Saturday, November 8, 2014


It is Saturday evening. Dinner, a glass of wine and a movie sound pretty good to me right now. I better not stay focused on that thought for too long, since it is not going to happen. This Saturday evening will be spent up on the 9th floor at Children's together with Jacob. We just got transferred from the PICU, so I know it is going to be a long night telling our story multiple times, and making sure all new medical orders will happen tonight. I also have a boy who has slept a lot today, so I am sure Jacob is ready for a party, especially with two nurses on board tonight. I don't see a lot of sleep in the near future.

Jacob decided to break in nurse Shereen right away (and she did excellent). Yesterday his tummy was not agreeing with him, and Jacob was in obvious pain. Pain that throw Jacob into a long seizure. He decided to come out for a little bit, and then he went into status epilepticus. It was time to call 911. Jacob's breathing was definitely shallow from all the medications, and it sure scared the paramedics. They bagged him in the ambulance, and took him to the nearest hospital. It is funny how you react in crisis. It was not until I was sitting in the car late at night that I realized that they had bagged him all the way to the hospital. I had my eyes on the bag the whole time, but I couldn't take it in. The first question when we got to the hospital was if I wanted them to intubate Jacob. Gosh no! I told them if they had concerns about Jacob's breathing, we should get a bi-pap on him right away. The bi-pap did its' job.

Jacob went downhill at Good Samaritan. His blood pressures and heart rate dropped and he couldn't hold his body temperature. I knew we were dealing with adrenaline insufficiency once again. We got Hydrocortisone on board, and things started to look up again. Dr. C. talked to the attending, and we got a plan in place for his seizures.

I know some of you are going to appreciate this. My throat was so dry after talking non-stop to doctors and nurses, so when I finally was able to grab my water bottle I didn't take a close look and instead took a big zip of water. To my surprise, I was drinking Jacob's formula with extra fiber, and it sure wasn't tasty! We always put his feed in a water bottle for school, so I simply grabbed the wrong bottle. I am so happy our boy doesn't have to taste that thing! It sure gave the nurse a good laugh.

After many hours at Good Samaritan, we finally got transferred to Children's. Once settled in the PICU, we felt we finally had a plan in place. We were told by the attending that they wanted Jacob out of the PICU asap due to the enterovirus still going around. This nasty virus has landed many healthy children in the intensive care unit with breathing and neurological issues.

24 hours after we arrived at the PICU we are now up on the 9th floor. It must be one of our quickest PICU stays in history. 24 hours later we know that his tummy caused the seizures. His tummy was as large as a balloon both yesterday and today. We're back on antibiotics for his gut, a higher dose of steroids, and watching his stool. Both Joakim and I are thinking we are nearing a colitis flare up. Luckily, his GI doc is attending this weekend so hopefully we can come up with a plan before we leave.

This sure has been a long week. We started out the week with wishing Gemma farewell. Joakim and I got to sneak away to Breckenridge and spend two relaxing days together. We had a new night nurse start with some bumps in the road. We had a fun successful fundraiser at Whimsy Paint & Sip for Miracles for Mito. Thanks to all of you who came out and painted with us.

The highlight of the week was to see Jacob perform in his first school musical. The 2nd graders performed famous fables, and Jacob got to present the morale of each fable. It was a proud parent moment despite Jacob deciding to sleep through the whole performance! One of his classmates was concerned about Jacob sleeping and hoping he would wake up, so he could "stay on task". Thanks to his teacher, Jacob was able to still do his part. And yes, way too many pictures were taken...


And guess who came to watch the big performance? Jacob had no idea! He just wanted to sleep...

We're hoping we are soon home again, and we're hoping we're wrong about Jacob starting a colitis flare up. Time will tell.

Stay tuned. Love, Maria.


  1. I hope you're all home soon, and hoping with you it isn't a new flare up.

    1. Thank you, Deana! No colitis so far...