Thursday, April 27, 2006

[Photo taken at Bethany Beach, MD in September 2005]

Today Jae (my sister) and I got to Mike’s room (6613 Jefferson Hospital of Neuroscience at 900 Walnut Street) around 1:15, anticipating that radiation would be done. Mike’s very unhelpful nurse, Vince, said that he was only just (at about 1 pm) informed that Mike was scheduled for radiation at noon. Later info suggested that the radiation info had not been communicated to Mike’s nurse for a reason: Mike had spiked a fever (102-103) in the morning and the nurse practitioners wanted to verify that it was still ok to go ahead with radiation with a fever present. Ultimately, the docs said radiation is a must and he was taken for his treatment at 2:45 pm.

Why do I think Mike’s nurse was particularly unhelpful? When I arrived, I had several uncomplicated questions: How much had he eaten at breakfast? What were the results of the CT scan from the night before? Who should I talk to to learn about the CT scan? Mr. Vince didn’t know the answers to the first 2 questions and told me that here at JHN, things operate quite differently than they do at Gibbon’s NICU, namely in a greater lack of communication between doctors, nurses, and patients.

“I’ve been working here 6 years, and I’ve never figured it out. It’s just the way it is,” said Vince. Funny thing is, Vince was the only particularly unhelpful person I have encountered over there. Perhaps his sweeping generalization is designed to lower expectations so that he can continue providing inadequate information. Bullshit. I called him on it in front of the nurse practitioner, asking if he had any plans on feeding my husband the lunch that was sitting still covered over on his side table (currently Mike can’t/won’t feed himself). “If I didn’t show up, was anyone going to feed his lunch to him?”

“That was the plan,” said Vince.

“It certainly doesn’t seem that was the plan. Considering the fact that no one can tell me if he ate anything for breakfast…”

Within 20 minutes, the tech came in, told me she was the one who had been with Mike at breakfast and that all he had was OJ. She also told me that they are now (perhaps following my chat with Vince) required to include in the report specific details of how much Mike ate. Good. Dammit.

In a fortunate coincidence, our favorite nurse practitioner from the Gibbon building, Judy (who has been with us since way way back in January) began her 4-month rotation at JHN today. Thank freaking G*d. When I found her she had been on the phone for an hour with various docs about Mike’s condition. She works directly with Evans and Andrews and was the nurse who watched as Mike spun out back in mid-March, calling the NICU from home just to see how he was doing after her shift ended. She also told us today that Mike was her favorite – she had the luck to meet charming Mr. Young back when he was all himself: funny, quick, kind, and very grateful for their attentive care.

When Judy went with Dr. Andrews on rounds this morning, apparently he said to her, “Boy do I know someone who’s going to be happy to see you!” (meaning me). I had told Andrews yesterday of my frustration with moving to a whole new place where we had to start over with nurses. It tickled me that he understood this, remembered it, and thought to relay it to Judy.

Mike’s condition according to Judy (as of 3 pm):

Mike’s been having high fevers in spite of three separate antibiotics that he’s receiving via IV. They are starting him on three new antibiotics today (also through IV). His sodium is too low (129). They are going to give him a large stress dose of hydrocortisone (steroid that mimics cortisol) and give him a chest x-ray to check for any infection. CT scan from last night shows that the fluid collection on the right frontal lobe is reabsorbing well. His ventricles look great (no hydrocephalus, so it appears the VP shunt is working). However, the cystic component of the tumor that is on the top pressing up has grown – even over just the past week. This alone could be wreaking havoc on the hypothalamus – giving him fevers, making him tired, changing his appetite. Tonight they took him for an MRI. (Side note: Since November, Mike’s had well over 35 CT scans and MRIs. Holy radioactive brain batman.) We’ll learn more about these latest developments tomorrow. Given the speed with which they’ve conducted these new tests, I know they are on top of it.

Notes to friends:

Please read the latest blog entries prior to your visit to Michael. It will help you understand what to expect and it will help me speak to you about your visit without having to provide backstory.

When you visit Michael, if he continues to be the way he is now, he will likely nod off throughout the visit. He’ll likely remember you (your voice) and your nickname and be able to ask about your spouse/kids/job.

