Friday, June 4: Update 3

I’m writing this entry from Claire’s bedside as I watch her sleep. Nothing new has happened since the last update. I did, however, omit some minor information from my last post.

One of our excellent day nurses, Kara, said she knew she was a real nurse when she started gettig so excited about pee. Crude yes, but touching when you understand that base functions like this indicate certain levels of neurological function. We had similar hopes today when Kara reported that it seems Claire is passing gas. It’s indicative that her digestive system is starting to function and we’ll be watching to see if she can take this first step to the next level. Here’s hoping we will soon be more excited about certain functions than we’ve ever been.

I’d mentioned that Claire’s ventilator settings needed to all be at a certain range before they’d remove the tube. We’re almost there. My unqualified forecast is that we’ll be there by the end of tomorrow.

I wish I could give bigger and more progressive news. I hope all of you that were waiting for an update can sleep soundly tonight. Thank you for your prayers, hopes and support.

Friday, June 4: Update 2

While this is titled an ‘update’, there isn’t much new information to share. We met with the doctor this morning, one of the six we haven’t met before. Rather than discuss new information we focused on agenda setting for the next few days. Claire has had a challenging two days between medication changes, the MRI and intubation discomfort: the doctors want to slow things down so it’s not so hectic. So we are. The doctors re-upped her sedative slightly and are slowly dialing back on the ventilator. She’s at 14 assisted breaths per minute right now and 40% oxygen. Once Claire is around five assisted breaths per minutes, we’ll begin making plans to remove the tube and get off the ventilator. That will give us the opportunity to start weaning the meds without the intubation (against which Claire has an apparent vendetta).

The only big news that took place involves Tiffany and me. We were encouraged to get out of the hospital for the first time since Sunday. It took some cajoling and bargaining, but we ended up leaving for a while. Both Tiffany and I have been feeling bereft of emotion of late, our bodies, minds and eyes wracked by the events and accompanying tears. It was nice to zone out for a while and we’re finding that while we’re away from Claire, we prefer to let our minds go blank. There are just too many rabbit holes we prefer not to jump down right now.

We went to a store to get some socks for Autumn and I mentioned that I had a weird feeling with all these people around that are oblivious to what is going on. Tiffany felt the same way.

Our final stop was at Freebird’s World Burrito in Addison. We had no plans to weep in the middle of Freebird’s. But we did. And it’s all because of the kindness of strangers who had no idea about the last week. I’ve mentioned that we feel bereft of emotion about what has happened. Instead we’re finding ourselves emotionally volatile about the strangest things. Steve took our order at Freebird’s and the care, attention and kindness he showed us made us cry. It was simple things like handing us two glasses after we’d ordered to get something to drink and it was “on him.” I spoke with the manager, Brian, and told him that Steve doesn’t know what we are going through and his kindness meant a lot. While we waited for our order, Brian walked over and laid a handful of gift certificates on the table. He told us it wasn’t much and he hoped things would start getting better. I don’t like to make people uncomfortable and I’m sure we did as both Tiffany and I thanked him through tears.

We share this because the comments on these posts are from strangers, friends and family alike make us feel the same way. We’ve are reduced to tears each time we read the comments and its your kindness that overwhelms us. We can’t thank each of you by name right now, and please know that we are indebted to you for your largess.

We hope to have positive news to share soon. Our hopes are growing and we are drawing strength from those around us. Thank you for your continued prayer, thoughts and support.

Friday, June 4: Update 1

Last night Tiffany and I sat together and read the comments to the last update. The stories and encouragement helped us at the end of a very hard day.

I haven’t had a chance to meet with the doctor yet this morning. Last night was uneventful. Claire was tired from the days events and slept accordingly. Her drug intake is lower, however, it is an ever changing cocktail of medicine as doctors seek to balance keeping her as comfortable as possible and making her discomforted enough to wake up. There’s no formula for her body, so doctors are frequently changing her dosages and adding or subtracting meds.

Tiffany felt encouraged this morning after her time with Claire. The night time nurse and Tiffany both see signs that Claire may be responding to Tiffany’s voice. Claire’s agitation is apparent and frequent now as she tries to wake herself up. While it’s hard to watch, Tiffany said that when she talks Claire’s vitals seem to moderate and her eyes seem to attempt focus on Tiffany’s face. It’s not conclusive, but it is enough to bolster our spirits this morning.

Claire is still on the ventilator.  We don’t have a time line for getting her off the ventilator. It has to be operating at some key support levels before the doctors will discontinue use. We decreased support a little last night and will continue to decrease support throughout the day. It will be nice to get the tube out of her throat because it seems to be a major source of her discomfort.

So the waiting continues. This has been the longest break between updates and for those of you who are visiting the site often, I apologize for the delay. Thank you for continuing your prayers. I will post again after I meet with the doctor this morning.