After 121 days she is finally out of Intensive Care...

Sara moved out of ICU today. We moved to Rossmoor Care Center in Walnut Creek. To say today was a long day would be an understatement.

As soon as it was evident that it was really going to happen today the entire mood around Sara, and her mood, changed. It was happy because she was moving to the next level of care, but a little sad because she was leaving. Many nurses and staff members came by to give her hugs and kisses, rub her arm, hug me, and wish us all well. Some staffers could barely hold their emotions, but everyone was hopeful for her continued journey.

The drive to walnut creek was pretty long, but it was raining and we all went the speed limit. (Speed limit...what a concept.) She had a great nurse for the transit and we called him during the ride just to make sure she was ok.

Getting to Rossmoor was ok. Warning...there is no parking around there. I'll email out directions and parking instructions for the normal visitors.

We got there and they put her in her room. The hooked her up to the ventilator and we started stripping off stuff she doesn't need here. Off came the monitoring leads. Off came the blood pressure cuff. Off came the SCDs, but only because they need to order new ones for their equipment. (those are the air pressure leggings that keep down deep vein thrombosis in immobile patients.) Off came the IV fluid line, although the PICC catheter remains. She must have felt almost naked.

She blinked to get our attention. There were problems with the ventilator settings. She was saying she was getting too much pressure. So we talked to the RT who adjusted the vent. Sara seemed to be struggling and we tried suctioning, positioning, and she kept saying she was getting too much from the vent. She was not holding a good oxygen saturation, so they had to give her oxygen while we figured out what was going on. After a couple of hours of her struggling, and my struggling to understand this ventilator and its settings, and what to tell the RT about what the problem was, we all finally stumbled on the right words to communicate HER settings and what was needed. Basically, instead of giving Sara pressure support when she inhaled, just to overcome the resistance of the tubing, they had set her vent to give her constant pressure much higher than she needed. It wasn't a problem when she inhaled, but when she exhaled she was fighting the pressure of the ventilator. The poor kid was having to work to push out a breath and got all sweaty and tired and was very uncomfortable for a while.

There were a few other challenges getting her settled into the room and introduced to the new staff. I have to laugh now, but at the time I was pretty tense. The two women who came and gave her a quick bath after her road trip (and a huge bowel movement) really didn't speak english. They are speaking to each other in Tagalog, and I'm trying to talk to them in English. The put a sling under her to weigh her and then take her to the shower. When they hoisted her up she ended up all dangling like a fruit sack with arms and legs hanging out but with her head rolled up over her chest. It wasn't funny at the time, but to remember the look on her face...too funny. I think SNARF would be the word. Well, I had to tell them two or three times to put her down. Even the RT was wondering what they were doing... I'm going to have to figure out a different sling.

Well, after a few more hours of decorating her room, futzing with her ventilator alarms (to make sure they were all set and working), talking to staff, figuring out the routine, signing a mountain of paperwork, and turning down the suction pressure so it didn't hurt when they suctioned her traech...well, then we couldn't think of anything else we had to set up or check or communicate. And, frankly, I was exhausted by then. We checked in with Sara and she felt like everything would be OK tonight. I told her that she may cough and get in a funky position and end up staying there until someone noticed. She understood. But, we put up a rolled up blanket to the side she keeps moving to. I told her that she may poop and it wouldn't get noticed right away, and that she needed to let them know if they don't check. She understands. I told her that they don't know her very well and everyone may not realize she is aware (her roommate is not awake or aware at all) and not talk to her immediately. She understands.

So, I tore myself away. I have to trust that everything will be OK. But, being me I did get a phone number to call into at night to check on her. I've already called once and I've only been gone two hours. Although this is a good step, certainly in the right direction for her, it is still very scary for me, and I am sure her too. I told her that tonight was going to tell us a lot and that I would be there tomorrow morning and we'd see how the night went. We'll correct anything we need to. But, I think she may end up sleeping really well. Or, like her mother, not very much at all.

Ok. I'm rambling because I am nervous. It is too soon to call again and I certainly don't want to bug the staff too much. They have a lot more patients than just Sara. She is certainly the youngest, and that made me a little sad. But, at least her roommate is closer to her own age, although currently vegetative. I can't say enough good about the nursing staff she had at Kaiser... They got her when she was barely able to peek out of her eyes...and they encircled and supported her until she was ready to move on. She left there today able to smile, communicate freely with her eyes, cough strong, and show emotions. She left there loved and encouraged by people who have cared for and nurtured her back to health along side her family. What an awesome ICU staff. I said in my first couple of entries when she came to Kaiser that then whole environment FELT different...it felt more comfortable, more positive. UCDavis was very efficient, and detailed, and absolutely focused on only her (it was also one to one nursing). That approach saved her. The nursing she got from Kaiser healed her and has strengthened her as much as it could. For that we will be eternally grateful.

The rest is up to her, and time.