Monday, March 14, 2016

Day +160

Today marks three weeks since Raul's cardiac arrest. Unfortunately, he has yet to regain most abilities he had before, but he has not been off his sedatives long so this could still happen. Now that we are back on the BMT floor, we do get occasional smiles for things he finds funny (like the intro. song to the show Sarah and Duck). Some of his joints have gotten a bit tighter, so we are working with PT and OT on stretching them. 

The ICU psychosis seems to have passed, and he now just gets upset when he is uncomfortable. His abdomen has seemed to be bothering him the past few days so we have stopped his gtube feeds again, and have been venting his gtube. We did get another ultrasound today just to check, but it looked okay. If the symptoms persist we will look into doing a CT scan. 

His heart rate was low for a few days, and now it is back to normal but his blood pressure has been high. Both of these are likely medicine side effects. We got an EKG the other day that was stable. Raul had dialysis today, and we are hoping to be able to stick to our four day a week schedule.

We had a care conference last Friday, and are still planning on placing the PD catheter for dialysis before going home to Boston. It is better to have it placed here where they are more comfortable with EB patients. We do not know yet if we will have to transfer hospital to hospital, or if we might be able to go home outpatient. The time frame right now should be to have the catheter placed in 1-2 weeks, and go home in 1-2 months.



  1. Oh Raul! I want you to get well. You are loved.

  2. Thinking of you both with love and prayers