Rewind

How did we get here? What happened?

Jenson appeared to be in great shape as we were discharged Saturday (except for the odd dirty looking hands and toes). I researched some potential causes for "ashy hands" and one is extremely dry skin so we have been loading him up with intense moisturizer.

Sunday morning when Doug brought him downstairs, it was obvious he wasn't feeling well. He just stared into space when you would call his name and after about 5 minutes said he needed to go "night-night". He was in bed the entire day and vomiting on and off. We called several times, but his symptoms appeared to be nausea related so we all assumed it was a continuation of the feeding issues.

Monday morning he was still staring into space but his right eye was also drifting. We knew something was wrong, but we certainly didn't anticipate a brain issue. The BMT (bone marrow transplant) team immediately got us in to a CT Scan and less than 15 minutes later told us the CT scan showed blood. They admitted us to the ICU. We are thankful for the quick action of the BMT team as the doctors believe the blood was fresh so probably ruptured Sunday or maybe Monday.

The doctors told us several things could have caused it: low platelet levels (which comes with transplants), or a lesion in his brain area that weakened and burst, or some kind of small fall that wouldn't impact most people. We will never know the real cause because the only way to find out would be to open up his brain and investigate - clearly not going to happen unless brain surgery is needed.

So here we are. Today Jenson's eyes are focusing a little better. He is still nauseous and throwing up on and off. The ICU doctor told us given he is focusing a little bit better, Neurosurgery wants to wait to do another CT Scan until either tomorrow of Wednesday unless something else happens. Apparently stable is good for the time being. Our best hope is it will heal on it's own over the next few months and won't rupture again.

The BMT team is going to do the FISH test every week now due to his "sluggish" counts to closely monitor whether engraftment results are improving. If they aren't over the next few weeks, bone marrow transplant #2 is coming our way.

This whole thing is so overwhelming (to say the least). Just when we thought we were hiking our way up the summit, another avalanche hit. We are still trying to dig ourselves out and hoping everyone will be ok.

Today I am focusing on what is most important - making sure Jenson knows he is not alone and is loved. We have been snuggling most of the day. It is amazing laying next to him with his little hand in mine. He put his head on my shoulder, and I put my cheek on his soft bald head. I think it has helped me as much as him.

Kristin