Friday, June 30, 2006 - afternoon

No bad news - but no good news, either.

Well, we've been on the edge of our seats for so long... what's another week, right?

Andrews and Evans attempted to perform the procedure this morning. They made three passes with two different kinds of needles. Unfortunately, it appears that the walls of the cyst are so tough, and the cyst itself is so pliable and has so much give, that it refuses to actually puncture. It's like the difference between a very full water balloon, and a partially full water balloon. One pops very easily, the other not so much.

Good news is, Mike looked great post-surgery. And in a weird turn of events, in my opinion looked more normal that he has looked for months. I asked Andrews if pushing the cyst inward away from the temporal lobe could have in and of itself relieved pressure.

His response? "With Mike's tumor, anything's possible."

The plan now is to attempt a craniotomy on the left next friday, July 7th. Rather than sitting around in the NICU for 6 days, they have arranged for Mike to be readmitted to Magee to resume therapy for these intermediate days. He's scheduled to return to Magee tomorrow at noon. I am very pleased with this plan. Not the craniotomy, obviously - but with the return to Magee until surgery starts.

So there you have it. And no - surprisingly, I'm not falling apart. I have stopped investing all of my emotions in every detail of Mike's case. It's a self-protective mechanism, but it is serving me well. I am the best advocate I can be for Michael, and I am there for him to get him the best care I can. However, that doesn't mean having high expectations at every pass. It also doesn't mean being "in it" emotionally all the time.

I guess you just adapt.

Happy Holiday weekend to all, and please hang in here with me. Someday this drama has to end. right?


Thursday, June 29, 2006 - evening

[photo: frameless stereotactic brain surgery using image guidance system]

Surgery is scheduled for first thing tomorrow (Friday) morning – starting between 7:30-8:00 am. It will be performed by Dr. Andrews in Mike’s current building (JHN at 900 Walnut). I will wait in the waiting room on the 6th floor just opposite the elevators we always take up to see Mike. Feel free to join me, but only if you bring me chocolate, trashy mags, or vanilla coffee (with milk and sugar).

Andrews is going in from the left – but not through a craniotomy. (Thank gosh). He’ll be doing a stereotactic drainage (frameless) using an image guidance system – guiding a catheter to the cyst through the left side. There will be only a small incision, and he’ll use a teflon device as well as a GPS-like system to map the exact trajectory and depth needed for the procedure.

It should be a short procedure, but there are still risks – not likely risks, but large risks all the same. Andrews described the potential risks including: encountering the vp shunt and causing bleeding, having trouble piercing the cyst and causing more damage midbrain, as well as some potentially “catastrophic” consequences involving the major arteries adjacent to the cyst.

All that is to say that even though it’s straightforward, once again – it is brain surgery.

Last night the decision was made along with Dr. Evans to not do the craniotomy. Since Evans is the only one who has been in Mike's head with everything opened up, Andrews says he really takes into account what Evans has experienced. Since that last open craniotomy was such a “harrowing” experience, Evans did not support the idea of another craniotomy. His take, with which Andrews now agrees, is, “save the craniotomy on the left for when we absolutely have to open up to get inside.”

At the end of our 5 minute phone conversation, I said, "I’m also calling to make sure you’re not out having too much fun because you have an early morning surgery tomorrow." He told me he was behaving himself and seemed amused by the statement. I asked if he got calls like that all the time, from anxious spouses making sure he was getting a good night’s sleep before surgery. He said, “Well, yes. But, you’re special.” I like that.

In the event that this procedure does “the trick,” Andrews does not expect some sudden “Mike is back” moment to occur immediately post-op. No matter what, the damage to the midbrain region needs to continue to heal – and that area will likely be aggravated by tomorrow’s surgery. I’m saying this for my own benefit as well as everyone else’s...Let’s not get discouraged if next week Mike is looking quite a bit like he looks right now. It may take time for the relief of the pressure to have a positive impact on his neurological functions.

Ok. A quick note to whatever it is that makes good things happen to good people - be it God, the sun, or just charma -

Dear powerful thing whose existence has been in question since I studied political philosphy in college:

If you have been listening to the many people who love Mike, you know that we'd like him back to play. We know it's possible. It would be one of the most life-affirming moments of our lifetimes if, as a result of this procedure tomorrow, Mike has the opportunity to live a life of autonomy and watch his son grow up.
And quite frankly, Mike getting well could simply put the last nail in cynicism's coffin.

And yes, I realize you may not read blogs - particularly if you are, in fact, the sun - because if you're the sun, then you probably don't have internet access. But in the event that you do...

Please bring Mike back.


Thursday, June 29, 2006

[photo: the calm before the storm]

Talked with Dr. Andrews and Evans' nurse, Kelly this morning. Mike is scheduled to have the procedure done Friday morning with Dr. Andrews.
Yesterday Andrews performed 7 surgeries. Today, Andrews is out of town, so Evans is acting as both of them, with an insane operating schedule at both JHN and the Gibbon building. I think the decision to move Mike to Friday was less about the details of Mike's case than simple scheduling issues. I like the fact that Mike is currently Andrews' only surgery scheduled for Friday. As I said to Kelly, "That makes me feel good. It means Andrews will be relaxed and not rushed, and can take time to do a good job." Kelly laughed.

I'm thinking that I need to get prepared for the drama that comes with surgery.
If Mike has a craniotomy tomorrow (Kelly said she wasn't sure if Andrews has decided on an approach yet) then the next week is going to be emotionally and logistically difficult. I'm going to take a nap this morning and see Mike this afternoon... embracing the calm before the storm.

I hate when Mike has surgery on a Friday. Weekends at hospitals are like dead time. Not a lot of doctors or n.p.s around... Everything is just slower to happen.

Plus, Bax doesn't have childcare on weekends.
Sunday, Heide and Daniel have offered to be with Bax for a playdate with their daughter Hazel (also 18 months)... That will allow me to be at the hospital for a few hours in the middle of the day. But Saturday I will need some help with Baxter here at home. If you're interested and able to hang with the Baxman from about 9 am - 1 pm on Saturday, please let me know. He's a happy and healthy right now and lots of fun to be with...


Wednesday, June 28, 2006 LATE morning - edited at 10: 45

Added and changed at 10:45 am:

Nope - today will not be the day.
Rumor has it that surgery will not be until Friday. Mike's nurse Nicole (yup - sweetie with glasses), told me she got a call from Andrews' nurse saying that it will be Friday. Still not sure which approach Andrews and Evans will choose for the surgery (see last post). Very glad I decided to go to UDel today. I might actually have a productive day.


Reminder - Mike's at JHN (900 Walnut Street) in room 6604 with all his old favorite nurses, techs, and n.p.s. They are taking great care of him. If surgery happens Thurs, it might be at Gibbon (with Evans) - i'll let you know.

I don't know what to do with myself. I can't sit around all day waiting for a surgery that might not happen, so I'm going to UDel for the morning.

I've been distancing myself from Michael for so long just to maintain my own sanity, that it feels so crazy to entertain the idea that after this procedure, he might wake up and say, "What?$*# It's June??? Where the hell have I been?" I put on pearls today... as though he might just pop back to life and appreciate my putting on pearls.

But no one knows what to expect from this. I can't count the number of people who have asked me when we might expect the drain to improve Mike's memory etc. No one knows. No one knows. They don't tell me anything. Because they don't know. Trust me, it's the question I ask all the time. But I have no answer. That piece of information is so important, I swear that the second I get a sense of it from the doctors, I will post it on this blog. I doubt that moment will ever happen though - cause they just don't know.

