------------------------------------------------

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>http://www.onelist.com

>Visit our homepage and share with us how ONElist is changing YOUR life!

>------------------------------------------------------------------------

>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

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