More Questions Than Answers

I don't even know what to write right now. So much has happened, is happening and no one agrees to what it means or how to fix it or if it even needs to be fixed. For someone who likes answers and to stick with one track, this is absolute torture. Add the fact that all of this revolves around my son's life and I may seriously go insane. Below is a very bare bones account of the last week. I can't bring myself to type out all of the details.

We've continued to fight to get Linus's fluids in the right range. He has the teeniest of windows between dehydrated and overhydrated. Now he's started having wacky situations where his body and veins are dehydrated and his heart and lungs stay congested with too much fluid. How do you even begin to treat this??

After his echo on Wed showed some "slight improvement" it was decided that he was stable enough to be treated on the cardiac floor instead of in the ICU. He was there for a day and a half before things went awry. He was really fussy so Trina had them come give him Tylenol thinking it may be pain. He started screaming and wouldn't stop. Tria buzzed for a nurse, but no one came. Then Linus stopped moving and turned blue. Trina ran into the hall and yelled for help. His heart rate was in the 70's and his O2 sats were in the 80's. They gave him oxygen and he came around. They decided it was a "vagal response." The charge nurse called upstairs to the ICU to let them know what happened and they said they'd come get him. Ten minutes later he was back in the ICU.

Soon after he got there, he had another episode that mirrored the first. They stabilized him again and started a blood transfusion after determining he was anemic. Linus started going downhill a third time, but didn't stop. He was crashing. His heart rate reached the 30's and I'm not sure how far hit sats plummeted. They called codes, grabbed the crash cart and started CPR. Trina, there alone, was kicked out. She was hysterical when she called me. I was on my way, but still 45min out. I couldn't believe this was happening. I got to the hospital before anyone had updated Trina. It ended up being an hour and a half before we were told he was stabile and we could see him. He was under an air filled heating blanket, on a ventilator and hooked up to more tubes and wires than ever before.

Since then he's had several more of these episodes, but being on the ventilator and hooked up to meds keeping his heart rate up, they haven't been able to progress as far as that big one. Everyone has a different opinion on how his case needs to be handled and no one seems to agree. It's maddening. According to today's echo, Linus is worse off now than he's ever been and it seems that no one has a clue why. I'm hanging onto my sanity by a thread.

Right before his transfer out of ICU.

Looking pitiful in his new room.

Looking out the window is almost as fun as watching TV.

Back in the ICU after he crashed.

Geting his 4th blood transfusion in 2 days.

Looking peaceful.