Just wanted to send out a update on Jay.
Just wanted to send out a update on Jay.
Jay’s stay in the family lodge last night went well, and he was discharged from NIH this morning. He now has 2 new medic-alert bracelets to add to his set: one warning against steroid use and the other requires all blood products to be irradiated.
It’s been a big day here at NIH. I don’t know all the details that led up to it all, but Joe took Jay off-campus for what Jay called a qualified success of a lunch date.
Jay’s now exhausted from being out and about, but the meal was successful.
His blood counts are good enough that the doctors want to discharge him tomorrow. He & I are going to spend the night at the family lodge, and if that goes well, then discharge is likely.
We still need to ask the doctors about his discharge meds and what his discharge care will be like, so more on that as we know it.
Through Michael’s (Jay’s brother) connections and Joe’s efforts to contact the landlady, Jay & I have found a room to rent in a house not too far off-campus for the time between his discharge and his first follow-up, which will be 4/14-4/15. It will be nice to be out of institutional living for both of us. We should move into that room on Friday.
As I type, Jay’s undergoing acupuncture to try and treat the food issue, which already seems to be on its way out. But we figured it wouldn’t hurt for him to give it a try anyway. Now the acupuncturist is trying to treat Jay’s cough – fingers crossed. Joe and the acupuncturist are having a lovely conversation in her native language.
Jay is much more alert today, and will likely soon be out of email and social media jail. We put him there to keep him from “drunk” blogging/emailing/tweeting/
His blood numbers are starting to come up, and the doctors are pleased. He had a blood transfusion earlier in the week and platelets a couple of times. We still haven’t seen neutrophil numbers, but his white cell count and his platelets are improving.
Jay continues to have issues with the cough and with eating, although both things are improving. Today he’s actually eaten two things and kept them both down with no problems. His lower GI is waking up, too, which is a very good sign. But his upper GI is still very suggestible, and the mere mention or thought of food or the presence of food can still give him coughing or retching fits.
It’s unlikely that he would be eligible for release before 3/31. One of the things that has come up is that his first follow-up appointment is for early- to mid-April. Given the rate of Jay’s recovery and his ongoing issues with eating, we might end up staying through until the follow-up, rather than going home and coming back.
Jay’s doing better today, making slow progress toward recovery from all that this protocol has put his body through.
His cough is much improved, especially after one of the nurses figured out that he could take a cough syrup without codeine. That made a huge difference.
He’s been taking ativan for nausea during the day, which drug has been knocking him out, but this morning he decided to skip that, so he’s been more focused and present and funny-snarky as a result. He still falls asleep at the drop of a hat, but is more here when he’s awake than he’s been in days.
This improvement can be best seen in his foray up to the NIH patient library, where he donated some of his works.
On the down side, his hair is finally starting to fall out, leaving his pillow looking like a large, dark cat slept on it. I held out a handful of hair to him at one point this morning and asked if we could make a new Jay if we gathered enough hair. Himself was not amused, but I was.
Just wanted to post a quick update on Jay. He had a low-grade fever overnight, which of course had the doctors concerned, but it broke in the wee hours. They’re still keeping a close eye on him, and he’s mostly sleeping, which is why he hasn’t blogged today.
At one point this morning he promised not to multi-task. I laughed and said he shouldn’t even be trying to task. Hence this post from me.
Sleepy Jay says “Hello, world”. He must be dreaming of programming.
He’s been sleeping soundly, and is awake at the moment getting vitals done. He’s survived
5 3 doses of IL-2. Awaiting news from the doctors about continuing the dosing.
Edited later to fix my misunderstanding of the number of doses.
I frankly wore myself out with just a couple of hours of driving around. But it was important to her. And we had fun, not to mention got in a few good conversations, including at least one parent-child classic for the hormonally charged teen. All good, and she can be wonderful.
Photos © 2014, B. Lake
This work by B. Lake is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Blessed are they which are persecuted for righteousness’ sake: for theirs is the kingdom of heaven.
— Matthew 5:10
Yeah, that must be it.
Jay’s been more alert when he’s been awake in the last hour or two, so that’s good progress. He’s had some broth and jello (the latter being one of his least favorite foods), so that’s even better progress. He says his pain level is coming down, so even better still.
I’ll be spending the night with him tonight, unless they toss me out. With any luck, he’ll be back online tomorrow with his own account of things, to the extent he remembers it at all.
The post title says it all. Jay is out of surgery and is now in the ICU. He’s still very groggy, but seems lucid in his momentary waking periods. His smartass sense of humor is intact, although somewhat more obscure than usual.
We still haven’t talked to the surgeons, but that will come soon.
For the moment, all is well, if you discount post-operative pain and recovery and all that.
Hey gang, this is Lisa with the keys to the blog.
Just said good luck to Jay as they got him ready to be wheeled into the OR. I thanked all the doctors and nurses, who said they would take good care of him.
There’s still prep to do, but once the surgery starts, they expect it take about an hour, give or take. I’ll have more news as soon as they update me.
Think good thoughts …