Last night I was feeling antsy and a little whacky. I put Bax to bed, did some on-line grocery shopping, and sat out on my back porch drinking wine and watching the fireflies. I heard the PATCO high speed line in the distance and briefly considered calling someone to come sit with Baxter so I could grab the train into the hospital. It's a 10 min walk to the station, a 12 min ride to 9th and locust and 5 min up to mike's room. That means 27 minutes and I could have been right there cuddled up with Mike in his bed. But I almost feel like I can't do that anymore. I tend to go nuts before his surgeries and fear that he might not come back to me afterwards. But, we've been through it too many times for me to put it all out there again. I can't invest it all once again, cry my eyes out because "who knows if I'll see him tomorrow." It makes me insane. I made a bunch of calls to folks to help get me back on the ground, but no one was home. Thank gosh my friend Russ called me back and we talked about school and other stuff for like an hour. I needed to get grounded.


Tuesday, June 27, 2006 afternoon

Short version now - later version to come....

Mike's looking good. I reviewed the MRIs with Andrews - comparing May 10th to yesterday (June 26th) side by side. Swelling in midbrain is much better now. It extends a shorter distance out and appears less bright on the MRI - which is good. Believe it or not, the solid component of the tumor appears quite a bit smaller due to radiation - something that we knew was possible but not necessarily to be expected. This is very very good news. The cyst on the top appears slightly smaller as well, but the cyst on Mike's left side (growing out of the back left of the solid tumor) looks bigger. However, it also looks like one large bubble, not so much like a complicated multi-chamber thing.

All of this is good - but the only thing that's tricky is that the route they were thinking of using, drilling in and using a needle to come in from the right... is complicated by the fact that the biggest part of the cyst to get at is on the left. Going in from the right with a needle is pretty much going in blind based on mapping coordinates. Going in from the left might be possible because of the access granted by a clear fissure in brain tissue that divides the hemispheres. However, going in through the left is always less desirable because the left is the dominant hemisphere. Also, Andrews thinks the clearest path might be through a craniotomy on the left, granting open access and good visibility once inside. Obviously the thought of this makes me sick, but I can understand the logic.

All of this is up for grabs right now - but will be decided tonight. Surgery will happen tomorrow or Thursday, depending on Andrews' schedule. Andrews seems really positive about Mike's progress, and optimistic about what the cyst draining might bring.

There's a lot hinging on the outcome of these next few days. A whole lot. I feel anxious but also excited.


Monday, June 26, 2006 evening

Mike is looking great. They've upped his dose of Decadron to 6 mg every 6 hours (so, 24 mg/day) rather than 6 mg twice/day.

I must have really hammered home my points about the problems posed by IV fluids and the need to be catheter free because they discontinued the IV and have been time-voiding Mike every 2 hours all day with no problem. Everyone's on board.

I have put signs up above his bed that say, "Please no catheter. Time voiding (bringing to bathroom or handing him urinal) every 2 hours works great" and "Please refrain from giving IV fluids. Sodium is sensitive and tends to drop too low with IV fluids." I'm hoping this will give people pause before doing anything different.

I got to the hospital at 2:30. Mike has just taken a spill. They had him sitting up in his chair and he was looking great, but he heard laughter in the hall, thought it was "The McCormicks" and got up to walk out to see them. (yeah, thanks, Scott. Your fault.) He buckled and scraped his arm on his bed frame. Nothing too serious, but it freaked him out a bit. The good news? about 20 minutes later, he still remembered he had fallen. He was also recalling his nurse's name. Shamelle was amazed at how well he did at lunch. PT/OT even got him up walking already and everyone is thrilled at how much progress he's made during his 3 weeks at Magee.

MRI was done this morning. I saw the films, but the report hasn't officially come back yet. Scans show there are still huge cysts in there. I don't really know what I'm talking about, but they look bigger to me than they did in the mid-May scans (the last ones I saw). Still lots of swelling in there too. The solid part looks the same size, though. I'm hoping Andrews will lay out a plan for us tomorrow.

Mike is in good hands and doing well. Feel free to visit him. Visiting hours at JHN are from 12 noon until 8 pm. I'm counting on our circle of friends to help be Mike's advocates. Quite frankly, I'm just too tired to do it all the time. It takes so much mental and emotional energy to gear up to go in to the hospital and fight the good fight. It's like prepping for battle every day. Not cause the docs/nurses are working against us, but because it's easy for things to get off track. I also feel like Bax has gotten the shitty end of the stick over the last 3 days and I don't like that feeling. So, visits to Mike - particularly those scheduled on the calendar that I can see - are welcomed.

thanks. love, danna

Monday, June 26, 2006

Latest from 7-9 am this morning:

Mike is responding well to the IV stress dose of Decadron.
They started it last evening and through the night and this morning he's talking again, can tell the nurses about Baxter and me and is responding quite well. Basically, he's back to where he was prior to the freaking taper starting last Thursday.

He got a CT scan last night and will get his MRI this morning.

For some reason, they listed Mike as NPO last night (no food or drink except with meds) - maybe because they thought he was too lethargic to swallow safely. But, that is a problem because when you're NPO, they automatically put you in the computer for IV fluids at like 80/hour or something. Nurse Seta (who was Mike's night nurse a lot when he was at JHN for 6 weeks in April and May) talked to me this morning and mentioned Mike was receiving IV fluids. I told her I was not comfortable with that. In the past, when Mike has received IV fluids and received his DDAVP to control his Diabetes Insipidus (the disease that makes him pee out all his fluids) then he retains too much water and drowns, dropping his sodium to the low 120s where Mike does not do well. I talked to Seta and N.P. Jaymie about getting Mike off of the IV fluids and just having him drink to thirst like he has been. For the past 2 weeks at Magee, this equation has been perfect, maintaining his sodium at around 135-140. Jaymie remembers this whole sodium saga and is going to work on getting him off of IV fluids.

I also chatted with Jaymie about how Mike is technically considered "continent" at Magee. No, he doesn't bring himself to the bathroom, but if he is brought to the bathroom every two hours, he does just fine. No accidents. At JHN they put a Texas catheter (the condom-like one) on him last night because he was peeing a lot with the IV fluids and wasn't awake enough to get up at all. Now that he seems to be responding to the Decadron, I told them it's my priority to get the catheter OFF of him and have the nurses and techs bring him to the restroom every 2 hours. We can't afford to backslide in this department if at all possible. And a huge thank you to Jalena for helping me stay strong on this point. She's been a great pep-talker for me on email.

A huge thank you to my neighbor Loren who dropped everything - including going to her daughter's friend's b-day party - to take care of Bax yesterday morning while I rushed to the hospital. A huge thank you also to Liz who came down for a visit with baby Noah (12 months) only to find herself taking care of Baxter and holding down the fort in the afternoon while Danna dealt with the drama at the hospital.


Sunday, June 25, 2006 evening

Mike was readmitted to Jefferson Hospital for Neuroscience ICU this afternoon. He's in room 6604. Same room we had for part of our stay back in May.

He's become increasingly unresponsive over the last 24 hours, so the folks at Magee wanted to make certain that he had an MRI and was under observation. Dr. Georgia was the Doc on call at Magee this morning and today. She called me at about 9 am to tell me that they weren't comfortable with Mike's decreased condition over the last 24 hours, so they gave him a dose of 10 mg of Decadron at 8:30 am. (recall the taper from 8 mg 2X/day to 6 mg 2X/day started Wed and continued through last night).

Everyone's (Dr. Georgia, Dr. Evans, and Dr. Andrews) hunch is that the downslide is due to the taper of the steroids, but we need to be sure. Having Mike admitted to JHN means that if it's not just the steroids, we're somewhere where they can take care of things. Plus, having him there as an inpatient means that the MRI and observation by Andrews can happen with fewer logistical problems. Plus, if they want to go right ahead with the draining of the cysts, he's already at the hospital.

Seeing Mike doing so poorly is crushing. Not able to open his eyes for more than a second, not really able to follow instructions. Not able to get out of bed. Not answering questions.

It's been a rough day. I don't really know how much more one person can handle.

