Fw: Daniel update -- Great news!!
Topic: Daniel

SeNT: Tuesday, February 01, 2005 4:53 AM
SubjeCT: Daniel update -- Great news!!


I got a great night's sleep last night. (We kept telling Daniel to wake up so that we could have a turn!)
For those of you who only have time for the highlights, I've used boldface type so that you can scan quickly and skip the details.

Saturday and Sunday were rough days. Daniel was somewhat awake and could communicate by facial expression. With the tubes from the ventilator going down his throat he was uncomfortable, but didn't fight them too much.
Saturday's biggest battle was coughing and gagging. As the morphine & other drugs wore off he needed to adjust and had a difficult time. He's on Methadone to ease him over the withdrawal from morphine & Ativan.
Then Saturday night he began having episodes of muscle contractions. They came in waves and reminded me of the labor of childbirth, except all of his body was involved. His pulse would jump from 65 to 130. It was necessary to put his arms in restraints so that he couldn't accidentally pull out any of his lines. Barb & I and his mother & sister took turns working shifts at his bedside. We'd gently massage his feet and hold his legs so that he didn't kick himself right out of bed.
On Sunday the staff began talking about removing his ventilator tube. The Methadone protocol was adjusted so as not to suppress his breathing and they tested him to see if he could breathe sufficiently on his own. The first tests indicated just a bit too little volume and pressure when he wasn't assisted, so they were going to wait until Monday morning and re-test.
During her shift in the 'wee hours' on Monday a.m., Barb noticed that the severity and duration of his contractions seemed to be lessening. As daylight broke, he was almost through and was able to manage himself with only minimal help. Wahoo!
At the shift change (7 a.m.) on Monday they tested his breathing and decided to remove his ventilator! What incredible progress he's made in only a few short hours. I left work and arrived at the hospital at noon. I found Daniel smiling weakly with only a nasal cannula and one IV line; his bed turned so that he could see the two large posters with photos of Daniel's life; the noontime sun was streaming into his room -- now nearly devoid of the forest of medical machines!
The doctor in charge of rehabilitation came in to assess Daniel at 1 pm. Having not met Daniel before he wasn't prepared for the surprise of such an alert young man. Although it was difficult for Daniel to speak because of the recently removed tubes, he did a good job with the assessment questions that the doctor asked him. He's a little slow in responding and has to think out his answers, but did really well. Even got a little creative for the doctOR:

DOC: Daniel, I'd like for you to recite the alphabet, but skip every other letter. Like "A, C,..." Can you do that for me?
DaniEL: (pause) "Automobile, Camaro,..."
Yeah, that's my boy. = )

He's doing so well that they are going to assess him later in the week and might transfer him directly to Advanced rehab and skip the transition to the Medical Floor.

After 18 days of darkness, the dawn has arrived. We're exhausted! But Barb & I have to admit that we couldn't have made it this far without the support and prayers of so many friends (and strangers). And then there's Daniel. I feel like he's been re-born.
Maybe we'll send out birth announcements....