Uppity Duppity Little Chicken

That's what Mom always said to Geoff and me upon waking in the mornings. Today, Mom seems to be waking. Her doctor has decreased her anti-anxiety medication and her pain meds, so that she can wake up and ace her breathing tests. Apparently, when you're under a blanket of narcotics, it's hard to follow commands. Go figure. Anyway, today she seems much more alert. Ironically, she seems to be much more calm, also. I think she's waking up enough where she can better handle what's going on, and she is much receptive to calming words. This morning, when Geoff and I went to see her, her eyes were clear and I saw HER. I asked her if she wanted to watch TV, and she nodded her head. When I told her I was holding her hand, she squeezed. She's still a little "in and out" of the fog, but she is becoming more alert.

The put her in the gurney chair again today. (Yesterday, she stayed in it for more than an hour.) Heather and I are heading back to the hospital soon. Geoff headed into SF for the day to get some work done and I am heading back to Indy this afternoon for the weekend. I very much need my home, my husband, my cat for a little "mental health" break. And, at the same time, I don't like leaving mom. All the nurses tell us to take care of ourselves... that the hard part is still to come, so I'll go home, make sure the house is still standing (I haven't been home in over a month now) and recharge my batteries.

love,
jennifer

Where to send cards to Mom?

I've had a lot of e-mails from friends and family wanting to send cards to Mom. I've included the address below. Since she is still in ICU, we'll all have to hold off on flowers for now, but we'll let you know when she's on a regular floor and can receive more than cards.

Thank you!

John Muir Medical Center
1601 Ygnacio Valley Rd.
Walnut Creek, CA 94598
ATTN: NSICU, Sheryl Barrett

A More Restful Wednesday

Hi All. Geoff and I spent a couple of hours in mom's room this morning. We decided to camp out there, so that we could calm her if she became agitated. We had only a couple of opportunities to do that, as she seemed much more relaxed today. Geoff, Heather and I made a playlist with some of mom's favorite more mellow music, so there is now music in her room. I did a little research, and music has been very effective in helping patients, who are intubated, to heal more quickly. It has also been shown to reduce anxiety in patients. It's anyone's guess if it's the music, the anti-anxiety medication, the sedation wearing off more and more each day or having her kids in the room that's relaxing her. What's important, is that she is more calm - her breathing is slower and she's only on the vent at a very low level, just to back her up if she needs it.

This afternoon, they will put her up in a gurney chair. Her doctor wants her to be sitting up ASAP, since she's been laying down for 2 1/2 weeks now. This not only helps her muscles and skin, but allows her lungs to function more properly and provides variety for mom. They did this yesterday, thinking she might only tolerate it for a few minutes, but she sat there for 45 minutes. After that, she was tired and rested well for the rest of the afternoon. Today, they will sit her up again. They'll also take the ventilator tube off of her trach entryway, in order to see how she's breathing completely on her own (no ventilator for back up). Now that she has the trach, they can try things like this, since they can pop the tube off and onto the trach easily. It's much more easy to regulate the vent on the trach than it was when she had the breathing tube down her throat.

We'll be heading back to the hospital to be with her while she's in the gurney chair, so we'll post again later today.

love,
jennifer

Kicking and squirming....

Hello All,

Oh, for better days...

Mom is having a tough time. She is extremely anxious and restless, but without the facilities to express herself. She almost knocked the passive motion machine off the bed by squirming, and her nurse said that she has an incredibly high tolerance for the anti-anxiety medicine, so that doesn't help anything. I spent time tonight by her bed, assuring her that she was OK when she would wake, and being quiet when she was asleep. She would be calm for about two minutes, and then she would wake and start arching her back and moving around, which causes her heartrate to elevate and her breathing rate to increase. I think it is important for her to have reassurance that she will be OK, so I will not be going to the shop tomorrow. She seems to be at a critical point, coming off the sedation, but not coherent. The goal is to get her off sedation, off the vent and off the ICU. It looks like things will get worse before they get better.