Sunday, June 25, 2006

[The key to a fun Saturday night in]

I woke up this morning in the middle of a vivid dream.
I was at a funeral. It was packed full of people, tons of flowers, and I was sitting next to two residents from Magee. It was inside a Catholic Church and everyone was dressed nicely. Except me. I was in a t-shirt, shorts and flip-flops, in the second row. I wasn't upset, though. Bitter, but not sad. The female priest (?#) was talking at length in flowery prose about whomever was deceased. She then recited a long list of medications... hydrocortisone, levoxyl, decadron, ddavp, heparin, provigil blah blah blah.... Who talks medications at a funeral? I started mocking the whole ordeal with the friends around me. My sister and I shared a glance and rolled our eyes.

I thought the funeral might be Mike's, but then I looked down past my sister, and there was someone sitting in a wheelchair. I think it was Mike. He wasn't doing great, but he wasn't the one in the casket up in he front of the church.

Yesterday wasn't a great day.
I brought Bax in to see Mike. Mike was out of it again. One day of "off" Mike can be a fluke, but two days = a pattern. So, I roll Bax down to the nurse's station and ask to see Mike's labs and his medication list. Sodium has been normal (140). I ask about the decadron dosage. Answer = 6 mg 2X/day. Six? Why six? I thought we realized that 6 was too low (See post from 6/17). So back on June 17th they upped it to 8 for the foreseeable future. Well, the reports show that they tried the taper - again - starting the evening of June 21 (Wednesday). It usually takes about 48 hours for Mike to downslide once they cut back the steroids - which explains why he looked like shit on Friday.

So, what exactly is the difference in Mike that tells me something's off?
He is literally unable to follow instructions. You ask him to move to the left and he can't. You ask him to look up and he can't. He can't process information. He's sleepy - emotionally flat. Takes a long time to respond. Sometimes can't respond at all. Will do things that don't make sense and doesn't know why he's doing them. It's heartbreaking to watch. Having been around it so much, I feel like I am better off leaving than sitting there watching him float around in this world of confusion.

So, yesterday, I talked to the resident on duty and explained my concern. Talked at length with Dr. Georgia about it last night, too (she's still on her rotation at Magee, and is very familiar with Mike's case, though he is not assigned to her). I realize that being on decadron at such a high dose for such a long time is weakening his adrenal system and that it makes Mike far more succeptible to other illnesses. But I also know that he has HUGE cysts in his head. We have our appt with Dr. Andrews in 4 days (Thurs). Hopefully he'll schedule the surgery for the week afterwards. Until those cysts are gone, Mike's brain is under pressure. There's no way around it. So, why the f%#k even bother with the taper now? I can't get my head around it.

My girls night with Susan made things much better. We ate yummy beef tenderloin made by one of my UDel colleagues, read tabloids, insulted the anorexic celebs, painted our toenails, put on skin-softening face-masks, ate brownie batter straight from the bowl and talked about sex. It was one of the most fun - and perhaps one of the hottest - nights I've had in ... months. Once again, thanks CSM.

This morning, NPR was doing another segment of its report on kids with cancer (like I need more health-related drama). Anyway, they ended today's segment with this song:

Sitting here in Limbo - Jimmy Cliff

Sitting here in Limbo
Waiting for the tide turn.
Yeah, now, sitting here in Limbo,

So many things I've got to learn.

Meanwhile, they're putting up a resistance,

But I know that my faith will lead me on.
Sitting here in Limbo
Waiting for the dice to roll.

Yeah, now, sitting here in Limbo,
Still got some time to search my soul.

Meanwhile, they're putting up a resistance,

But I know that my faith will lead me on.

I don't know where life will take me,

But I know where I have been.

I don't know what life will show me,

But I know what I have seen.

Tried my hand at love and friendship,

That is past and gone.

And now it's time to move along.


Friday, June 23, 2006

One word to describe this morning's attempt at getting an MRI at Jefferson:


He was scheduled to be picked up by a wheelchair van service at 8 am for a 9:30 am MRI. The guy came in to get Mike and as we were heading out, I asked the nurses if Mike had had breakfast. Nope. So, I stopped in the cafeteria and they made up a boxed breakfast for him to take with him. Then, we got in the van and were waiting as the driver loaded another Magee patient in the back. I noticed Mike was really off - not making sense. Because I'm anal Danna, I called up to the nurse's station to verify that he got his provigil. His nurse was like, "Wait? Where are you? You've already left? He hasn't gotten any of his meds yet!" Fortunately, we were still in the parking area downstairs, so she came down and gave me his gazillion pills to take on the way to Jefferson. I know I've written this before, but Mike takes like 20 something pills in the morning. He HAS to get them. This little incident could have been a freaking nightmare.

Then, we get to 925 Chestnut Street where we're the Magee folks have scheduled Mike to get the scan. But I know something's weird because he's never had a scan done there. Plus, it's an orthopedic place. I call Jefferson radiology as the driver's getting the other guy out of the van. Radiology says that the scan was ordered on "first available" basis, and that they had a spot in the orthopedic building. I explain that my husband needs an MRI of his brain and the woman insists that they have the capacity to do head scans at this particular building (Rothman Institute at Jefferson).

Now, all of a sudden, I realize that the tech who's driving the van isn't coming inside with us. Mind you, I haven't been alone with Michael outside a hospital in 3 months. He's got NO catheter on, No diaper... and they're just dropping us off in this random building. Ok then.

We go up to the 5th floor and search forever for a bathroom for Mike to use that is a handicapped accessible single room so I can go in with him...

Then we get to the MRI place. Tiny hole in the wall. I fill out the forms. Sure enough, we have an appt there. Yes, they do brain scans. Not often, but they can do them. Then, I tell the 2 ladies working there that Mike has a programmable shunt. The response was, "What does that mean?"


It means that the MRI needs to be preceded and followed by X-rays to make sure that s'all good inside his head. It means they need to be equipped with a radiologist on hand to read the X-rays prior to the MRI. It means that we ARE in the wrong place because this building isn't set up for X-rays and has no radiologist on hand.

After 1/2 hour on the phone with people at Magee, they send an ambulance back to pick us up and return us to Magee. Once at Magee, I take matters into my own hands, call Jefferson radiology, get a new appt for Monday at 11:30 am at Jefferson Hospital for Neuroscience (where we probably should have had it scheduled all along). The case managers,

Dr. Rommel, and nurses all apologized profusely. They are going to have some serious conversations about where the ball got dropped.

I was pissed and they knew it.... and to be quite honest, I was freaked out. After all these weeks of coddling and teaching how to walk with Mike and then all of a sudden we're dropped off at this random building where brain injury isn't even the norm. That sucked. To be in a place full of otherwise healthy people with a little broken foot here or twisted knee there, wheeling around my husband who clearly is a bit out of it. It was... weird. It was also nerve-wracking, wondering the entire time if he were going to have an accident because he had no catheter and no depends on.

So, now I'm home, venting into my blog over pizza, getting ready to go to the dentist to get a new mouthguard since the 12 year old housekeepers in our OC hotel threw mine out 2 weeks ago. After today, I might grind my teeth away if I don't have a mouthguard in.


Thursday, June 22, 2006

[Kauai - the most romantic place ever. Mike and I spent 10 days there in 2000, driving in a convertible and camping on the beach.]

Today I felt like I actually spent the afternoon with Mike. Not “sick guy who used to be Mike,” but sort of “Mike Abridged.”
Tomorrow is his MRI at Jefferson. It’s scheduled for 9:30 am, so I’m getting to Magee at 8 am to go with Mike in a special van to Jefferson. I can’t believe the MRI is finally here. That means the appt with Andrews is only one week from today and that surgery might be right around the corner.

Some great Mike moments from today:

What month is it? June
What day of the week is it? Thursday (?$*!)

I brought him the mix CD he made just before our amazingly romantic trip to Kauai in May of 2000. We had only been dating for 2 months when I agreed to spend 10 days camping and hiking with him on this jungle island. Best decision ever. If you’ve never been to Kauai, you must go. Life is short. Get there.

