6.07.2006

Wednesday, June 7, 2006

[Mike’s room at Magee. Bed is covered with a
protective netting to make certain he doesn’t get out of bed unattended.]
Read more below
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Lots of helpful details about the logistics of visiting Mike at Magee included in this post. Read on...

Yay! We’re at Magee now! And Mike is responding great to the Decadron. He’s back again. So great he was sarcastic and funny and even remembered that today he would be moving to Magee rehab (about 1/2 hour after we had talked about it). He’s getting 8 mg of decadron now and the tapering plan over the next 2 weeks brings Mike no lower than 4 mg. It was clear to everyone that 2 mg was too little. At least for the level of edema he has in his midbrain right now.

Today he left JHN at 11 am in an ambulance. The nurses were so sad to see him go. There were tears all around. We’ve been with them for 6 weeks. I was sad to say bye to everyone there. They’ve seen us through a very difficult time. It was especially emotional to leave them because this morning he was better than he has been in a couple of weeks. It was nice to have Mike awake enough to say goodbye to people are give hugs.

At the same time, Magee is great! It feels so good to be out of a hospital environment. No more wires and monitors everywhere. Within an hour of moving in, I was met by the case manager, Cynthia, who talked about big picture plans and how they work at Magee. I then met the nurses, the nursing manager, then Dr. Rommel (Mike’s physiatrist), and the speech pathologists and the physical therapist… all between noon and 3 pm. I also saw Dr. Georgia who's on rotation there now! She had given the case manager a heads up that we were coming in. So great to see her. I felt welcomed and taken care of. I could tell that Dr. Rommel had read Mike’s chart and knew all the details of his meds, past surgeries, problematic sodium issues, vision problems etc.

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Information for visitors:

Magee is located at 16th and Race. There is a parking lot behind Magee on Spring Street between 15th and 16th.


Mike is on the 4th floor in room 468 (bed by the window).

When you visit, you need to sign in at the main desk downstairs in the lobby. Take the elevator to the 4th floor. Follow the signs in the direction of room 468. To open the various “locked” doors, you need to simultaneously press the little button on the wall while you open the door (opening the doors with arms full of things is quite difficult as I learned today). If, while visiting Mike, you want to get him some ice water, the lounge with ice/water is located in room 440. The doors in the brain injury rehab unit are locked from the inside to prevent patients from leaving unattended. To unlock them you need to press in a code into the keypad by the doors. All doors have the same code: 7451* .

Visiting hours during the week are limited to 4-8 pm because they do a lot of therapy during the week in the daytime.

However, on the weekend, visitors are welcome during expanded hours:

  • Saturdays between 2 pm and 8 pm
  • Sundays between 11 am and 8 pm
All patients in the brain injury unit eat dinner together with nurses in the unit’s dining room between 4:45 and 5:30 pm. No visitors are allowed in the dining room while patients eat. It’s considered too distracting – and if you’ve dined with Mike, you can understand that this policy makes sense. But, if you arrive at 5:30 pm, he will already have eaten and will be back in his room. You are welcome to eat your own dinner as you chat with him. You are also welcome to bring him yummy treats to eat if you’d like. He’s on a regular diet here at Magee – and the food is g.o.o.d. They have a cafeteria on the 2nd floor (that’s CHEAP!) and the items in the cafeteria are the same ones that the patients eat. Today was grilled cheese and tomato soup.

* Until they get to know Mike and he demonstrates that he’s not going to get up and leave or engage in other unsafe behavior, he has a large netted canopy over his bed that zippers closed on all sides from the outside. It looks like something out of the movie E.T. But while you are visiting, you can unzip the side facing the window. Just make sure that it’s closed when you leave and if you step out of the room for any reason. My hunch is that this netting will be taken down soon, but it’s a little jarring to see him in this “cage-like” thing if you’re not prepared for it.

He has a phone number, but his phone is on the side table next to his bed where he can’t really reach it. Maybe in a week or two he’ll be up to getting the phone. His phone number is 215.587.3293.

The draining of cysts is probably not going to happen until early July. Mike’s appointment with Andrews is set up for 3:15 pm on June 29th – three weeks from now.

8 comments:

Kate Holzemer said...

Hi Brain!

My name is Kate, I am an old friend of Mary and Tom Javian. I have been reading this site for about a month. Please let me express my very most heartfelt support for you and your family. Baxter is amazing and beatiful, and you and Mike are so brave. I cannot imagine being where you are. This website is such a beautiful testimony to your love for Mike.

Dana, although I have never met you, please know that every single day I think of you and your family. I am not exactly a religious gal, but for lack of a more eloquent expression- I am praying for you guys. I can't imagine a wife and mother doing a better job.

For what it is worth, I think Mike's new bed looks like some sort of magical fairyland canopy bed- at least in the picture.

Congratulations on a successful move.

Sincerely,

Kate Holzemer

The Brain said...

Thanks, Kate! I've heard about you for years. Hope to meet you someday.

x0
danna

Arizona Kate said...

Hi Danna,

Glad that the transition to Magee is going so well!!! That's great!!! Sounds like an excellent place.

How large is Magee? How many nurses and patients?

Thinking of you,
== Kate K.

The Brain said...

Hi AZ Kate! I think Mike's unit only has 17 beds... not sure how many nurses. It's an intimate setting - not at all like a hospital. More like an upscale home for old people - only they're not old.

Hi to Jeff, mom and dad, and the kitties (not the scorpions, though - no greetings for them).
love,
danna

Anonymous said...

That tent might seem like a pain, but it has an added bonus-- Mike is safe from bird flu in there!

:)
Colleen

Anonymous said...

That tent might seem like a pain, but it has an added bonus-- Mike is safe from bird flu in there!

:)
Colleen

Anonymous said...

Hi Danna,
I had to log on to see how you and Mike made the transition to Magee! My prayers and good wishes are with both of you. I am truly in awe of the strength of your love for each other and the grace you, Danna, have shown throughout this difficult time. And you did it all with a smile. James Brown rocks on! So do both of you. Kathy

The Brain said...

Thanks, Kathy! We love it at Magee. I'm so glad we're here, now. Thank you for everything.
love,
danna