Love,

Geoff

Quick update for now...

Hi Everyone. Mom had a tracheotomy today, which went well and without complication. She is now completely off the sedation. Geoff, Heather and I went in to see her shortly after the procedure and she was asleep. Although we were hoping she could come completely off the vent all at once, it sure is nice to see her restful and comfortable and to see her face without all the tubes down her throat - the white tape holding them in place across her face. There are no visiting hours from 3 - 4, so we took a break from the hospital but will head back there in the next few minutes. We'll post a more thorough update this evening.

Thanks, again and again, for your support.

love,
jennifer

Sunday Update

It's a lot like the movie Groundhog Day around here. Mom is still too anxious to do well on the breathing tests. However, she is breathing on her own and doing well at that... they just have to make sure she can sustain it before removing the tube. Today, it seems like the weekend pulmonologist, in tandem with Mom's day nurse, RJ, made some good decisions. They will put her on a low dose of anti-anxiety medication 24 hours/day, so that she is more regulated. As it's been, they give her the anti-anxiety when she needs it, then it knocks her out, which works against her for the breathing tests. So, they're working hard to get her anxiety under control, since that seems to be the major obstacle for her at this point.

It was an especially heavy day in Neuro ICU today. (She's in Neuro ICU, just b/c they had a nicer room available there.) A 29 year-old local police officer was in an auto accident yesterday and has been declared brain-dead. They're keeping him on life-support to see if organ donation is an option. Other stories of tragedy unfold daily. Neuro ICU is just a heavy place to hang out... no one in there is necessarily doing well, and guests often pass by completely in tears. I'll be so glad for Mom to get out of there. It really feels like she's in the wrong place.

We'll know more about what's next tomorrow, since Mom's doctors will all be back after the weekend.

love,
jennifer

Saturday Again

Well, Mom is still on the vent. They took her off sedation this morning, and, again, she got anxious and her breathing was too rapid to "pass the test." Geoff and I were both extremely disheartened to get to the hospital this morning to find her sedated again, when we had been expecting extubation. They'll try again tomorrow morning, and Geoff and I have requested that they do not take her off sedation until visiting hours, so that we can be there when she wakes up. We hope that it will relax her a bit to see familiar faces when she wakes up, and, that with our help and reassurance, she will remain calm for enough time to satisfy the doctors, so they can proceed with extubation. If our Jedi mind trick doesn't work, they will most like do a tracheotomy tomorrow, which will keep her on the vent, but allow them to decrease the sedation (since she won't have a tube down her throat) and get her moving more, which will be good for her lungs and muscles. Also, with the trach, it is easier to regulate the frequency of breaths given to her by the ventilator. They can take the trach out as soon as she is doing well breathing on her own, which could be a short amount of time, given that mom's lungs are in pretty good shape. After seeing her sedated again today, I just want her to be comfortable - to have the tube out of her mouth however she can. She's far too anxious when she isn't sedated, since, as I've been told, breathing through a ventilator is like breathing through a straw. Not fun for anyone.

Today was not an easy day. Geoff and I try to be 50% advocate/50% asshole when dealing with the nurses and doctors, and today we were certainly the latter. When we walked in and saw her sedated again, we lost it. It made no sense, since we had been told yesterday that she had done well on her breathing tests. And, we found out that when they took her off sedation this morning, they did not give her anti-anxiety medication, which we have told every one of her nurses is very important for her. That was just the start of the day.

Please send lots of positive energy, prayers and love to mom tomorrow morning. Around 9Am PST, we'll be working with her to relax, so they can take that damn tube out once and for all. Please try to take a moment and envision her relaxed and calm, so we can all contribute to the next step in her recovery. (If you're not into all this woo woo stuff, just do whatever works for you!)

Thanks to all for your support. Fingers crossed for tomorrow.

love,
jennifer