So, before I put the CD in, I asked Mike, “If you were driving in a convertible on Kauai, and you put a CD in the CD player, what song would you want to hear first?”

He replied, “Brand New Day.” Yes - that's the first song on the CD.

Up on the roof deck today, I played a sort of “first thing that comes to your mind” game with Mike all about Baxter. First I made sure he knew that we had a son named Baxter (cause indeed I’ve heard him say we have 2 and even three kids in the past… yikes) So I asked, “How many kids do we have?” and he said, “One, Baxter!”

Then came the fill in the blank with Mike…which was great fun for both of us.

Baxter is: “Our son.”

Baxter is: “A boy.”

Baxter is: “Charming beyond words”

Baxter has: “Two legs.”

Baxter has: “Lots of charm.”

Baxter does: “Whatever the hell he wants!” He said, laughing hard.

Later, when I told Mike the names of various people that care for him at Magee (Kit, Donna, Irene, Anne, Emily) he said, “Oh.. Right.” He said they all sounded familiar. About an hour later, at the end of his OT session with Irene, she said, “Mike, who am I?” and he said, “Donna.” Not bad! Donna is his PT… close.

He also called Kit, “Kit” right before my eyes. And then later, “Pat,” but still –amazingly close.

He’s showing signs that his vision is improving. Subtle things – details that I would never have believed he’d be able to make out. And yet, some things just disappear. It’s pretty unpredictable.

He's also more active. For instance, after he used the bathroom today (still time voiding him successfully, BTW), he located his wheelchair, but started pushing it out of the way. “You don’t want to sit in it?”

“Not now.” He said, still pushing it out of his way.

“You want to walk a bit?”

“Yeah. Let’s walk.” We walked up and down the hall and shocked Donna by showing up at PT on foot. She worked with us on more walking exercises and even on doing stairs with my help. Mike did so great.

Another good sign? He’s giving me lots of, “leave me the heck alone” side glances – for instance, after the 4th time I asked him, “are you SURE you don’t have to pee?” or when I wrongly accused him of chewing his pills instead of swallowing them, he looked at me like, “Dude – don’t you have somewhere else to be?” Kit said, “Geez! Leave him the heck alone!” and he laughed and said, “Yeah, seriously!”

Finally, there’s a really tough and incredible nurse named Myrtle who has worked with Mike since the beginning of his time at Magee. She is so good with him and finds a lot of joy in his improvements. She explained how the first week he was here at Magee, she had to dress him because he really couldn’t do it himself. Now, though, he dresses himself and puts on his shoes, and washes his face – all slowly, of course, but he does it himself. She told me that she time voids Mike every 2 hours and is frustrated that the night nurses last night put a catheter on him from 11 pm until 7 am. She is insisting that throughout the night, when they come in to turn him on the opposite side (which they do anyway) that they at least ask if he needs to use the urinal. She said consistency is the most important thing… and I have to believe that she’s right. If his body thinks that he can just use the catheter at night, why not in the day, too? She has tomorrow off, but is going to call in the morning to verify that they followed instructions to leave the catheter off. You go, Myrtle!

Finally, thanks to the help and instructions of my friend, Heide, I think I actually "cooked" for the first time ever. I cooked Yaki Soba - fried noodels and sauce - that are actually a prepackaged Japanese dish... BUT I actually sauteed Bok Choy, and ... sorry my dear vegetarian friend, Heide... but I added beef. I know I know... your recipe called for tofu, but, I just wasn't feeling the tofu love tonight. I have to say, I felt so sophisticated "sauteeing" an odd vegetable like bok choy. And Baxter LOVED it. His Asian roots must be showing through (Yes, this blue eyed, fair skinned, red-headed baby is 1/4 Chinese. No joke) because he demanded that I let him try my chopsticks. It was a disaster, but he loved it.

June 22, 2006 - morning

Quick notes:

Curtis' hard cover books are all spoken for - but I do have 6 signed books on CD still available. Steiner, Dondon, and Cheryl - shoot me an email at 185cranios@gmail.com with your addresses and I'll ship your books out to you. You can write your check out to me OR - since I'm such a shady character - to the American Brain Tumor Association. If you don't have my address, I'll give it to you in an email. So far I've received $285 that will go to the ABTA!

If anyone is interested in a signed copy of "Man of my Dreams" on CD, email me at 185cranios@gmail.com. 6 left!

Next, my sister-in-law... ahem... "Seeester-in-law" (as Mike says it), Dr. Diana - ordered me a fantastic webcam so that she, Bax, and I can talk online. Would anyone be willing to come over and help me set this up? I'm sure it's simple - but I just can't get myself to do it.

I know there was something else, but I just can't remember. x0


Wednesday, June 21, 2006 - First Day of Summer!

Today was a very positive day - for all three members of our household. Mike had a very alert morning, good therapy sessions, and a nice visit with Susan this evening. Susan called me on speaker phone after dinner so Bax, Mike, she, and I all chatted a bit. Mike sounded great! Susan said he was as good as she's seen him in months. Bax had a busy fun day at school, including time in the sprinkler. After I picked him up, we had a half hour visit to Newton Lake Park which he loved.

Today, I started cleaning up and organizing my UDel office (big sunny office with a giant window), met our fabulous research team, and just felt very hopeful looking towards the future. The RAs are fantastic. Funny, smart, and eager to bring their own energy to the project. The staff is so warm and helpful, and I feel as though I've known the faculty for years. It's the right place for me.

And, I don't feel guilty about not seeing Mike today. I could, but it would be silly. Mike would be so truly excited for me for the day I had. If fact, yesterday, when I told him I wouldn't be in today because I would be spending the day at Delaware, he gave me a huge grin, "Great, smoosher! That will be fun!" So, no guilt.


Tuesday, June 20, 2006

[Mike wearing my sunglasses on the Magee roof deck. I told him to make a "sexy face" so he puckered up and acted like Sammy Davis Jr. - or Johnny Vegas... I couldn't tell the difference.]

Important day – first day catheter-free and depends-free in three months! (Thanks so Kit - the nurse who kicks ass and loves Mike like a son... I've even seen Mike remember her name!) Instead of the catheter etc, the nurses are simply “time voiding” him – an unpleasant way of saying they take him to the restroom every 2 hours. It worked great today! No problems at all. And I think it made him feel good about himself, too.

We had a nice visit from about 1:30 until 4:30 pm. We hung out on the roof deck a bit, then did some PT with Donna from 2:45 until 3:30. At 3:30, I gave Mike a haircut as we listened to a David Sedaris short story on CD.

While listening to the story, I noticed something really encouraging about Mike’s ability to comprehend and recall narrative structures.
The first story is called “Us and Them.” In order to understand the context of the realization I had, I’ve included the text of the beginning of this short story down below. If you don’t want to read these extra paragraphs, the abridged version is: David Sedaris tells the story of a family who lived next door who reportedly never ever watched television. Sedaris found himself fascinated by these weird people. After several paragraphs without reiterating the source of their weirdness (e.g., the fact that they didn’t watch tv), Sedaris writes,

We never spoke, but I'd pass them in the halls from time to time and attempt to view the world through their eyes. What must it be like to be so ignorant and alone?

Here Mike laughed a really good big laugh.

“Why does he think they are ignorant and alone?” I asked, as though I just happened to miss the beginning of the story.

To which Mike responded almost as an aside to me, “They never watch TV.”

I just found it so amazing that he recalled this important detail even though the story had activated a lot of other information in between the presentation of this fact and the moment when I asked the question (see the original story text below). Usually Mike only has one little bucket for information activated in working memory. Anything else gets tossed out. But not this...

Anne, the speech and cognitive pathologist (who doesn’t really do speech with Mike – since his speech is fine, but works on creative ways to help Mike process information and construct new models of memories), told me that Mike was as good as she’s ever seen him this morning. Knew the month and year. Once he was told it was a rehab hospital, he said it was Magee.

