Surgery is a Go

All of Nathan's blood work came back good. Because of the pain he was having the day and night before they took him for another x ray and ultrasound to make sure everything is where it needs to be. Those results came back normal as well.

I checked on Nathan throughout the day, and my mom said he was in a good mood. He also took a very long nap. They decided to no longer feed him through the J tube, because obviously it is not working. So now he is getting all his nutrients through his IV. Which we have to careful monitor. He was sleeping when I got there, and pretty much slept until about 4:45pm when they came in to take vitals and woke him up. My mom came back up about 6:00pm to help me out, and to bring me dinner. Which was super YUMMY. Thanks mom. Nathan was SO happy to see his grandma. He just laid on her lap played, and took a nap. After she left, we put him in his crib, and he went back to sleep. He got up a little bit later, and was playing with a small enfamil water bottle. He fell back asleep with the water bottle in his hand. It was SO adorable. I tried to take it away, but he wouldn't let go. He slept great until about 2:30am. He woke up screaming and crying in pain again. The nurse came in and brought him some Tylenol. She even grabbed some warm packs to lay on his belly to make him more comfy. He also needed a diaper change, and is still dealing with a bad diaper rash. Once we got more cream on him he felt better. But did not go right to sleep. Instead he played with his pop bottle. He is such a sweetie. Man we love that lil guy.

Okay so now for the surgery info. Dr. Klein (the surgeon) called me at work about 3pm to talk with me about the surgery he scheduled for this Friday. He explained that it is better for Nathan to have it now, not later. He said obviously the J tube is not working, and we have to do something. He stated this is the BEST bet for Nathan. They will also do the muscle biopsy, and they will change the J tube back to the G tube. They are not doing the lung biopsy. He said all 3 would be too much, and he feels the lung biopsy may not be needed. I think I asked him at least 20 times: "Are you SURE he can handle the surgery" Dr. Klein said "YES". We talked about the risks, and that there is a 20% this will not work. Sometimes, it just does not work on certain people, and sometimes things can go well for a few weeks, and has to be re-done. I HAVE to believe this is what Nathan needs, and that this will work!!!! He stated they are not going to do it laparoscopic. He stated for Nathan is it best to make a incision from breast bone to belly button, that way they can really see what they are doing, and that its more gentle and a shorter procedure for him. And they can take the muscle biopsy from the incision sight. Which means they wont cut up his upper thigh. I asked about recovery and he stated that he may or may not go to ICU. It depends on Nathan. 2 or 3 days after the surgery they will try to feed him slowly through the tube. I said, "I know you can't give me a definite answer, but can you give me a approximate length of time we will be here?" He said that it really all depends on how well Nathan recovers. It will be at least a week, but he has seen children who have been there 3 to 4 weeks after surgery. I just pray Nathan can heal quickly, so we can get our little man home. I think I have covered pretty much everything. So the surgery is this Friday (3/27) at 7:30am. The surgery takes about 3 hrs. Dr. Klein did cancel all his morning appointments, so he could do it.

I will keep everyone updated on his progress.