A VERY SICK BOY

Yesterday they found out that Jacob has colitis. He has a very nasty inflammation of his colon. That would explain the blood in his stool. What noone could find out is the cause for his colitis....Everybody was scratching their heads...Everything continues to come back negative.

At the same time, Jacob started to have even more excessive diarrhea. He was loosing more fluids than he was taking in. He was pale, mottled, and his breathing got labored. His heart rate was high, and his blood pressures were creeping up. He was desating as I was suctioning him. Many signs that Jacob wasn't doing well. The attending doctor said that "we were falling behind". Before we knew it Rapid Response Team was called. This is like an internal 911 call in the hospital. A complete medical team comes and does a full assessment. This has happened to Jacob before, so I know how it is when you suddenly have a room full of people all trying to figure out what to do with your child. It was decided that it was time to move Jacob down to the PICU once again.

My friend Karen was visiting with me all this time. As I was watching over Jacob, she literally packed up our hospital room of 2 weeks in minutes! She got everything packed and ready to go, and I could stay with our boy.

As we came down to the PICU, Jacob was put on bi-pap to help him to breathe. He was also receiving fluids, albumien, put on two antibiotics again, and I am probably forgetting something.

Dr. C. came by last night, and we talked about how to move forward with epi, and that we might have to wait a little bit for Jacob to stabilize with his colitis and also make sure that his fluid intake stabilizes. One of the things that you have to test before starting on this medication is your coagulation.

This morning as I woke up, I was told that his blood coagulation was out of whack, and that he needed blood plasma and Vitamin K. Yet another step in the wrong direction...We now have the PICU Team, Neurology, Metabolics, GI, Infectious Disease, and Hemoc involved to try to figure out what is going on with Jacob. Noone knows. That in itself is my biggest worry. If they don't know what it is, they can't treat it. He is also getting a PICC line today, since they need more access than the medi-port.

We have been here before with Jacob. Not exactly the same issues, but that place of complete unknown. We simply don't know what it is that is making Jacob so very sick right now. That thought is with me all the time. It doesn't even leave me when it is time to sleep. Seizures have moved down on my worry list as we're now trying to figure out why and where he is bleeding from, and why he is so sick.

Thanks again for everyone's enormous outpour of support. It is amazing. We never feel alone on this journey. If I don't get back to you all right away, know that we're busy watching over our boy.

Much love,

Maria.