She found a similar thing when reading him paragraphs of information – that when info was presented as a logical story with plotlines, Mike could recall the beginning of it for a longer amount of time than if just presented with random facts or details.
My hunch is that from years of scenework in improv, his brain privileges narrative structures. However, it is also the case that narratives are better recalled and comprehended than non-narrative structures – just in general. So it could simply be the power of narrative as much as/ or more than Mike’s talent in constructing improv scenes.

And finally, I am spending all day tomorrow at Univ of Delaware to meet my research team and prepare for fall. This means I won't be at the hospital tomorrow. So please stop in to see Mike between 4 and 8 pm and give him lots of love. The nurses shower him with it, too - but I'd love know he was getting a special extra dose.

Us and Them
From Dress Your Family in Corduroy and Denim

by David Sedaris

…Back in New York State, we had lived in the country, with no sidewalks or streetlights; you could leave the house and still be alone. But here, when you looked out the window, you saw other houses, and people inside those houses. I hoped that in walking around after dark I might witness a murder, but for the most part our neighbors just sat in their living rooms, watching TV. The only place that seemed truly different was owned by a man named Mr. Tomkey, who did not believe in television. This was told to us by our mother's friend, who dropped by one afternoon with a basketful of okra. The woman did not editorialize—rather, she just presented her information, leaving her listener to make of it what she might. Had my mother said, "That's the craziest thing I've ever heard in my life," I assume that the friend would have agreed, and had she said, "Three cheers for Mr. Tomkey," the friend likely would have agreed as well. It was a kind of test, as was the okra.

To say that you did not believe in television was different from saying that you did not care for it. Belief implied that television had a master plan and that you were against it. It also suggested that you thought too much. When my mother reported that Mr. Tomkey did not believe in television, my father said, "Well, good for him. I don't know that I believe in it, either." "That's exactly how I feel," my mother said, and then my parents watched the news, and whatever came on after the news.

Word spread that Mr. Tomkey did not own a television, and you began hearing that while this was all very well and good, it was unfair of him to inflict his beliefs upon others, specifically his innocent wife and children. It was speculated that just as the blind man develops a keener sense of hearing, the family must somehow compensate for their loss. "Maybe they read," my mother's friend said. "Maybe they listen to the radio, but you can bet your boots they're doing something."
I wanted to know what this something was, and so I began peering through the Tomkeys' windows. During the day I'd stand across the street from their house, acting as though I were waiting for someone, and at night, when the view was better and I had less chance of being discovered, I would creep into their yard and hide in the bushes beside their fence.

Because they had no TV, the Tomkeys were forced to talk during dinner. They had no idea how puny their lives were, and so they were not ashamed that a camera would have found them uninteresting. They did not know what attractive was or what dinner was supposed to look like or even what time people were supposed to eat. Sometimes they wouldn't sit down until eight o'clock, long after everyone else had finished doing the dishes. During the meal, Mr. Tomkey would occasionally pound the table and point at his children with a fork, but the moment he finished, everyone would start laughing. I got the idea that he was imitating someone else, and wondered if he spied on us while we were eating.

When fall arrived and school began, I saw the Tomkey children marching up the hill with paper sacks in their hands. The son was one grade lower than me, and the daughter was one grade higher. We never spoke, but I'd pass them in the halls from time to time and attempt to view the world through their eyes. What must it be like to be so ignorant and alone? [here’s where Mike laughed and when I asked why they were ignorant and alone he told me that they had never watched tv] Could a normal person even imagine it? Staring at an Elmer Fudd lunch box, I tried to divorce myself from everything I already knew: Elmer's inability to pronounce the letter r, his constant pursuit of an intelligent and considerably more famous rabbit. I tried to think of him as just a drawing, but it was impossible to separate him from his celebrity…


Monday, June 19, 2006

Mike's having a good day today. I was at the hospital from about 1 until 3:30. I actually got some work done here at home this morning... imagine that. Mike and I hung out and chatted out on the roof deck for a while until his neuropsychology appt with Emily at 1:45. Emily usually works with patients trying to deal with the emotional aspects of their illnesses or disabilities. But, in Mike's case - her main job is really getting Mike to recognize that he has significant deficits so that he can begin to realize he needs to look to alternative strategies.

Unfortunately, he really has no awareness of his problems - unless you say, "Do you recall that you have vision issues?" in which case he'll say yes. But if you simply ask, as Emily did today, "How are you walking, Mike? The same as normal, a little worse that normal, or pretty badly?" He responds with confidence, "Same as normal." Same with vision, "Can you see like you used to be able to see? Is it a little bit bad? or is your vision terrible?" he says, "No, it's fine." Then, when you ask about memory issues, he says he's having no trouble in that area. Emily tried to illustrate through comparison to get Mike to accept - even just for a moment - the fact that his STM doesn't work.

"What did you do yesterday for father's day, Mike?" Emily asked. Mike looked up and down, closed his eyes a second, then casually and naturally turned to me and said, "Oh yeah - what did we do?" just as any member of a couple would turn to the other for him/her to fill in the blank. But I told him that he needed to answer the question for Emily, but he couldn't. Then Emily and I both told him how Bax came in to see him and we all hung out and snuggled for a couple of hours. He said that "sounded nice." When I asked if he thought it was weird that Emily and I had a perfectly fine recollection of yesterday, while he didn't, he shook his head, "nah."

"Why don't you think it's strange that we can remember yesterday while you can't?" His response - I forget the exact wording - implied that he wasn't weirded out by it because he had other people around to tell him about yesterday. phew.


Walked with Mike a bit more in PT this afternoon. He's getting stronger. At one moment, we stopped and looked into the full length mirror on the wall of the gym. He said he couldn't see himself, but when I raised my own hand in the mirror and had him do the same, it was as though he could find us in the clutter of the reflection. On a whim I asked if he could tell what time it was on the giant wall clock above the mirror. Without missing a beat: 3:15.

Correct! That blew my mind.

The key to figuring out how to make this complicated situation work: sleep. Last night, got 7 hours (which is really good compared to recent weeks), Bax woke up at 5:30 am (boooo....) and he and I ate and went for a great 1/2 hour walk along cooper river... all before going to daycare at 8:30.

And BTW - no wonder the boy cried for 7 days straight and acted like he hated the world." I have giant canker sores all over my tongue (my version of what Bax had) and I can't stop biting it and can't eat anything normal. My dinner (thanks to my neighbor Michelle) - 4 fudgesicles and a bowl of vanilla yogurt. I'm surprised that Bax didn't just learn the F-word out of sheet anguish last week. That's how badly these sores hurt.

Ok, time FO' bed!


Sunday, June 18, 2006

Had a nice afternoon visit with Baxter and Mike today at Magee. Mike was sitting in bed, so Bax spent a lot of time just snuggling with him in his cozy tented bed. It was a pretty good visit. Mike seemed pooped, though.

I think with Mike’s condition being at least relatively stable day to day right now, I may not blog every night. I feel like I’m starting to get antsy about moving ahead with certain responsibilities – like my job. I’ll be teaching in Sept and the dissertation needs to move ahead – at least while I know we have a “plan” for at least the next month or so. Yes, it is very difficult to even start wrapping my head around anything non-tumor related, but I think I need to try. If it’s still not time, I’ll know. You may hear from me every night anyway.

I was also motivated by the fact that Mike’s mom will be here for a week at the end of July, and Jonathan and Anna have offered to come live here and take care of Bax over a period of a week while I stay with friends and immerse myself in my dissertation long enough to either finish or get enough momentum going to get done relatively soon.