What kinds of things can you do when visiting? Encourage him to drink (particularly “Boost” the protein drink that is helping him get some calories in). Ask him is he’s cold/hot. Give him his stuffed lion (Hobbes). Talk to him about your day and mundane stuff going on in your life. If he’s hard to rouse, don’t be afraid to say something like, “Hey Mike, can you open your eyes for me? It’s me, blah-blah-blah. Just coming to keep you company for a little while.” If you ask if there’s anything you can do for him he will always say no. You’ll need to ask specific yes/no questions. If he gets tired, don’t be afraid just to sit there with him, or even read to him about anything at all – even as he’s sleeping.

And finally...

My sister has observed that I may be quite a bit farther down the road in accepting the reality of Mike’s situation than most people. This is simply due to the amount of time that I spend with him and the extent of the complications that we’ve experienced over the past 5 weeks.

As a result of my being farther down this path, when folks tell me that Mike’s “going to be fine,” or “If anyone can beat this, it’s Mike,” I don’t find it particularly helpful or uplifting. I understand such statements are coming from a place of hope and encouragement, but right now they feel hollow to me - especially if people don’t have all the information concerning Mike’s condition.

As I was describing it to Kevin, if people are several steps behind me down this path, I do not want to be the person to bring them abruptly to the place where I currently stand. And, in fact, I have found that when I do that, it’s met with resistance and even a sense of frustration with what is perceived as my own pessimism or lack of faith in Mike. I have a 16 month old son and my best friend and teammate is in a situation that has very little dignity. If I am going to have any hope of getting through this, I have to keep my eyes open.

I continue to have hope that one day Mike will read this blog and say, “Shut up! This never really happened… did it?” And we’ll all chastise him endlessly. But until that day comes, I need to be cautious and realistic. Please don't take it as a lack of faith in Michael. Mike is an unbelievably strong person. (In fact, given what he's been through, any lesser person wouldn't be half as fun to be around). I'm simply doing what I need to do to protect myself. That's all.


Anonymous said...

My dear Dannagal,
Yes, we all share your hopes and dreams for you and Michael and Baxter. You are in a different place than the rest of us; in that, you are his advocate and his partner every step of the way in this unknown "journey". You have a grasp of the reality of the situation that some of us do not have.

Dad and I are ready to join you and Jae on late Saturday afternoon to assist you in any way we can.

We admire you.

Love you,
Mom and Dad

Jorsh said...

I visited Mike tonight at 5pm. He was as Danna described. I spoke to him for about 25 minutes, but he never responded. He grunted once or twice, but went on "sleeping". At about 5:25 a doctor came in, identified himself, and asked Mike how he was. Without a pause, Mike replied "I'm ok." Mike answered more questions, all with his eyes closed. I said again "Hi Mike". He replied "Hi Jorsh". Later, I met Nurse Vince, who knew little about Mike's condition. When two technicians came to get Mike for the MRI, they refered to me as Mike's son. What? They said that Vince told them that I was Mikes son. Vince is truly brilliant. They looked at me and realized it could not be true. I said that was older than Mike, and I laughed. Then, I looked down and saw that Mike was laughing, too. Eyes still closed. The point of all this is that, when you visit, Mike is listening and understanding all/most/much of what you say, even though he does not respond and has his eyes clothes. Moments of confusion will come and go, but I believe that it is still mostly Mike. A lack of response does not mean that he doesn't hear or that he doesn't benefit from what you say and your voice. He shook my hand goodbye.

Dr. Andrews came by and we chatted. He discussed the pressure of the tumor and the cyst as their top priority. It is putting pressure on the hypothalamus, which is causing him to seem to sleep all the time.

Danna- Mike ate a bit with the help of the technician. Salmon and green beans. Andrews said he would be coming around tomorrow in between surgeries.

The Brain said...

Josh - thanks for the helpful info. Sounds like Andrews is truly on top of it... whatever "it" is. Thank you so much for your visit tonight and for the update.

And...Mike's son? That nurse is just a toolshed. A shed full of tools.

Cheryl said...

