Thursday, February 25, 2016


I am sitting down and starting to lower my guard slowly. These last couple of weeks have been a whirlwind. After I had a good conversation with Jacob's anesthesiologist yesterday, I felt better about today. We had the A Team lined up for Jacob's planned surgery.

I brought in Jacob's lucky blanket today. Jacob received this blanket in 2009 when he was seriously ill with sepsis, pneumonia and pseudomonas. I have a picture from that time with Jacob smiling as he finally got extubated and having his lucky red blanket. As I pulled it out of one of Jacob's drawers, I realized how small the blanket is seven years later! Our boy has grown a lot.

As we were getting closer to surgery time today, I did feel I couldn't do much by standing around. As Jacob was in surgery, I was working away. That kept at least part of my mind away from the operating room. We had been told surgery would take an hour. As we passed the hour mark, I was starting to wonder what was going on. We could see on the board he was still in surgery. After an hour and half, the OR nurse called out to let me know they had started the surgery more than an hour late. Jacob had had one of his famous blowouts, and it had taken the surgery team half an hour to clean him up! It also took a good half an hour to get an IV line in Jacob. Despite the delays, Jacob was doing fine in the operating room.

GI came out first. They performed an endoscopy and colonoscopy today. After having done additional blood work, they are not sure Jacob has pancreatitis. They know his lipase is elevated, but the pancreas itself doesn't look inflamed and the additional blood work is not showing a clear pancreatitis. They are very happy no ulcers were found today. So, once again we're not clear what's going on with Jacob's stomach. They performed several biopsies, and we will find out more tomorrow. GI would like to once again start feeds slowly and ramp up over the weekend. We shall see how it goes. Joakim and I are still concerned that the same thing will happen as last time. We get Jacob back on feeds, go home, and then his stomach issues start up again. We have expressed our concerns, and hopefully Jacob proves us wrong.

The medi-port surgery turned out to be a little more complicated than they expected. His old port was not in the best shape and very deep, so the whole surgery did take longer than they had originally thought. It is beautiful to see the new port working without issues!

Our boy did very well transitioning from breathing tube to his bi-pap. It took him a little longer to wake up than they had expected, but he also had been under anesthesia almost the double time from what they had expected. He did wake up in the recovery room, and we could see he was in pain. With pain medications on board, he has been in deep sleep. He just woke up, and is now cuddling with Sarah. Jacob is sure our rock star.

I am so relieved. I was seriously worried about putting Jacob under anesthesia, especially with him being sick right now. We also had a couple of emergencies during our last hospital stay, and I was trying to rally myself for this to possibly happening again. I am so happy we have had none of that today. We're back on the 9th floor as the sun is setting over the mountains. It's a breathtaking view.

Thank you, thank you, thank you for all the love and support today. We have had messages from near and far all day long. At one point, I had to excuse myself to the nurse for trying to keep up with all messages :-

There will be wine tonight.

Much love, Maria & family.

1 comment:

  1. Thank God the surgery is safely passed!! Praying for Jacob's continued healing, and for you, Sarah and Joakim too, for strength & peace of mind & heart. Love from NJ.