Saturday, June 17, 2006

[On the roofdeck on Sat afternoon with the Baxman and dada]

Had a brief visit with Mike and Bax this afternoon. Went up to the roofdeck and had a really nice time. Dr. Rommel decided to up Mike's decadron again to the 8mg 2X/day dosage. Everyone had noticed a marked downslide once they started the taper a few days back. So, they've agreed to keep it at 8 mg 2X/day at least until June 26 (i think that's the date) when they'll try the taper again.

Also, for the first time since Mike got in the hospital, a doctor asked me about administering Mike's testosterone gel. Since Mike's pituitary doesn't work at all, he manufactures zero testosterone on his own. It's easy enough to replace (a gel that he rubs on his chest after he showers) but the docs haven't labeled it a priority given Mike's other problems, so it's never been part of his treatment. There was also the question mark about what happens if we get pregnant while Mike's got radiation in his system - so we all put it on hold to discuss the testosterone. Well, the case manager talked with the docs at Magee about it and Dr. Rommel asked me to bring in the medicine so they can administer it for him daily. Maybe they have pity on the poor wife and think, "well, if he's going to have this surgery and get well, he's going to owe her for a long time." They're good people, I tell you.

Had a great time grilling out back with friends and watching Soen and Baxter run naked in the sprinkler last night. My poor son got eaten alive while I wasn't looking, though - on his privates, poor lil' dude. My favorite part of the day was when Susan asked, "Is he going to just poop on the ground?" I shrugged, shook my head and was like, "No! no... " I had no idea, I was just full of it. Well, all of a sudden I hear my happy guy inside his playhouse crying, "Mama! Mama!" looking mortified. No diaper + outside + need to go #2 = #2 on the ground and covering naked baby. Thank gosh the hose was right there.

I had a funny "That's mike, alright" moment today. I need to go to a dentist because I grind my teeth horribly and while in OC, the housekeepers tossed my mouthguard in the trash. I know Mike saw a female dentist after we moved to NJ but didn't know her name. I looked in the phone book and all around and couldn't find any notes that would help me figure out who she was. Then I got on Mike's computer, in Entourage's address book and did a search for Dentist. And ta-da. There it is: Nancy Flint, Haddon Ave. I love my organized smoosher. He also was using Entourage's office reminders to remind him to take his meds. Figured that out while poking around, too.


Friday, June 16, 2006 - Bax turns a year and a half old!

[photos: the baxman ready for school this morning, munching on a bagel and full of the dickens.]

Saw Mike this afternoon from about 1-3. He was sleepy and a little unfocused, but definitely getting physically stronger in therapy. He is able to walk better than last week. The therapist even had me walk with Mike a bit to get a feel for it. Mike carried his weight pretty much by himself. They swear he was alert and good this morning, but this afternoon he was sort of spacey. While walking down the hall, for instance, we'd come to an intersection and I would say, "Now turn to the right." He would say, "Ok." and then continue walking straight. He would even be able to repeat the instruction just given to him, but he definitely wasn't processing it enough to actually follow the instruction. It was frustating to watch and interact with.

The same kind of thing happens with him trying to get out of his wheelchair a lot. He undoes the velcro belt around him (there's another permanent one that he can't undo, but the velcro one is supposed to simply remind him not to get up unassisted). When you ask what he's doing, he says, "getting up." When you ask what he's supposed to think of when he encounters the velcro belt on his lap, he can't remember. So you tell him he's not supposed to get up out of the chair unassisted. He'll look you in the eye, say, "Ok," and then try again as he's nodding at your instruction. To get through it, I just distract with some other activity (How about a sip of soda, Mike?).


Baxman is back. Thank gosh. Went to daycare today and had a great day. When I arrived to pick him up, he was making out with his first favor-ice popsicle. Mmmm. true love.

I haven't gotten the gross evil hand,foot, mouth disease thus far. The canker sores on my tongue may simply be a result (as my sister was kind enough to point out) of my eating too much candy. I actually haven't been eating too much candy lately - other than the container of sno-caps the other day. Oh yeah - and there was my trip to the new Wegman's grocery store in Cherry Hill this morning where I splurged. I treated myself to something I only allow myself to get like 4 times a year. Ok, before I describe this particular vice, I confess. I am ghetto. I put ice cubes in my white wine if it's not cold enough, and I read Star magazine before bed. There - I've said it. Now, the sweet treat that I allow myself every once in a while? Ok, You know those crunchy sugary designs that you can buy in the cake decorating section - they often spell out like, "Happy Birthday" and they come on a cardboard and paper backing. You peel them off and put them on the cake? Ok. I eat them. I bought a whole sheet at Wegmans and by the time I got home (6 minutes later) they were gone. So maybe that's why I have canker sores.

Thank gosh Mike isn't home to see this. He would vomit out of sheer disgust.


Thursday, June 15, 2006

[photo taken just before Liz's baby shower in Spring 05]

Home with the baxman today. Happy to say he seems to be doing much better. No fever today. Only super-cranky during meals because I think the sores in his mouth still hurt. It was actually a far more enjoyable day than I had anticipated. We played outside, went for a walk and discovered a lush and hidden park off of Cooper River. His diet consists of jello, Rita's water ice, pudding, yogurt, gatorade, and cheese. Though tonight he actually ate a little chicken, green beans, and a piece of bagel.

This evening I figured out how to charge the freaking video camera and Bax and I watched the footage Mike and I have taken over the past year. Only about 40 minutes total ( I know - we always forget to take the camera out), but some great clips of Mike smooshing Baxter. Bax was captivated and kept saying, "Da-da" watching the movie.

I'm sad to say I have acquired big bad canker-sores in my mouth - which is probably indicative of my having gotten the baxter virus. I had this virus (coxsackie - or "hand foot and Mouth" - yes. vile and repulsive, I know) really severely last summer - had to stay in the ER one night with a morphine drip (insane), so I'm hoping it's not going to hit me hard. But keep a lookout for a plea on this blog for h.e.l.p. with Baxter over the weekend. Several of you have offered and I may take you up on those offers.

Mike's doing well today. The same really - but no worse. His nurse talked to Dr. Rommel about upping his dose of Provigil (sp?) a drug that's used to help narcoleptics stay awake. It's also used to treat ADHD and help people focus attention through some stimulant or something. They think this might help Mike - especially in the afternoon when he gets sleepy.

I asked Mike if he remembered our special lunch yesterday and he said yes. When I asked for details he said, "I just remember you brought the boy [bax] in, that's all." oh well. I told him about the lunch from Le Bec Fin and Jim and Mary acting as our servers - the whole thing in detail - and he replied, "Aw...That sounds really nice." When I asked, "Do you think it's weird that you don't remember it at all?" He replied, "Not really."

I called the nurse tonight to arrange a phone call with Mike. She dialed his phone and He and I talked for about 10 minutes. He got to talk to Bax on speaker phone and feel the chaos of home as I reprimanded Bax for playing in Maggie's water dish. It was nice chatting with him. He's never been a fantastic "phone-person" (no offense, Mike, but you're less emotive on the phone than face-to-face. fact, sir. ) so it's not really that different talking to him on the phone right now - other than a clear lack of STM.

Still catching up on sleep. x0 danna


Wednesday, June 14, 2006 - 3 year wedding anniversary

Today was a very nice anniversary. Quite sad, but very sweet. Mike was still a little off today (like yesterday), but pretty responsive when you got him up and alert. The nurses had set up the conference room with a table, tablecloth, and centerpiece (a beautiful arrangement my sister sent with flowers in our wedding colors). Jim and Mary picked up our lunch at Le Bec Fin and came to “serve” us complete with French accents and aprons! They lit candles, brought Mike’s (Kathy Chevoor’s) boombox into the room, put on romantic music, and served us lunch.

For the most part, Mike understood that we were celebrating our anniversary. Throughout the day when I asked what we were celebrating, several times he couldn’t find the word “anniversary” and he just said, “our love.” He had signed a couple of cards that CSM bought. He signed them both "I love you, Michael Young." When I told him they were cards from him that CSM had him sign he said amusingly, "Aw... that was thoughtful of me."

