4.26.2006

Wednesday, April 26, 2006 - evening

[Photo: Dr. Andrews. Read more by clicking on his name down below. It brings you to his impressive CV]

Reminder: online visiting schedule available:
Go to: www.google.com/calendar
Follow instructions posted under Tues 4/25 post: "Online Schedule for Mike Visits."
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Ok, so today sucked. Got to his old room (in the Gibbon building) at about 11 am. He was sleepy as hell. Short term memory so poor that he had trouble conversing. Within a half-hour they came to take him over to JHN for radiation.

In the afternoon, they transfered Mike to the Neuro Intensive Care Step-down unit at Jefferson Hospital for Neuroscience - JHN (entrance on 9th street between Walnut and Locust). He's in room 6613, a single room monitored by cameras 24/7.

While it's logical to have Mike in the same building as radiotherapy, I failed to realize how anxiety inducing this move would prove to be. Not for Mike, but for me. Mike has been at the other hospital for about 5 weeks straight (minus a 3 day weekend home 3 weeks ago). I have found some kind of normalcy there inside a situation that it utterly abnormal and unpredictable. At the Gibbon building, I know all the nurses. They know Mike. I know all the residents. They know Mike. They know he is unable to speak for his own condition or report on his own situation in any way. I have created a really good relationship with them. They respect me and I them. Moving to a new NICU meant making new connections with new nurses, nurse pracitioners and residents. It meant rehashing over and over again with nurses, nurse practitioners etc. all of Mike's information. Yes they have his chart, but there's no sign on the front, no Cliff Notes that say, "Nothing this patient says can be taken at face value ... even if he speaks as though he knows what he's talking about."

Nurse: "Any headaches?"
Mike: "Yes. Bad ones."
Nurse: "Any fevers?"
Mike: "No."

Danna: "Actually, both of those responses are false. He's been having high fevers (103-104) up until couple of days ago, and has not had headaches to speak of."

She then asked me if she were to place a pencil in Mike's hand, would he know what it was? I shook my head no (Mike's eyes were closed). Mike said audibly, "Yes." So, the nurse put a cell phone in his hand. Mike, what is this? pause....pause....

"A bottle."

It didn't take forever to get the Neurosurgery nurse practitioner and Mike's nurse on the right page as to his significant deficits, it just required that I fight for the true situation to be known - once again. I posted a sign over his bed to indicate that he has a short-term memory deficit, and Mike's nurse said that she would inform the next nurse about the entire picture that I provided her about Mike's condition. They deal with these issues often over there, so I trust that Mike's deficits are not new to them.

So, why a sucky day? Mike's totally sleepy. No appetite. Barely ate a thing. And in a very disturbing change in his condition, some of his more primitive bodily functions are no longer in his control. I will leave it at that.

Frankly, I find these changes devastating.

Fortunately, I ran into Dr. Andrews at Mike's new abode. JHN is where Andrews works most of the time, so Mike will probably be seeing him more than Evans through the radiotherapy sessions. Andrews is also the person who oversees radiotherapy at Jefferson Hospital of Neuroscience. I told Andrews about Mike's decline over the past 2 days and how it concerned me. Extreme somnolence (fancy word for sleepiness), not eating, not drinking, losing control of certain lower level body functions. Andrews heard my concern and said he's ordering a scan to be done tonight to verify that these changes are not due to some sudden change stemming from hydrocephalus or some other acute reversible change.

Meanwhile, it is clear that Mike is far from being ready for a brain injury rehabilitation progam. His condition is still in flux. I told Andrews that I didn't feel that transporting Mike to and from Magee for radiotherapy at Jefferson would make best use of his time in Magee's intensive rehab program, especially given the fatigue that Mike might experience from radiation. Andrews told me that Mike's not going anywhere for now. In fact, Mike might be camped out there at JHN throughout radiation (6 weeks? yikes).

I did my best to make Mike's new room comfortable - put up pictures he can't see and signs that he can't read. Put a huge photo of Baxter next to his bed. "Who's this?" I asked, pointing at the photo of Bax.

"Brett?"

"Brett Sirota?' I asked him.

"Yeah."

Before I left the room, I turned on the TV for him to have something in the background. On my way out the door I watched as he turned the TV on and off and on and off again. I put down all my bags, went over to help him and redirected his thumb on the remote control to the channel button. I put my backpack on, kissed Mike and headed out the door. Behind me, Mike sat content, turning the television on and off over and over again.

9 comments:

Anonymous said...

just want you to know I follow the blog every day and send our love and prayers. I think you are right about the feelings--I know he is feeling the love from you and these incredible friends on this blog that are there for both of you. That is more important than answering the questions that are asked of him correctly. A big hug to you, Mike and Baxter and Jae- Love, Aunt Mary Regina

Georgia said...

Dear Danna,
It's Dr. Georgia, here. Since Mike's move to Jefferson Hospital for Neurosciences, I am no longer one of his consultants, so, at this point...I am now a friend who's a doctor, rather than a doctor who's a friend.

I'm on call tonight, pretty close to Mike's old room in the main hospital.

I am not surprised the move to JHN today was extremely challenging.

