Saturday, February 25, 2012

Made it to this next crucial step.. #5

Well not much of anything had happened since the biopsy. Wednesday was the 12th of October and basically we just sat by Isaac's bedside all day. We prayed a lot too. We were hoping for the biopsy to come back negative, but deep down inside we knew what was going to happen. I got up really early that Thursday morning the 13th to go over to the NICU. I usually got there around 6 or 7am. And I usually didn't leave until 2am.. I was there all the time. Sometimes I would go back to the Tree House and only be able to sleep one hour so I would sneak out in the middle of the night and go back to Isaac. And as soon as I got by his bedside, I got so tired. Sometimes I would doze off in the rocking chair. I really wished I was able to sleep there.. I would have gotten a lot more sleep that way. Something about being there and being able to watch over him made me feel calm and able to sleep. I just couldn't be away from him.

I think back on these times and thank God that he was too small to remember any of this and not able to be mobile. As I type this, he is almost 5 months old, being a wild man in our bed. He's sleeping next to me. If he were the age he is now or older, there would have been NO way it would have went down as smoothly as it did.

I took a shower, got myself dressed, and then woke up Jose and he got ready. We said one last prayer and headed over to see Isaac. The walk over there was all of 2 blocks but seemed like we couldn't get there fast enough. We  had no idea what time we would see or hear anything. I was prepared to wait all day. But when we got there, within minutes Dr. Golden the neonatologist came over to talk to us. He said that he had looked at the pathologist reports and it was Hirschsprung's Disease. My heart sank. He said Dr. Acierno would be by, I can't even remember what time he said because all I could think about was what he just had told us, to let us know the plan for his care. We both cried. We were devastated. But in a way relieved because from what we had been told and what we had researched, this was a minimally invasive surgery with next to no life time complications. That's IF he had short segment. If he had long segment we knew he worst case scenario he could possibly have a colostomy bag and have numerous surgeries. We didn't want to jump to any conclusions yet, we wanted to see what she said first.

When Dr. Acierno came by she discussed with us the plan for tomorrow, Friday October 14th. She explained to us that she was almost positive he had only a minimal area affected and she was confident she could do the pull through operation. She said she was going to do a small incision below his belly button and do another biopsy in surgery to find the area that had ganglion cells. She wanted to make sure the area she was attaching to had a lot of healthy cells. Then she would perform the surgery to take out the affected area of his intestine and make the healthy connection. She didn't have a time frame for surgery because it all depended on what she saw when she got him in there. Tomorrow would be a really big day because that was the day we got ALL the answers. We asked her a whole host of questions. Mainly we wanted to know when we could bring our sweet baby home. She said anywhere from 5 days at the least to 2 weeks, just depending on what she saw when she got in there, how the surgery goes, and how fast he bounces back. She said typically it's around 5 days. We were ecstatic to hear that. We had a glimmer of hope.. This was the best news we had heard in a long time. Now to mentally prepare ourselves for tomorrow.. Uh if we could ever be prepared for something like this. TOMORROW WAS THE DAY. One step closer to bringing our baby HOME.

No comments:

Post a Comment