We ate split pea lime soup, escargot, duck, pork, and other yummy sides with sauces. Mike seemed to really enjoy the food and the rich tastes. After lunch, I brought him up to the roof deck and we enjoyed the sun and warm breeze.

Following lunch and the roofdeck trip, Mike had an OT session. They are trying to work on compensatory strategies with him, but with the lack of STM (short term memory) it’s quite a challenge. The best bet is just repetition with basic instructions (move your head all around, Mike. Use your hands, Mike.) One thing that’s a challenge is that he is not aware of his visual deficits like any other person would be in the same situation. As a result, he doesn’t appear to use his hands or move his head and neck around to get the full picture. Instead, it’s as though he believes that whatever he can’t see in his left and lower fields simply doesn’t exist. For example, when instructed to turn left down a hallway while walking with the OT, Mike turns like 10 degrees to the left. In his field, that’s a big shift, but in reality, it’s nothing. Since he can’t see what is directly to his left, it’s not there. Same thing occurs with dining. He doesn’t ever really get to the left side of his plate of food. If you want him to really eat something, it needs to be on the right side of his plate. I did watch him intentionally reach for the bottle of seltzer to refill his empty glass at lunch, though. The seltzer was directly in his good righthand window.

It has become clear that the window of vision on his upper right field is a narrow but good one. Nicole, the OT, work with Mike on walking, and then brought him into their “kitchen” to have him identify appliances and navigate around. He did surprisingly well, correctly identifying all major appliances, and even able to open the cabinets and locate and take out a glass and coffee mug (per the OT’s instruction) and place them on the counter.

Ok. I’m exhausted. My apologies if I haven’t replied to your call, email, letter, or thanked you for a gift. The past 72 hours have been tough with Bax’s condition. I need him to get better. Or I need 2 of me.

I had planned on sending out curtis’ books to interested folks this week, but haven’t gotten my act together since Bax got sick. I’ll try to get to it by early next week. Also, I have about 7 version of the novel on CD – also signed by Curtis. I believe all the hard-cover books are spoken for, but the audiobooks are still available. Email me at 185cranios@gmail.com if you’re interested.

PS: I'm staying home with Bax Thursday 6/15 - not going to the hospital. Bax is getting over this bug and needs to stay home. If you have a free minute, you could stop in for a visit to Mike this evening - after his dinner (5:30 pm is when dinner's done)

PPS: Is it a symptom of the current weird situation I'm in (missing my husband, missing a father-figure in the house for Bax) or are there other moms out there who have a huge crush on "Steve" from Blue's Clues? I can't tell who gets more excited when the show comes on -- Bax or me. oy.


Tuesday, June 13, 2006

[Stephen Colbert: a random reminder of the old Mike]

Today was rough. Mike’s a little lethargic, slow to process information, and not recalling information well. Happy though, and not totally out of it like last week.
I chatted with the nurses about it and they agreed that Mike wasn’t looking great today. They, too, noticed that he was having difficulty even paying attention to information at the moment it was communicated. He couldn’t even follow simple instructions (e.g., reach more to the left to locate your water bottle). I immediately recognized the change and wondered if they had started the tapering of his decadron. Yup. This morning, instead of 8 mg, he only got 6. The nurses said I could page Dr, Rommel if I were concerned. I did and he was there within 5 minutes. He said that the taper is necessary because it’s not good for the immune system, the adrenal glands in particular, to be on these steroids for too long. However, if the therapists working with him see that he is really on a downslide over the next day or so, Dr. Rommel will place a call to Dr. Andrews asking about the possibility of upping the dose again.

I got a call from Bax’s daycare at 3 pm. The little bugger had a 101.5 fever and they suggested I take him to the doc. Well, fortunately, they got him in at 6:15 pm. And nope, it’s not just teething. But it’s also not an ear infection. The verdict? It’s a version of the coxsackie virus. Complete with sores in the mouth, on the back of the throat, a rash, diarrhea, fever, aches, and general anger at the world. Well, that will explain what happened to my boy over the last 5 days. And thank gosh it’s not teething – cause that would mean this hell would last another month at least. Instead this acute hell will probably be over in the next 2 days.

I got the call about Bax’s fever while chatting with the social workers. They were wonderful. I’m glad I was there at that moment because it was just too much. I can’t handle everything. I just can’t. Lately I’m parent my sesame street and motrin more than anything. I hate it, but that’s all I’ve got. I crashed when I learned he had a fever. I operate on adrenaline 80% of the time. I’m still sort of in trauma mode, because as far as I’m concerned, we really have no freaking idea where we’ll be 1, 4, 52 weeks from now.

Couple random thoughts from the last couple of days:

Mike appears to have a nice window of vision up high and above right. Think 2 o’clockish. It’s from his left eye, which does have a functioning sight line across his body towards the right. The right eye doesn’t appear to have much vision at all.

I took him up on the roof deck today. It was beautiful! They have tons of flowers and plants, and a greenhouse full of orchids. He sat, eyes closed, in the sunshine. I moved the wheelchair so that Liberty one and two (skyscrapers) would appear in that one working window of sight. I asked what he saw and he said, “Ritz two.” I said, do you mean “liberty two?” and he said yes.


Today after Bax’s Dr’s appt, I took him to the drug store to fill a Rx and buy pedialyte. The cashier is a sweet young woman who we see a lot at Walgreens. Mike, Bax and I used to walk there together regularly in the fall and winter. She chatted with Bax and remarked at how talkative he is these days. It was a nice moment because Bax was distracted and happy and I was reveling in the smarty pants that is Mr. Baxter. And then we said “bye-bye” and she said to Bax, “Are you going home to see Da-da?” And he just looked at her. Then she asked again. I didn’t know what to say. No reason to correct her. No reason to explain anything.

Bax just looked at her, stunned and then looked at me and asked quietly, “Da-da?”

I felt like I had been punched in the gut.

I had another moment today – watching the Colbert Report. Tomtom and Meh pointed out a few months ago that when Stephen Colbert runs across the stage to interview the guest, he has this Mike-ish bounce in his jog with his hands in the air. It’s true. It’s totally ComedySportz Mike Egg-goo Young running onto the stage for the second half. If he can ever do that again… I’ll…. I don’t know. Do something really really good for the world?

Ok, tomorrow is our romantic Le Bec Fin lunch. I hope he enjoys it.

Finally, a question: Would anyone be willing to do research on affordable and reliable dehumidifiers? I need one for our smelly basement. Preferably one with an automatic shut-off when the reservoir is full.


Monday, June 12, 2006

Mike’s schedule Monday through Friday
  • 8:45-9:45 Group Cognitive Therapy
  • 9:15-10:15 Occupational Therapy
  • 10:45-11:15 Physical Therapy
  • Noon-1:00 pm LUNCH
  • 1:15-1:45 Speech Therapy
  • 1:45 Neuropsychology (Mon and Thursday only)
  • 2:45-3:15 Physical Therapy
  • 4:45-5:30 pm LUNCH
On Weekends, I’ve requested that his PT and OT sessions be completed in the morning. That way he’s free to see visitors in the afternoon. Also, If you’re there and he hasn’t had lunch or dinner yet, I have gotten word that we (friends/family) are allowed to wheel him down to the cafeteria on the 2nd floor to eat.

Ok - I just spent an hour writing a post only to have my computer crash. The deal? Mike was great today. Happy, alert, engaged. I even got to talk to him on the phone this morning and he was fantastic! No, no STM (was confident he hadn't yet had any therapy), but quite appropriate in conversation. While I was at the hospital this afternoon he was better than I've seen him thus far. Knew it was June and knew he was at Magee. Not everytime he was asked, but most of the time. I told him again about the Le Bec Fin lunch on Wednesday and he was very excited. The staff is being fantastic about it and I think they're trying to get us a special room or something to dine in.

