Thursday, July 10, 2014


Tuesday was a big day for our boy. It was time for surgery. It was decided back in April that Jacob needed a new set of ear tubes. The ear tubes are preventing his ear cyst to grow. The cyst will otherwise eat at his ear until he looses his hearing. Dental also wanted to extract his four upper loose  teeth. Jacob has a tendency to aspirate his teeth, so it seemed like a good idea.

It was an early morning with a lot of preparation. Meds had to be given at different times throughout the night prior to surgery. Feed had to  stop at a certain time, followed by pedialyte to a certain time. We made it to the hospital right at 6 am.

We didn't get too far into the surgery preparation before the anesthesiologist came down to see us. He wasn't sure the surgery would happen after all...We had mentioned that Jacob had a cold, and that was enough for possibly pushing out the surgery a month...After a long discussion with dental and anesthesia, the surgery was on again!

The surgery itself was about an hour, and Jacob did really well. It took him a little bit longer to wake up this time than last, so we were happy he was monitored in the PICU for the day. He was breathing on his own right away, and never seemed to truly be in a lot of pain. Dental was also worried that the bleeding from the teeth extraction would freak him out, but Jacob handled it just great.

Joakim and I were hanging in the PICU for the day as Jacob was resting. The chaplain of the PICU always likes to peak in and make sure we are doing fine. This time he was not fine with me simply saying that we are doing ok. He was starting to ask about Jacob, and then the question came: "how is it that Jacob ends up here so often?" So, I had to explain his mitochondrial disease, and what it means to Jacob.
"How can you handle it?" I thought the question was odd coming from a person who works in the PICU. I am sure he didn't get the answer he had expected, but it is the truth. "This is our life. We have lived this life for 8,5 years. Things that might not seem normal to you have become part of our daily lives."

And this is the truth. Two stays in the PICU within two weeks is something we just do. We pack our bags, we live on no sleep, and we stick with our boy and make sure that he has what he needs. I dread using the bathroom in the PICU, so I plan my visits carefully as I have to go. I tell Jacob's medical story over and over again. I tell the nurse every 12 hours what comforts him, why his heart rate is elevated, why he is uncomfortable. We know the drill.

I understand that looking in on our life from the outside it might look overwhelming and hard, but reality is that this life also has a routine after eight years. And in the middle of suctioning, PICU bathroom breaks, and the desire for sleep, is our boy. Our Jacob who fights every single day. He knows no other life, and he gives it 100% every single day. And that is how we handle it. I was told three times before 9 am yesterday that Jacob was lucky to have me. Three times I was saying that I am the lucky one who has Jacob. He puts everything in perspective, and he makes sense to this life we call ours.

Tonight, Jacob is sleeping in his own bed again. I can always see that he knows he is home. He falls asleep right away. There is no place like home.

Love, Maria.