A heart felt apology to everyone following this blog! We keep talking about updating the blog, but have all been so busy catching up on our own lives that we haven't sat down long enough to write something. The good news is that Chris' condition has been pretty stable these last few weeks and there hasn't been anything new to report. He has been fairly comfortable and sleeping a lot. Chris has made several trips out to the garage to check on his engine project, but hasn't had the energy to work on it. He also made a few calls to some friends over the last few weeks. We got into a routine with the home health nurse and physical therapist visiting weekly and the doctor has made two house visits since he has been home. Setting up his TPN everyday has become quite easy and we have all been trained on the process. Mary has been working remotely these last two weeks and was able to go in to work while Nic was here during her last visit and again on Thursday when Sean stayed with Chris. Nichoel comes back tonight for 4 days and she has scheduled her trips through the month of October. This is a big help to Mary as it provides extra support and allows her time to go in to work. Towards the end of this last week, Chris has been bothered with nausea that the medication hasn't been able to eliminate. These last two days his GTube has had less output which may have contributed to his nausea by allowing fluid to build up in his stomach. We tried flushing it yesterday to see if it was possibly clogged, but it hasn't seemed to help. If it doesn't get better, the doctors have suggested going to ER to have a scan to see if there if there is a blockage of some kind. Chris doesn't like that idea, so we are waiting another day or so to see what develops. We continue to take things a day at time and appreciate every day that we have. The continued support, prayers and loving thoughts from everyone had been felt and truly appreciated. Chris is very special and many of you have fond memories of times spent with him. Please continue to keep him in your prayers as he travels this journey.
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Just a quick photo update this morning for those of you eager to see Chris live and in color. He had a walk down the hall to check out the new washer and dryer and the new kitchen stove. There's nothing like a new appliance (toy) to get Chris out of bed!! Here he is after his walk, looking pretty chipper and ready for the day!
Nichoel went home to Oregon today, and will probably be back on Tuesday. She and Mary brought Chris home to the ranch on Monday afternoon, and persevered through a pretty difficult adjustment.
They are amazing caretakers, and Chris is so lucky to have such awesome people in his life! Chris is settling in at the ranch now, but it IS a lot of change for everyone to adjust to. So far, helping him shower yesterday was pretty tough on Nichoel and Mary (and Chris), and learning the system to replace his TPN (nutrition) bags every 24 hours was complicated, but they're learning how to manage that and the schedule of pain and anti-nausea meds. Dr. Su, Chris' palliative care doctor, visited today. Chris is still very hopeful that he can make a strong recovery and be walking about, working on engines and eating solid foods. The doctors are skeptical of his body's ability to regenerate to that degree, but as Chris says "You don't know my strength of will!" While we're all hopeful for a miraculous recovery, it is also important to recognize the seriousness of Chris' condition, and realize that his body and his meds are not able to fight off the spread of the cancer any more. We're hopeful that Chris will start to accept some alternative ideas that might make him more comfortable and help with nausea and pain management without horrible side effects. We're also hopeful that he can find a way to enjoy and cherish whatever time he has left, be that days, weeks, or months. Not having a firm timeline for what time is left is clearly difficult for Chris, and is also very challenging for Mary and other family members to plan around. Decisions are hard to make when it's unclear how long, and to what degree, Chris will need care. For those readers of this blog who are local, we'd like to invite you to join a meal train, providing prepared meals and groceries to Mary, Violet, and any other caretakers who are at the ranch on any given day. If you'd like to volunteer, please send an email to [email protected] and we'll add you to the Meal Train email invitation, where you'll be able to sign up for day(s) and meal or grocery delivery. Thank you for your ongoing support and well wishes! This transition to home health care is a difficult one, and Mary, Chris, Violet, and all the other family members helping care for Chris appreciate your support and encouragement. Chris went home today! It was a bumpy ambulance ride home, and he is now sleeping off the discomfort. Chris has the TPN nutrition bag via IV but all other meds are now in pill form. He had a fever earlier, but got it to come down.
We still need to get everything dialed in at home and establish a new routine, with nurses coming in once or twice a week (rather than once or twice an hour) to change dressings and help Chris bathe. Sean has some ideas to make the room more functional for Chris, so he can be as mobile as possible, since the TPN and pump didn't come with an IV stand. Yesterday Sean picked up a hospital table, and today he and Mary were at the ranch to accept delivery of a hospital bed and setup a tv and cable in the room that Chris will use.
Nichoel was with Chris today. She reports: He's had a peaceful day, lots of quiet and rest. He has gotten up a few times and used the toilet which I think is something new, at least new since last weekend. We haven't had many chats, just time being with one another. Sounds like your mom and Sean made great progress at the ranch, his new room is coming together nicely. Chris is on oral Ativan now, and is off the PCA on-demand pain meds pump. He's working on keeping liquids down, but is glad of the nutrition bag and preparing to come home soon. Thank you all for your prayers and support! Brenda here: I got to spend most of the afternoon into evening with Chris yesterday, and a few hours in the afternoon today as well, and he was very awake and 'with it' between naps.. The doctors are trying to wean Chris off all IV meds onto a pain patch and oral pain meds to make it an easier transition to home. His nurses and doctors are all very excited about the walk he took yesterday morning. Mark (palliative care doctor) and Nori (hospice intake) met with Chris, Mary and I yesterday afternoon. Mark told Chris how impressed he is with how well Chris is doing right now, and strongly urged Chris to head home and take advantage of this opportunity to spend some time at home, in comfort with family. He was direct and told Chris that the cancer is not going to get better, but worse, and that the pain is not going to get better, but worse. It was hard for Chris to hear and even harder to process the reality of what that means, but Mark kept reiterating that he is doing better than any of the doctors expected to see, and this is a great opportunity to have some quality time at home, with no guarantees (good or bad) of the timeline or next steps. It is sounding like we're working towards a transition home on Monday through Home Health. They'll be able to support Chris' use of the TPN nutrition bag and includes a doctor who makes house calls. If/when the pain or need for support becomes more than what is available in Home Health, they can transition seamlessly to Hospice Care (and back again, if appropriate). It is awesome to see Chris feeling a bit better and starting to find a new normal and balance with his pain meds. They have a few days to really dial in the right recipe to keep him comfortable without totally knocking him out before planning to head home. Chris had a good and active morning, with his NG tube out, and his GTube clamped to see if he can digest liquid food (he's been cleared for a full liquid diet). He had a bit of a walk after breakfast and is now sleeping peacefully.
Chris is off Tylenol (unless his fever crops up again) and his PCA pump is only on demand- there is no steady dose anymore. He has a Fentanyl patch on for pain management. He is still on Ativan and Roxanol. Mary is headed home for some much-needed rest and a shower, and chores that need doing. Chris' uncles Bob and John visited with him yesterday, as did Sarah and Sidney. Brenda is with Chris now, enjoying some HGTV veg-out time while working on her laptop. Nori (the Hospice nurse) is planning to come by this afternoon to chat with Chris and answer any questions he has, and his palliative care doctor Mark is going to stop by to check on his pain levels at some point. On KQED radio today at 10 am was a program about living with a chronic illness. It's on our list to listen to in the next few days to help us (and to help Chris) prepare for and appreciate the next steps of his journey. Take a listen: http://ww2.kqed.org/forum/ (KQED Forum 10 am 8/2/17 "Living Well with Chronic Illness"). |
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October 2017
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