Keri/TP-ICT

[Guest guest]

Keri

The last couple of years of Joey's disease, his enzymes would go up

only slightly, or not at all. In the beginning, sometimes his lipase

was over 12,000 and he was not as sick as at the end when he would

have no elevation at all. He did have periods where he would be pain

free, sometimes for a couple of months. Then when he would have an

acute episode they seemed to last longer and longer with no relief

for his pain. The year before his surgery, he had gone so many

months without eating or drinking, his gall bladder became diseased

and had to be removed. He also had celiac blocks. One worked

beautifully and resolved his pain within 24 hours. All the others

were completely unsuccessful. He did have the intestinal rush after

them, but it resolved fairly quickly. The only thing that kept him

from screaming in pain 24/7 was a constant infusion of Demerol. At

the end, he was using between 700-800 mg per day and still did not

have relief from his pain! He didn't even sleep. This went on for

months at a time. He was very sick when they finally did his

surgery. He had lost a lot of weight and suffered multiple line

infections and clots. He had developed a stricture in his superior

vena cava from all the catheters from his ports so the tip of his

catheter would not stay down where it belonged. It would develop the

clots and they would breed bacteria. Three days before his surgery

he developed yet another line infection and we brought him to the ER

at Children's. He was almost unresponsive and they put him in a

crash bed where his vitals kept dropping. It was terrifying! So, he

was very sick going into his surgery. Within days of his incredibly

difficult surgery, with an incision that went completely from one

side to the other and tubes coming out everywhere he was rating his

pain LOWER than days before his surgery!!! He is now completely pain-

free. We really consider it a miracle. Every day still feels like a

beautiful gift we have been given.

I apologize for the length of this post. We continue to pray for

everyone who suffers with this terrible disease.

Suzanne