Danna -

As one of the people that checks in on the blog every day, I also want to acknowledge how incredibly strong you are as a person. Not only are you going through all this, but you are helping all of us through it - keeping us close to Mike and your family through places that are awful, poignant, and hilarious. I miss the old Mike and I miss the two of you as a team and, yet, I am so grateful for your willingness to keep all of us a part of your lives.

karenle893 said...

Can I come and Kick the crap out of Nurse Vince as soon as I am better?
Pretty Please.
I'll even use my most queensian accent as I lay him out.

Danna, I love you. I read your blog obsessively.

You are the best advocate and partner for your beloved and an amazing font of strength, for Mike, for Baxter and, even though we should not be your concern at all, for us, too.

I only hope we are doing enough for you, amazing one.

Would bubble wrap be fun for Mike to play with, you think?? I have a ton of it.


Anonymous said...

A nurse named Vince who thinks Mike is Josh's dad. It would seem that the fates have provided you and Mike with comic relief. Thanks for all your sharing. Keep doing what you have to do for yourself and your family. Your incredible love and ability to accept what is won't steer you wrong.
Karen, please give Nurse V a good swift kick for me too.

csm said...

I stopped by the 6th floor tonite... and Nurse Vince (now known as Nurse Dunce) was too busy gossiping with other nurses to assist me. (And when he did grace me with his attention, he was clueless... total tool for sure).

My immediate impression of that unit is not positive-- and I completely back you up in wanting to kick some serious nurse ass. If you and Getzie need back up, just let me know. I'll be PMSing in the next week -- so I'll be RARIN' to go...


Anonymous said...

danna i totally get the being realistic and grounded piece. same thing with my dad -- anyone who communicated some sentiment of "oh he's going to be fine! i know he'll get through this!" i wanted to shoot. at the very least i wanted to totally ignore. because you feel like no one understands the gravity of the situation and also, as a result, no one can possibly understand what you're going through. "hollow" is the exact right word. we all need to trust danna as she is the most informed. i agree also, it is not pessimism it is realism. and it's the only way to get through this! xoxo, t

Diane C said...


I seriously doubt that Nurse Vince has any idea of what he is in for with the number of people coming to kick his ass literally and figuratively. He certainly isn't prepared for the scrutiny he will be under.

I suggest that if he doesn't shape up, that you contact the Head of Nursing Services to complain about him. Probably his co-workers know he is a slug as well.

Thanks for the heads up on the unrealistic optimism. Having been on both sides of this, I can understand that it comes from people wanting to keep you standing up and strong, but yes, it can become rather irritating to the point of being screamingly blunt with people.

I also think it comes from an underlying fear about facing such unknowns; not many of your friends have had to do this (yet). Mike's and your struggles are an eye-opener about many issues--the fragility of life, the business side of healthcare, the beaurocracy residing in a large hospital; none of this is appealing to look squarely at.

What IS appealing to look at is you and the way you are functioning, communicating and advocating for Mike and keeping this blog. Like you said, maybe Mike will someday look at this and say "Holy Smokes"!--he'll join the rest of us in total respect and appreciation and affection for your awesomeness.

aka Diane
aka Diane and Kell

Kim said...

hi - i'm a lurker, a friend-of-a-friend who is also a surgical oncologist and mother of a 6-month-old. i hope it's not too weird that i'm following the lives of people i don't even know. i feel your pain from multiple places.

anyway, i had to speak up when i read about the nurse issue. i recommend talking to the charge nurse for the unit, explaining your concerns, and possibly requesting that this nurse not be assigned to your husband. if enough people were to do that, he would soon be out of a job. or at least he would be forced to shape up. i understand uncomfortable position of advocating for your family member without pissing off the people who are taking care of him. tough place.

you are doing an amazing job with predicting problems and trying to set up systems to anticipate and deal with them. i wish all of the family members of my patients were so proactive.

anyway, like i said. . i hope this doesn't creep you out. you have the thoughts and prayers of a total stranger, in addition to your wonderful circle of friends and family.

The Brain said...

Kim - don't know who you are, but thank you for the wonderful posting. I love that you're lurking. I think of it as a huge invisible safety net that I fall into every night as I write. Thanks for the encouraging words - and enjoy your 6 month old. The fun is just beginning.