You are such an incredible person, please add me to your list of friends who truly admire you. You have excellent instincts, please trust them, and the ability to very accurately describe what you see and feel. You have been in the unknown for quite some time, and it looks like it will continue for at least the short-term. If I had one thing to tell you, it would be to think of yourself, how you are doing, what you need, what you want, and to stay grounded in your body and feelings. When times are so intense and every day is unpredictable, when you visit your husband and cannot anticipate if he will be able to be present with you, it can be exhausting and just plain scary. You deserve a lot of support, and no one can give it to as well as you can give it to yourself.

You have been incredibly strong, and it is ok to take a break, and lots of rests. I absolutely do not know what Mike would do without you, AND you don't have to hold this whole thing together.

I respect how you are handling things, and you deserve to have whatever you need to be emotionally, spiritually and physically healthy now and later.
If you need to call on me, you know how to reach me.

--Georgia

The Brain said...

Yay! Hey everyone, Dr. Georgia is on the blog! Georgia - thank you for everything. I will probably be calling you very soon to ask advice about the family meeting and other aspects of Mike's care. Mostly, how best to communicate Mike's needs in a manner that maximizes the likelihood of getting the plan of care that I think is best (e.g.; not starting rehab until it makes sense to start rehab - although, I feel that given Dr. Andrews' comments, he and I are on the same page on this point.)

Thank you for everything.
love,
danna

Heide said...

Danna,

I am so glad you are sharing your feelings to the world on this blog. I have been chastised for wearing my heart on my sleeve and not playing my cards close to my chest. Poo on them! Everytime you share your angst with your family and friends who are reading this blog, we all try our best to take a piece of that suffering away from you and Mike.

Heide

Jenny S-G said...

Hi Danna,

The moves from one facility to another are incredibly stressful. When Mom was stepped down from hospital to skilled nursing facility, it was incredibly challenging. Getting to know all the new staff was suprisingly stressful. When there's so much uncertainty with our loved one, one confort we have is in the familiarty and routine of the caregivers at the facility. Having to start all over again with a new set of caregivers yanks away that feeling of comfort that comes from routine.

But, know that the new set of caregivers will be as capable and conscientious as the old set and within days you'll find the comfort return.

I'll be in Philly tomorrow afternoon and will give you a call . . .

Peter said...

Andy Gorman and I were there this afternoon at 3, but Mike was, contrary to schedule, at radiation therapy then. He was back by 4. His nurse, Vince, was giving him a couple of pills with some iced tea. He was sitting up, eyes open, alert. The room was darkened for some reason. He shook both of our hands when we announced ourselves. It was interesting: he was witty and sarcastic and clear and otherwise communicative in response to any one given question or comment, but the next question or comment he might not respond to at all. I took a chance and pressed him in one instance. "Did you hear Andy's question, Mike?" Nothing. (Gives you the impression that maybe he wasn't liking the question and wasn't going to waste the energy telling you, or maybe that he lost the question, or it didn't really register at all, perhaps in favor of sleep. I just can't tell. This was happening a bit last night, too.)

He was entering into what looked like light REM sleep from time to time. We asked him if he wanted to sleep, if he wanted us to leave. No real response. He was sleeping.

He had reported early in the visit that his appetite wasn't so good (he said that with that characteristic "what a drag" look on his face, scrunched up nose, and intonation that is so "Mike"), so we tried to get him to drink Boost. Vince agreed we should try to get him to eat or drink anything. I told him before he got sleepy that he seemed more "with it" today than last night and asked if he had that sense, too. He said he didn't know.

There is amazing variability in his responses. There are characteristic Mike-isms delivered no differently than, say, a year ago, and then there is unresponsiveness, and then there are what I think Danna described at the beginning as confabulations, some coherent some less so. These seem to all occur at the same time.

judi godor said...

my name is judi and I'm a teacher's aide at the Haddon Learning Center. I have been following in a small way your journey for the past several months and today we were given this on line address. I just wanted you to know I am offering my help if and when you need it. I know you have alot of help and I can see a grea support group behind you. However, if you find it necessary need help,shopping phone calls,babysitting Baxter etc. please feel free to call me. I live in your area and have lived in Westmont,Collingswood area most of my life so I know my way around. Call me 856-541-6574.I wish you the best Judi

Anonymous said...

HI Danna Banana,

Alright, sorry to use it, but it just makes me feel happier using a silly name from the past. I wish I could wrap my around around you now and turn on some silly video from the past and just bring you back to some happy times. Yes, I do still have all those videos. For those of you who don't know me, I have several videos of Danna as a teenager that invovles her doing "the running man" to M.C. Hammer, they are available to the highest bidder with the profits going to Mike for whatever "tactile" toys he might like! I get out of school on June 21st, so if you need some help this summer let me know.

Love,

Jenna

The Brain said...

Jenna! Shhhh! Me doing the running man? What is this "running man" of which you speak? Ok, I confess. I used to think I was the white "fly girl" dancer on In Living Color. Thanks for letting the cat out of the bag, Jenna! And thank you for the laugh.

love, Danna-girl (the other half of our two-person wide-load... Thank you Matt.)