Monday, November 18, 2013


It is Monday night on the 9th floor. I am eating dinner from Panera Bread, and watching the Voice with Jacob.

Jacob's colitis is furious. I don't know any better word to describe it. The stool has its' own life and will, and Jacob's body has no other way than letting it flow. Colitis is not without pain. It hurts every time he has a bowel movement, and you can see on Jacob that overall he is not feeling great. I had a two hours window this afternoon where I didn't do anything but helping the nurse to change his diapers and at the same time giving him a bed bath in between diapers. The stress on Jacob's body is evident.

Jacob's myoclonus is also acting up. If you put your finger in Jacob's hand, you will feel his rhythmic myoclonus at all times. Right now, his myoclonus has taken over his face, especially his mouth, cheeks and eye lids. I can only imagine how it would feel to have your face rhythmically move at all times, and you have no control over it. For Jacob, it also makes it so much harder for him to handle his secretions when his face is constantly moving. After talking to Dr. C., we do think his myoclonus is acting up because he is just not feeling great. It could also be something we see due to his seizure medication Phenobarbital finally being at an all time low level for Jacob. We have drastically decreased that medication over the last week due to very high levels in his blood. We are tonight exploring different options to see how we can get his myoclonus under control.

Tomorrow afternoon, it is time for a care conference. The big discussion on the table is endoscopy or not. I had to find the post AT A CROSSROAD from last year when we were gearing up for a care conference discussing endoscopy, broviac and TPN. Care conferences are a great forum to get everyone on the same page. Care conferences are at the same time exhausting. You would not call all Jacob's core doctors into a room, if you didn't have a big topic to discuss. I do feel better today than a year ago about our discussion tomorrow, but I also know that there is no straight-forward decision. We are going to have to weigh risks and benefits, and all get on the same page. I know we have our two strong women Dr. E and Dr. C at the table with us as well as Jacob's GI doctor. It is such a difference that Jacob now has a GI doc who has followed him for a year vs. last year when we had to deal with a new GI attending every Monday morning.

So as we go into the care conference to make decisions tomorrow, we hope we can find clarity to do what is best for our boy once again.

Love from the 9th floor,

Jacob & Maria.


  1. Maria, I wished you didn't have to see Jacob going through all this all the time (and of course I wished Jacob didn't have to go through it, my sweet warrior) :(

    Muchos besos y fuerza,


  2. Ro, thank you so much! Take care, Maria.