tough day all around...

Sara got to start off the day being more poked and prodded than usual these days. Her PICC line had sprung a leak and needed to be replaced. The PICC line is an IV that snakes through the veins to above the heart in the superior venacava. It is a more long-term IV.

Well, hers split on one side, so it needed to be removed, and another one put in. I spoke to the PICC nurse and consented to the procedure. So that is how she got to get her day underway.

They didn't move her into a cardiac chair today. Some person called the hospital and complained that the lift team was slow in responding to patient moves. Well, that person was me. Yesterday the lift team did not respond to their pages to move Sara back to bed. She was made to sit in dirtied linens for an hour and a half, before her nurse was so fed up waiting that she asked other nurses going off shift to help her move Sara back to bed. I had lost my patience 45 minutes before, and cleaned her as best I could and somehow managed to get a towel under her myself. So, today I called and raised holy hell with the hospital.... I guess that kind of backfired. Wanted them to have a second lift team, dedicated to the critical care floor - not decide to keep her in the bed only today...hmmm...

So, I had pulled myself out of bed midday, only because my phone was blowing up repeatedly and went in to do some work. My mind, and heart, just weren't in it. Its not good for a person to be this sad...

I called late this afternoon to check on my girl, only to find out that she was in respiratory distress. Her tidal volumes (how much she inhales) had dropped from the mid 500s to 200 and below, and she was laboring. I threw my laptop in the bag and ran out of the door to Sacto.

Rush hour. Great. And goody two shoes me not willing to weave like a maniac just to get through. I called the hospital on my way...her nurse couldn't talk to me (said another nurse) - call back in 30 minutes. I'm sorry, but 30 minutes is an absolute eternity when you know your child is having trouble breathing and 4 minutes is the maximum you can't do that without damage... So I called back in what seemed like 10, but was probably 2 minutes. I asked the person who answered if Nurse-Cindy was done with the procedure in Room 3025. (ok...so I was fishing to see what was going on...its my kid). Nurse said "no" and that Dr. Pulmonology was in there. Ok, I thought to myself, at least the pulmonologist was there, and he will be on top of this. I heard her ventilator alarming in the background, but not the real bad alarm that says she wasn't breathing at all. So, I put my foot down and made my way to the hospital.

Daniel called me a few minutes later. He told me that staff had kicked him and her friends out. They said she was decompensating and needed to help her. I told him that was bad - that is approaching respiratory arrest. I told him to send the friends home. They didn't need to be there, but he could stay and I would bring him back. I called back a few minutes later, figuring it was better to allow him some support while it was scary. Having been in that situation countless times in the last 6 weeks, the only thing that kept me from flying off the face of the earth was talking to Don or sending him a text message if I couldn't talk. I knew if he knew I was scared he'd send me his strength and love, like he would give me if he were there.

I got a phone call about 15 minutes from Nurse-Cindy. She opened with "she's ok. everything is fine now." An opening I actually appreciated. She explained that Sara's volumes had gone down more and then her oxygen saturations had dropped as well. They had to move fast and Dr. Pulmonology had taken a bronchoscope in with him in case he needed it (to go into her lungs and see what the heck was going on.) He ended up not needing it, as he quickly determined that she had a blockage. They tried suctioning it out, but the nurses couldn't. He got in there and was able to pull a big "plug" out of the end of her breathing tube..just beyond the reach of the regular suction catheter. Well, he got it and just in time. According to her, he was about to have to pull the current traechestomy completely out and put an emergency tube in. I am sure Sara was scared out of her whits...

I finally made it to the hospital and into the room. I'm checking vent settings, monitors, her color, taking inventory, looking in her face, assessing everything. Then I stood next to the bed, took her hand, and took a deep breath and let it out. ...she's ok...she's still here...she's ok...

I started talking to her.
Mom: you gave us quite a scare. were you scared?
Sara: yes
Mom: are you ok now? feel like you can breath ok?
Sara: yes
Mom: are you tired after all of that?
Sara: no
Mom: wow. that's good. you're getting stronger.
Sara: yes
I take another long slow breath and let it out...almost like a sigh of relief. ...she's ok...she says so...

Sara is searching my face. I'm at a blank of what to say or do now. I'm just standing there, looking back at her while I stroke her soft arm with one hand and hold her hand with the other.

Mom: you're looking at me...
Sara: yes
Mom: is everything ok?
Sara: no
and then I know. She can see the sadness in my face.
Mom: you can see it in my face?
Sara: yes
Mom: you're ok Sara, you really are. the sadness is something else
Sara: looks at me, waiting for me to explain...
Mom: Don broke up with me. that's what it is...
Sara: her eyes get wide, then "no"
Mom: yes

I concentrate on that arm and hand, rubbing gently, not wanting to keep talking about it. I look up and Sara has started to cry. She knows how much he means to me.

Mom: you're crying. are you in pain?
Sara: no
Mom: are you crying for me?
Sara: yes
Mom: oh, baby girl...you shouldn't cry...not for me...i'm the mom. I just wanted you to know why I was sad, so you didn't think it was something wrong with you. ok?
Sara: yes

I just looked into her face, seeing her love for me and looking back with my love for her. We end up staring into each others eyes a lot. We know each other. Beyond being my daughter, she is also a woman I really like. She and I will spend hours on my bed, talking about this and that, her boyfriend, my boyfriend, this work thing, that road trip...stuff. I miss that.

Daniel and I stayed for a few more hours. I stepped back and let him be with her. They are so cute together, and a great source of comfort to each other. He's perfectly happy to drape her hand over his head just to feel the warmth.

On the long drive home I was rolling around the thoughts in my head. My baby girl cried for me... In the midst of being in the hospital for the last 6 weeks, quadraplegic, on a ventilator, and just having had respiratory distress, she cried for me... that messed me up... its messing me up now just thinking about it. she knows how sad I am. I couldnt' hide it from her. I haven't shed tears in weeks - feeling almost all cried out from this unbelievable string of events. But, on that long drive home, rolling around in my thoughts, they started... little rivulets rolling down cheeks flushed from fighting it... vision blurred in waves as they well and spill... a person shouldn't be this sad...