Musical Beds

Greetings,

Monday afternoon, Risk was transferred into ICU. THIS IS ONLY A PRECUATION! PLEASE DON’T PANIC! His oxygen levels were below normal and unsteady, and the doctors felt that this was the best place as the ICU has higher O2 capabilities than 11 Long, and so that he could be monitored more closely. The Hospitalist on 11 Long stated “that we are generally more aggressive with our approach up here, I think that the ICU is where he needs to be right now”. They continue to monitor his lungs for signs of fluid and/or pneumonia, he has been retaining fluids, for which he is receiving medication. As of yesterday (Tues.) he is off one pain medication, but remains on 2 other heavy pain meds to help control and fight the bladder issues. He has been more lucid and was able to watch the inauguration. Beck asked for Champagne with lunch on Tuesday to celebrate the swearing in of the new President, sadly none arrived. Occupational and Physical therapy are attempting to work with him. We expect that he will remain in ICU for awhile longer, we are not sure how long. Beck’s assessment from her visit the other day, is that he is a ‘low-level’ ICU patient compared to others in the unit. What we learn, and re-learn, is that things with Rick can change, be it good or bad, on a dime and with no warning.

As always, the hospital messages are a bright spot in the day. He loves hearing from you (he is now on the 13th floor ICU). Thank you for your continued love and support. We will keep you updated as we have more information.


Love,
Rick, Beck, Emily, Tori & Sean

P.S. A random picture for your to Enjoy. It's Kennedy Medows in Northern California May 2008. Enjoy!

Slow Movin

Greetings,

Today is day 6 of the hospital stay...nothing seems to be short and sweet. Test results came back this morning showing the viral form of the Cyto Meglo Virus (it comes in Bacterial, Fungal, and Viral), which is being treated by a VERY HEAVY antibiotic that is considered a low-dose chemo. He continues to battle with the bladder issues, for which he is receiving an opium based based drug for pain that they hope will alleviate some of the issues. Additionally they are flushing his system with IV saline. At this point, there is no marked improvement in his overall state. He has in the last 2 days, with Mom at his side, taken a brief walk around the floor, but that is very labor intensive and knocks him out. And he continues to have little appetite. Also this weekend, he was moved to a private room (he had been sharing one) due to his compromised immune system.

The weather has been lovely in The City for the last week of so. Michael and I were able to take a nice walk this week while Dad was having his Broncoscopy, and Mom hopes to get over to Golden Gate Park for a little mental uplift for her on one of her next visits. And the continues sunshine provides some pretty amazing views from the solarium. So there is a little bit of joy amidst all the confusion and frustration.

He has been receiving the hospital link messages, and bring a smile to all of our faces. Again more joy and sunshine amidst everything. So keep 'em comin! The link is below in case you haven't saved it to your favorites :o) We would request that you refrain from contacting him even on his cell phone at this time. He continues to be in a great deal of pain. As always we are so thankful and blessed for your continued love, friendship, and well wishes.

Much Love,
Beck, Rick, Emily, Tori & Sean

https://www.ucsfhealth.org/adult/contact/patient.html (11 Long is the room/floor#)

P.S. Also, we are so sorry not to have any pictures to add, this is of great concern for Mom who wants to make sure everything looks nice! We have some pictures, but they aren't related to anything having to do with anything, so we opted not to insert random pictures, we hope that's OK.

Survey Says...

Greetings from 11 Long...

Today is day 3 of Dad’s most recent stint. So far, to be totally honest, no one seems to know what’s going on. Yesterday (Wed) was not a good day by all accounts. The best overall description that I can give is that he just wasn’t (and isn’t) feeling well. He is in pain all over, the mouth sores are still present, there are some bladder issues that are inconvenient at best and I don’t think that it’s been ‘at best’ recently. Mom was in yesterday and said that there was a whole lot going on, and then a whole lot of nothing.

The heads of departments for Pulmonary, Urology, and Infectious Diseases have were all in to see him. The consensus at this time, is to treat the symptoms. Not necessarily the normal course of action, but at this stage there seems to be so many different things going on it’s difficult to find the source of the problem. And in most things with transplant patients, they are intricately connected and are often precarious.

With that said, his lung scan showed some ‘sketchiness’ that they believe to be pneumonia, but NOT related to GVHD. His kidney numbers continue to be good, and his liver numbers are ‘ok’. At this point it is being monitored, but they are not cause for concern. He has tested positive for Cyto Meglo Virsu (CMV), which is common in transplant patients, and can explain many of the symptoms that have recently presented.

Today, he had a bronchoscopy to have a look at the ‘sketchiness’ in the lungs. They expect to have some results back later tonight or in the morning, but will also be sending it out for more detailed tests. Again, they do NOT think it is GVH in the lungs, but rather a virus due to the CMV. We are all thankful that they caught the it early before it had the chance to become an issue.

Some GOOD news, is that after consulting with the clinic, they have decided the increased level of prednisone have not had marked decreases in the overall appearance of the rash (which IS GVH), so they have decreased the prednisone from 100mg to 60mg.

So that is the news, as it were, from the hospital. He seems to be feeling a little bit better, and more coherent now from when we arrived at lunch time today. We will keep you updated as information surfaces. As always, thank you for your love, support, and hospital link messages!

Much Love,
Emily (With Mom, Dad, Tori & Sean)

P.S. There is also a blog post that Dad wrote around the Holidays that, for some reason, was never posted. I have posted it now, and you shoudl find it below this one. Thanks :o)