An uphill climb

Posted Jun 19, 2011 9:34am

After another 'good' night, Sarah's eyes were bright this morning. She slept for about 4.5 hours uninterrupted. That is the longest stretch of sleep she has had since she was admitted. I'm exhausted just thinking about that.

We have managed to get some of the worries off her mind, and perhaps sorted with the staff in the ICU. It is so difficult for her, after more than a decade of listening to her body and administering her own care in response at home, to let others be in charge of those actions. Hopefully, those watchful eyes can rest a bit easier.

We talked this morning for a while, and she told me how bone-tired she feels. I think this will be her greatest challenge, as she waits for the new lungs. Not knowing the hours or the days makes it hard to steel yourself for the journey. I think if we can find other benchmarks for her to work towards: a shower, a wheelchair ride, the beautiful view from the waiting room. Having some simple things that will take her mind off each breath for a while would be salve for a different ache.

She asked me to read the postings again last night, so keep them coming. They are a window to her life outside of tubes and traches, and help lift her spirits.

Upright Sarah Brigade

Posted Jun 18, 2011 6:53pm

The positives: Sarah was off the ventilator for a big chunk of time today. She sat upright in her chair for about an hour. They have taken her off the sedative/painkiller she had been on since intubation. They have taken out several of the extra IV lines so she is less tied down.

So those are all great accomplishments. However she exhausted herself and is sound asleep. She has been so hot for the last few days they have started keeping ice packs on her body. For all the times that she froze at home and at work this last winter, it seems an odd punishment for her to suddenly be so uncomfortably hot. She is back to being aware of every beep and action going on around her. She has spent her life managing every detail of her vest, nebs, and medicine that she is constantly tracking her nurses and caregivers. It's a good thing, but makes her anxious if they seem to do it differently or are at all unfamiliar with the procedures.

Let's hope for another good nights sleep.

Just like the old days

Sarah was awake for a while this evening. For about 90 minutes she asked me to just tell her about my day and wrote to ask about other news that came up. She was thrilled to be able to have ice chips and told me she was starving. We joked a bunch and caught up on things I knew she would want to know. She smiled many, many times because I tell stupid jokes- but it was almost like a normal visit with my sister (and tens of thousands of dollars of medical equipment.) She looked a bit tired so I helped her get comfortable and she went to sleep. It was fantastic to watch.

Sleepy, sore, but more comfortable

Posted Jun 17, 2011 8:58pm

Sarah is coming out of the anesthesia and seems to be much more comfortable with the tube out of her throat. She is still quite groggy and floats in and out. But when she is awake, she is quick with the pen to ask questions and tell us what she needs. Kai peeked in and blew a kiss from the hallway and Sarah blew one back. Her nieces and nephews are a big source of strength for her and her eyes had a sparkle when she saw him. The surgeon was positive about the surgery and there is talk of moving her to a different part of the ICU so they can focus on some physical therapy.

She was lucid enough that I read her most of the messages that have been posted so far, and they brought lots of smiles. Several made me tear up, but she is patient with me :)

We are on constant alert for the transplant call. As one doc put it to the other one, "keep the batphone handy!". So watch the sky for the bat sign. If you squint, it really does look a lot like a pair of lungs.

Tony

Recovery and a photo

Posted Jun 17, 2011 5:14pm

Sarah is back in her room from surgery. I am waiting at home with Kai to get the information from the docs about what the next steps are and what to expect, but I know they felt it went well. We'll see this evening how much activity they will allow her to do, but Dr. Wylem wanted her up and moving around as soon as possible. They don't want her to lose any muscle capacity while she waits for the transplant. I told her he wanted her to run a 5k and she smiled-- she knows how strongly he feels about keeping active. She takes the continued exercise pretty seriously and will even use her resistance bands while she lays there and can do nothing else. When I know more I will post it.

About the photo-- When Sarah arrived in the ICU she had Tricia take a picture of her attached to all the machines. She wanted it posted on her blog to help document her journey. She has used others' stories (blogs, videos, discussion boards) as a way to understand the challenges and set her expectations. Her blog is a way of paying that forward to those who will walk a similar path. She was adamant about showing the hard parts, as she knows showing and explaining them help reduce the fear and anxiety that other patients will have. Leave it to her, again, to be thinking of how she can help others while she is in desperate need herself.

More tonight when we hear from the docs.

Surgery Day

Just a quick post this morning, as it will likely be a long day for Sarah and will present many changes. She is to go in for the trach surgery around 10 am and it should take a little over 2 hours. She had a restless night again and only got sleep in smaller chunks. The tube in her throat is obviously bothering her, and they had to decrease her sedation to prepare for the operation. This caused her to feel the discomfort more often and wake up about every 45 mins. They would give her a burst of drugs that would knock her out, but she'd be up the next hour. She is ready for the surgery, and I don't think morning could come soon enough for her.

Mom, Dad, Chris, and Tricia are up there after relieving me early this morning. They will meet with the Docs on rounds and the ENT Doc doing the procedure, as well as an update from the Transplant Team. When I hear more, I will post the info.

Tony

Another Glimmer

Posted Jun 16, 2011 2:09pm

Another day, another plan. This morning we met with every different doctor to discuss the next few steps. Nutrition, ENT, Floor Docs, Transplant Docs-- you name it.

The current schedule has Sarah undergoing surgery for the trach tomorrow morning. Our experience so far tells us that the schedule might be more fluid than that. They will not be doing the stomach tube, nor the sinus surgery right now. They feel those operations are luxuries at this point and don't want to rock the boat. Additionally, they feel like the transplant is so imminent, they want to avoid any possible complications. One of her transplant Docs made the comment that it could be one to two weeks for lungs-- but of course no one knows. We are cautiously optimistic that things are stable and perhaps we have reached the nadir.

Sarah was awake a few times this morning and was able to write some small notes. She wanted to know what day it was and if her doctor had been in. When I told her about the surgery schedule, she asked if that would allow her to talk, as she is unable to do so with the tube down her throat. The nurse explained it might take some time, but I told her she wouldn't be sedated so she could write more easily. Her response was, "I paint." Even intubated and barely conscious she was still cracking jokes. That's a great sign.

Tony