Exhausted. Bax was up from 2-4 am. Miserable today once again with his freaking molars. Dinner was some turkey, a popsicle, a pudding, and 3 pieces of pasta. Welcome to toddlerhood folks.


Sunday, June 11, 2006

[Photos: Bathtime!, All our boys on the OC boardwalk, Scott entertaining the crew]

Very nice weekend at the beach with the family - all of our kids played together, Bax loved the merry-go-round and hanging with his roomie Jack L., and I got some great time with our friends
. It felt wonderful being with the crew. I had one moment last night where I just got very sad that Mike wasn't there. It was the kind of time that Mike absolutely loves. But other than that, I let myself enjoy the familiar feeling of being surrounded by the people we love. (Baxter spent much of the weekend crying due to freaking 2 year molars, but more on that in a second).

I was talking with Julie on the way home about what an incredible group of friends this is. I've only known them for 6 years, and yet we have seen each couple get married (6 weddings and 1 on the way), and the births of Soen, Adler, Baxter, Peter, Jack, Sylvia, and 4 yet-to-be named members of the clan. We've seen each other through times of grief and celebration. And the best part is, they are amazing people. As Julie put it, "superheroes."

Unfortunately, Bax had a rough go in spite of all the fun. Molars are coming in. Bax has a terrible time with teeth. for about a month with each set of new teeth he turns into "baby nut job" (used affectionately, of course). Happy, sad, hyper, sleepy, angry, laughing, all the while chewing so hard that he chewed his tongue all up and then it hurt to eat any foods. From 12:30 last night until the break of day, my adorable son and I "rested" together on the sofa as he cried the whole way through. Poor Jules and Jack were up all through it.

So, this morning, wise Julie said, "I'm thinking we head right now, get home, get good naps in, and call it a day." done. We were back at home by 10 am and thank g.o.d. Baxter got a good afternoon nap. However, he did continue to cry all afternoon (yes, all afternoon - through coloring and stickers and playing ball and running around outside) until finally I discovered the toddler binky my dad had bought for Bax three months ago when he feared the little guy might need some security with all the craziness in his life. Well, I never gave the binky to Baxter (he hasn't used one since 3 months old) but tonight, got it out of the package and watched as a relieved baxter chewed his way to sleep.... thank you dad.

Mike had a great weekend. Lots of visitors to keep him company, nice time outside on the roofdeck with Tom, Meh, and Diane. During one window of time on Saturday, the nurse said that there were no visitors there and Mike didn't have any therapy scheduled, so the nurse asked if he wanted to go back into his room alone, or stay in the wheelchair out with her near the nurses' station. He said sweetly, "I'll stay with you" and chatted with folks who came down the hall (not really initiating still, but chatting when chatted to).

Got a call from the case manager, Cynthia. She said the team met about Mike's case on Friday - all his therapists, docs and the case manager. After their assessments made Wed, Thurs, and Fri, they are on track to continue Mike's rehab, return him to Jefferson for the surgery when the time comes, then bring Mike back to Magee for a second round of surgery post-op. Very good news. This is exactly what I was hoping for. In this first round of rehab, I think he's going to make great progress physically - getting strong and moving about on his own. Then, the second round I figure they can concentrate more on his cognitive functioning.

Ok, I'm so tired I can't see. Enjoy the photos.
love, danna


Friday, June 9, 2006

Went in early this morning to Magee with the Baxman. It was a great visit! It’s so much more comfortable there than at a hospital. They also let Baxter and me accompany Mike to the “gym” where he has his PT and OT sessions. Bax and I played on the mats with the balls and balloons and checked in with dada once in a while. And of course, Bax is a big hit with all the nurses and therapists.

Mike seemed to be really positive today. Clearly enjoyed having Baxter there. Liked hearing everyone ooh and ahh over him. Liked when Bax would come up to him and hand him things (“ball!” “elmo!” “block!”). After OT in the gym, we all went back to Mike’s room and I set up Bax in a chair in front of Mike’s tiny TV (which Mike can’t really see at all) and put on Sesame street. Bax was comfy like at home – sippin’ on juice, hugging his elmo puppet… and I actually got a good 20 minutes to give Mike a shave and hang with him a bit without freaking out about Baxter going somewhere he’s not supposed to.

It’s a comfortable place and I’m happy Mike’s there. Also, when leaving the guest visitor’s parking lot, all I do to get home is follow Race Steet up and over the Ben Fr. Bridge. It was literally a 14 minute ride home today.

Ok – I’ll be at the shore tonight through Sunday. Again, please stop in to visit Mike this weekend – especially Sunday. I think you’ll all be impressed with the place and happy to see Mike looking less like a patient and more like a person.

Love, Danna


Thursday, June 8, 2006

[idea for our anniversary on June 14th]

Good stuff at Magee! I got to there after lunchtime today and Mike looked pooped. Up in a wheelchair, in his own clothes (yay!), but clearly tired from his morning therapy sessions. He had physical therapy in the morning, along with occupational therapy and speech. Then he had lunch, followed by a little break and then a meeting with the neuropsychologist and another round of PT in the afternoon. He seems to like it there from what I can tell.

Couple funny things today:
I have decided to alter my interactions with Mike based on how the therapists are working with him. The biggest change is in not doing things for Michael, but giving him encouragement to help him do them himself. I offered him his water bottle today, held it up and slightly to his left (his best sight line from what I can tell) and encouraged him to reach for it. I explained that I’m going to be doing less for him and trying to use opportunities to get him moving or to explore his environment more. He agreed that was a good idea. Then I told him that if he was ever particularly tired or at all in pain, he should just tell me and I’ll help him get what he wants/needs. Like, if he’s really thirsty and exhausted he should just say, “Danna, please just hand me my water.” To which he replied with a smirk, “Or just… Danna, give me the f*cking water bottle.”

I told him that Al-Zarqawi is dead and he really seemed to register that information,, looking up at me directly in the eye in response, “Really? Wow. Nice.”

I then switched his tv to CNN and said, “Oh good, it’s that woman you like” to which he replied immediately, “Right. christiane amanpour.”

Mike still is clearly unaware of the majority of his deficits. He doesn’t know he has trouble remembering things, doesn’t know that basic tasks are a challenge (like getting dressed etc), still thinks that he uses the bathroom like everybody else. Our main challenge with Emily, the neuropsychologist, is going to be working with Michael to get him to be aware of his own impairments to help him make accommodations.

I had a brainstorm today. Mike and my 3 year wedding anniversary is next Wed June 14th. I thought it would be so great to bring Mike a romantic dinner for two from Le Bec Fin to the dining room in the brain injury unit. I called the restaurant to ask about having them prepare food that I could pick up and bring to Mike at Magee - to which the very French hostess on the phone replied, “We do not do ‘take-out.’” But, like a good wife, I played the S.F.T. card – never actually even mentioned the S.F.T., but simply explained that Mike has been hospitalized for 12 weeks and is now at Magee and it’s our 3 year wedding anniversary. She put me on hold to talk with the manager and… it’s a “go!” I think Mike will really enjoy this!

I have to say it again: I’m so glad we’re at Magee now. I think Mike will make good progress there.

Please please stop in to see Mike this weekend!
Go see his new digs! It’s sunny and clean and new and not scary like a hospital. His roommate, Ron, is an awesome guy, too. Super-friendly with a positive outlook that rivals Mike’s. He was in a car accident a couple of months ago. He lost his leg and had other serious injuries. He was unconscious for weeks. He’s only been at Magee 2 weeks and is doing amazingly well. He keeps telling me that Mike’s going to do awesome there, too.

Anyway – stop in and see Mike if you have a free moment. Particularly Sunday. Remember, I’m away from Friday afternoon through Sunday night – and I really want to be certain he’s not alone this weekend. Visitors are allowed from 2-8 pm on Sat and from 11 am until 8 pm on Sunday.


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

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.


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.