more trouble

2/4 Not much going on. David had some company pretty much all day. I think it wore him out.

2/5 I asked for everyone's understanding--David didn't want visitors today. He's really crabby and tired and still in a lot of pain. They started him on the antibiotic that would target the bacterial infection. Larry (my husband/David's dad) surprised us and came up early and had breakfast with us. David had to go to the bathroom and I kept opening the door and checking on him to make sure he was steady on his feet, didn't need help wiping, etc. He was short and crabby with me and said that what really annoyed him was that he couldn't go the the bathroom without my interrupting him every four minutes. I could have my feelings hurt but I know that he's sick of being sick. Sick of no privacy. Sick of everyone looking at his butt, being naked, having tests and shots and awakened every five minutes....

So Larry left and David took a long nap, from noon to 4:30. We were going to watch the Superbowl together. I brought Starbucks back to the room and David went to the bathroom. He was happy because they took out his IVs and he could go in the bathroom without that IV tree. He went in and I left the door open a crack and peeked and watched him sit down. It always takes a long time for him to go, so I sat down with my laptop and was writing a note to someone on CSN. I heard a funny noise and I jumped up and yanked the bathroom door open and David was on the floor of the bathroom in a full blown nightmare seizure. I cannot tell you how terrible it was to pull that bathroom door open and see him helpless on the floor thrashing and foaming and bleeding. I was beyond horrified and terrorized. I pulled the cord and a nurse asked what was wrong over an intercom. I screamed "Seizure!" The nurses and doctors came running in. They helped hold him on his side to keep his airway clear and they put a pillow under his head. I was holding his shoulder and his hip from behind to keep him on his side. He must have been seizing a while because he had a lot of blood and foam on his mouth. He was having trouble breathing again. The seizure started to abate and then ended and the doctor was asking him questions and David was answering. Then he started to turn his head to the side and I said "he's seizing again!" David started with the jerking of the head way over to one side, twitching his mouth, blinking his eyes really fast, then he started thrashing all his limbs with so much strength and foaming at the mouth. He could't breathe and he was making terrible sounds and his eyes were bulging out and his face was scarlet. They put an oxygen mask on his face but he wasn't drawing air in. The doctor called a code blue and I heard feet pounding in the hall. The seizure went on and on and I said out loud through my tears, "God! God, help him! Rescue him! Rescue me!" It was so hard to hold him on his side and the seizure would not stop. He started turning blue. A nurse ran in with a hypodermic and they had me come out of the bathroom where I had been holding his head up and the nurse took my spot and gave him a shot of Adevan (msp?) in his chest. I went out in the hall and started calling my family to come. After I called Christy and Larry, I went back outside of David's room in the hallway and I could see through the glass wall that they had taken him out of the bathroom and he was lying on the floor of his room, naked, and they were putting IVs in, calling out vitals...his heart was over 170....and they had a bag and were squeezing air into him...ventilating him? They put him on a stretcher and rushed him to ICU.

I was afraid his clots had come loose and he was having a pulmonary embolism, but the nurses said that it didn't look like an embolism. I asked if he'd had a stroke or a brain bleed and they said that it was possible and that they were taking him for a CAT as soon as they had him stabilized in ICU.

They did the CAT and no bleeding, no changes from the one done two weeks ago Monday, when he had those two seizures in his apartment.

David came out of the seizure several hours later. He was unresponsive on his left side but he could squeeze their hands on the right side. Several hours went by and then he was squeezing with both hands. The neurosurgeon said that the antibiotics that they gave David can lower the seizure threshold and they think that he had a seizure because of the antibiotic that they gave him. So needless to say, he's off that antibiotic and on another one. The infectious disease doctor feels terrible since she's the one who prescribed that antibiotic. But she was trying to treat the bacterial infection as aggressively as possible so they could clear it up and get David back on chemo. I told her that she did exactly what we had wanted her to do and that no one saw this coming. It's easy in hindsight to say that we shouldn't have used the antibiotic....but we are past that now.

So right now we are in ICU waiting for a room to open on a regular floor. David had an ultrasound to see how the clots are doing. We have't gotten those results back yet. I'm uptight because the hospital is full and David might have to go to a double room and they don't know if I can stay with him. I told them I would be staying if I had to stand in a corner and they said that they may not allow me to do that. I am not getting all hot and bothered and ugly because I think that David's medical team will work something out for us. They all feel terrible that we are going through so much. I look like I should be the one in ICU. My hair is sticking up from the way I slept on it in the ICU waiting area, and I have huge dark circles and bags under my bloodshot eyes. I look awful! And I could care less....

Christy stayed with me last night. She slept with me in the lobby of the ICU waiting area too. It's a bad setup because the elevators are right there, and the door to the ICU with an alarm on it is right there too. It must have awakened us 15 times last night.....

The medical team came by today to see David. The dr who called the code blue was with them. I thanked him for his prompt and efficient care and for calling a code blue and not wasting any time. I asked him how long David seized for and he said five to ten minutes...more like ten minutes. I've heard and read that a seizure longer than five minutes is considered life threatening.

Since David had those two bad seizures two weeks ago today, I'm not sure that just taking him off the antibiotics will prevent more seizures. How am I ever going to take an easy breath again in my life? How can David ever be left alone? How can we even dream of him living on his own in his apartment?

Still calling out to God....

Love and blessings,
Cindy in Salem, OR
David said he felt the seizure coming on and he sat/fell down in the bathroom on the shower's handicap chair. He said he tried to call me but I didn't hear him. He pitched forward on his face and didn't remember anything beyond that. He called me and I didn't hear him. I didn't hear him.......I can't forgive myself for not being there when he needed me.