Monday, May 8, 2006

[Photo: July 2002 in NH at our favorite - Cliff Lodge Restaurant]

Yup – every day is different. Today is a good day. He was really alert this morning. Nurses said he was oriented to time and place first thing this morning– knew he was in Thomas Jefferson University Hospital and knew the year was 2006. He ate a great breakfast and a great lunch. Did some PT in early afternoon – walked with a walker and was able to tap a balloon back and forth with me. I gave him a thumbs up and he could see it. When he was walking he was clearly listing to the right and had a hard time seeing things immediately to his left or right, so had a tendency to walk into things. But it was great to see him up. After he did a little PT, he was so much more alert and awake. Said a lot of things that were very Mike-ish. Knew he worked at Discmakers, knew what departments he managed, knew how many employees he supervised. I told him I had hired someone to mow the lawn and he grinned a Mike grin and with a little nod said, “I support that.”

He got really tired in the afternoon as would be expected. The cardiologist, Cindy – who works with Dr. Mandel - came in. I love her. I do. She’s so sweet and chats about big picture things with me and reminds me to think back two weeks and compare Mike’s condition now to his condition then. Some people are just very calming and she’s one of them.

I told Cindy that I felt so out of control in this situation that I was making up tasks just to feel useful. I was reminded of the headline from the Onion in their first issue post 9/11. It was something like, “Woman, desperate to do something, bakes American flag cake. All the shit all over Mike’s bulletin board and walls in the hospital room – that’s my American flag cake.

With Josh’s help and the recommendations of Dr. Wisoff at NYU, we’ve identified some doctors who specialize in craniopharyngiomas to ask for additional opinions. I got the paperwork done to have all of Mike’s 40+ CT scans and MRIs sent to these doctors, along with Mike’s inpatient records since the fall, surgical notes, and current file from this hospital stay. Not a simple task. You try asking a file worker to make three copies each of 40 scans from a period of over 6 months and can they FedEx them to these three doctors?.. blah blah blah. Not exactly at the top of their list of things to do. And you know what? The "brain tumor card" doesn't really work in these circles 'cause everybody they see has some life or death something they're dealing with. So you're thinking, did Danna break down in tears? Yes indeed - lost it while trying to get "Carmen" in radiology to get on top of this request. Worst part was, she really didn't seem shaken by my freaking out. Must happen every day.

I know several of you have sent me suggestions for reputable neurosurgeons around the country, and I have researched all of them. The key for Mike’s case is identifying excellent surgeons who have a lot of experience with this particular kind of tumor. There are only 300 cases of cranios in the US every year, so unless a doctor specializes in it, the opportunity to work on these tumors doesn’t come up very often. Evans and Andrews are up around 30, which is a pretty decent panel.

The docs who I’m trying to have review Mike’s case (in addition to Wisoff at NYU):

Robert Spetzler, Phoenix, AZ
Edward R. Laws, UVA, Charlottesville, VA
Chandranath Sen, M.D. Roosevelt Hospital, NY, NY
Possibly Keith Black, Cedar Sinai

A huge thank you to Josh for his help with this. Writing all these letters and figuring out how to go about finding these people and releasing Mike’s records would have been too much for me right now.

In the event that Wednesday's meeting with Evans does not give us the information we need or if we do not feel like we have an acceptable plan AND if one of these other doctors is convinced that he has a solution for us that seems reasonable, we'll have a huge decision to make. The thought of moving Mike to one of these other cities, and my staying in a hotel and having to be away from Baxter for a period of weeks is not that pleasant. But I'll do whatever we need to do to give us the best chance of getting Mike back. My hunch is that it won't come to that - that these opinions will simply help better inform our plan of action here in Philly - but I certainly haven't ruled out the possibility of going somewhere else.

We shall see.


Jalena said...

Oh my. Hint I should have given you earlier. Each time he has an MRI, CT scan, ask for a copy before they do it. Then when they make theirs, they can make yours. Its a good idea to have them even when you arent asking for other opinions. For one thing, you can look at them yourself when you have time and really see what the doctors are saying. They usually flip them on and off the screen so quickly, that your head is spinning. And sadly, hospitals loose theirs. Unbelievable, but the do seem to get misplaced too often. Then there is no recent comparison. Thats when you can say, got it, will bring it in. You can also request copies of lab reports. You say he is listing when walking. How long has it been or have they done a vision field test? You might want to have another one done to see if there is a change in side vision, (just realized I cant remember how to spell the word for side vision!) Anyway, thrilled that today was good. No longer than I've been reading, I think the good days have been more than the bad?

The Brain said...

Thanks, Jalena! I had no idea that I could request that with the scans. man, the things you learn. And mike is probably due for a field test again. I'll talk to andrews and evans about it. It sure is good to have someone experienced in this stuff looking over our shoulders! Where did you come from, Jalena?

Carmine said...

Danna, I won't have an opportunity to be on line later today or tomorrow, but before it was too late, I wanted to wish you well for your meeting tomorrow. Please know that we keep you and your family in our prayers and we'll be thinking of you tomorrow.

Carmine & Debbie

Jalena said...

I come from the Confederate South where we still shoot Yankees like you but aw shucks, you, Mike and Baxter have wormed your way into my heart so I'll have to make an exception for "ya'll", she says smiling!!! I so hope your talk with the doctors goes well tomorrow and you can get all your questions answered. Another hint. Its good to have someone with you to help remember all that is said and if you cant, its good to have ALL your questions written down and be sure they address every one. You wont get these meetings all that often. Some people take tape recorders and record their meetings so they wont forget what is said. You think you wont, but when alot is being discussed, sometimes it happens. I counted, there are more good days than bad on here, a little more than 2 to 1. They may not be perfect days but they are better days and those count!!!