Tuesday, September 14, 2010

Port #2

Yesterday Lynlee had her dye study done on her port. We thought it would be quick and simple. I had prepared myself that the port had probably became loose and that she would have to come back for surgery. I try to prepare myself for the worse so if it doesn't happen then I'm okay.

Well our day went a little something like this. By 1:10pm Lynlee was taken away to do the dye study. They told me it would take them 30 minutes at the latest and they would come get us to see her. As she walked down the hallway with them, she was talking away. However, I walked the opposite way with big tears in my eyes. I wanted to go with her. I was afraid she would be scared during the procedure.

About 25-30 minutes went by and the Nurse Practitioner had came out. She said that she Lynlee's port had "malfunctioned" and the catheter was just floating around in her body. That they had to do emergency surgery NOW before any damage was done. I was really in shock. I hadn't prepared myself for this kind of worse. Everything after that happened so fast. The surgeon came out talked about the procedure, I was very adamant about the fact that another port HAD to be put back in. I also had to make sure they had called genetics (which they hadn't) because Lynlee's disorder prevents us from just having day surgery.

By 2:15 Lynlee was already in surgery. She had ate at 10am, but they thought that had given her enough time and they were not taking any chances of the catheter moving. She was in surgery for around 3 hours. They had to "fish" out the catheter which they said was the hardest part, then put the new port in. She was out of surgery by 5:30, and by 6:15pm we had her on her feeds. She was in recovery and most patients were trying to wake up. Not Lynlee she was awake, and hungry, and wanted up.

Shortly after that we were taken to our room. At 8pm they were taking an ammonia. I had again prepared myself that the level might be a little elevated. After all, she had been without her feed including meds for 8 hours, and had just gone through a 3 hour surgery. The level came back at 27. I was thrilled. I knew everything was going to be okay after that point. Her midnight ammonia was 34, and her 4am was 22.. Whew such a relief.

Lynlee was amazing through it all. From the time she left recovery she was up and ready to go until 10:30 last night. She wanted out of her bed, she wanted to play. I've never seen anything like it!

We did find out afterward that they were sending Lynlee's old port back to the company to see if they could research and see why it had came apart.

We came home this afternoon and Lynlee is doing wonderful. She had a nasty cold that is going around and that is our biggest issue at the moment, not the fact that she just had surgery. You wouldn't even know it. She is still rolling down the hallway like always.

Thank you to everyone that prayed for us, that kept us in your thoughts. I don't know how we could make it without our friends and family!


  1. Whew! What an experience! I am so glad that she came through with flying colors!!!

  2. So glad she's doing so well! Kids in general are so resiliant, but I think our kiddos are even more resiliant than most!