Sunday, July 9, 2006 - evening

[Baxter today at the Christmas Tree Shop. Jae, Kylee and I were looking at baskets on the shelf, and when we turned back around, he had put this basket atop his head. For those of you who know of Baxter's Asian heritage, perhaps you find this vision as amusing as we did.]

Mike’s not looking great. I ran into Dr. Evans in the lobby on my way upstairs. I said hello and he seemed pretty lowkey with me. “I know,” He said, “He looks pretty punk today, huh?”


“Shit. He does?” I said. Evans instantly realized that he spilled the beans because I hadn’t been up to see him yet.

Dr. Evans proceeded to tell me that the swelling in Mike’s head is substantial. The ventricles are a bit smushed (not to be confused with smooshed). Mike doesn’t have a large collection of fluid underneath the skull on the left like last time (in April) – just an average sized fluid collection - but his brain has a lot of swelling. His left eye is completely swollen shut and the right one is partially swollen shut. He’s not very responsive.

I’m actually glad I saw Dr. Evans on my way upstairs. It prepared me for the fact that he’s not looking great.

Evans thinks we need to monitor him closely and just give him time. He doesn’t want to remove the bone flap like last time. Especially because Mike has the v.p. shunt already, which is a nice safeguard against hydrocephalus. He really feels like what Mike needs is to let the dust settle. His brain is not particularly “compliant,” meaning, there’s not an awful lot of give, so “a little swelling in Mike’s brain goes a long way.” Perhaps if we give it some time, and start looking seriously at Mike’s condition towards the week’s end, we’ll probably have a better understanding of where we’re heading.

Also, Mike’s sodium is low (in the 120s) so they are giving him 3% saline fluids. His hemoglobin is low (6.5) so they’re giving him packed red blood cells and platelets. His phosphate is low, so they’re giving him IV phosphate.

Evans also gave Mike an additional med for swelling: Mannitol (25 mg). It’s a diuretic which causes you to pee an awful lot. That will help the fluid retention in the brain as well as bring Mike’s sodium down.

Mike also had a slight fever today – between 100 and 101. If it goes over 101.5, they’ll probably take blood to grow culture to check for infection.

So, Friday night may have been a vision of things to come, but we have a lot of work before we get there. Also, I’ve been thinking a lot about the fact that even if/when Mike gets better neurologically, we have a difficult road ahead. Managing his meds, checking on the regrowth of the tumor and cysts and monitoring Mike’s cognitive and physical status day-to-day for signs of problems is going to be a full time job. Just a thought.

For those interested, here are Mike’s current medications:

Levothyroxine (thyroid)
Hydrocortisone (steroid to supplement cortisol)
Folic Acid
Ferrous Sulfate
Potassium Chloride
Dexamethasone (Decadron)
DDAVP (For diabetes insipidus)
Sodium Chloride
Mannitol (New: for swelling in the brain)
Vitamin K
Sodium Phosphate
Ciprofloxacin (for the UTI)


Michaela said...

Hi. Scott and I went to see Mike this evening. And while he was very sleepy and quiet he did ask me "how are your boys??" and laughed at Scott's jokes. (or attempts at them) We only stayed for 10 mins. or so, as it looked like the man needed some rest.

Peter said...

Yesterday (Sat.), nurse Jen told me that all were pleased with Mike's MRI. Has that changed, I wonder.

I think initiating with a question like "how are your boys?" seems a very good sign, no?

csm said...

sorry i didn't get a chance to see mike this weekend... i am hoping after the BIG BAG dust settles that i will get over to visit. and i am still very hopeful about things... esp. after how great he was on friday nite. off to bed... making a big bag is exhausting.

love, csm

The Brain said...

Peter - I think that just from looking at Mike from the outside, they can see that the swelling this morning was substantial. He also was completely unresponsive, so after having been "stepped down" to telemetry last night, he was brought back to the INICU this morning for more frequent monitoring. I don't believe there was an additional scan, I think it was simply based on his mental status and his visible swelling.

Deke Young said...

Victoria and I made the 5 hour drive to visit Mike at the hospital yesterday (Sunday.) While Connecticut may not seem close to Philadelphia, compared to Atlanta it is drivable in a day (unlike the previous trips in November, March Part 1 and March Part 2.) For me it was worth it to see Mike’s condition for myself. Conveniently we arrived while Danna was still there to hear the update.

On the outside Mike has less facial discoloration than the last craniotomy (right.) I was impressed that the stitches are traced along his hairline, which should be less visible with a full head of hair; typically Mike likes a full head of hair. Both eyes are swollen, giving me the impression it was an effort to open his eyes. Mike reacted more with smiles in recognition to Victoria and my voices. When I kneeled close and addressed him in a loud direct voice he acknowledges me, but he also reacted to Victoria comments from across the room. To me, Mike is hearing a lot, but not reacting much. Maybe it is so much effort to open those swollen eyes or speak through those chapped lips.

Having been though a few major surgeries myself I know how annoying the hospital staff is when they bother you every few minutes to check you BP, temp, alertness or general attitude. The difference is my operations were all orthopedic, so sleeping soundly was encouraged. In Mike’s case the nursing staff is checking his alertness every 5-10 minutes. That would be exhausting for me, and I was hospitalized for 3 months fewer than Mike has been this time. Still he does respond when I press him for feedback, and right now I cannot fault him for not wanting to initiate conversation with his brother (maybe I am just another voice keeping him from restful sleep.) Because I am an engineer, not a medical professional, I try to stay out of the way when the staff is giving Mike valuable attention even though I want the time to spend on my brother.

There were a few times when I was talking to him while Victoria was rubbing his feet. Mike was able to smile at my pointless Cleveland Indians facts and Victoria’s lighthearted comments. Mike was tilting his head from the side when reacting to me and then upright when responding to Victoria. To me that shows that Mike is listening to the whole room conversation, although he is not initiating commentary often.

I encouraged Mike to keep fighting, reminding him that Diana, Richard, Chris, Lonia, Victoria and I were trying to visit him in intervals. One can only hope that Mike recognizes that we are doing the best we can considering the distances involved. As much as I would like to quit my job and meddle with Mike’s physical therapy routines at Magee, it is not a practical reality. Finances are finances, and my background in recovering from broken bones and reconstructed ligaments decades ago is probably not in Mike’s best interests. Hard facts dictate that I leave that job up to the trained professionals.

For now I am just trying to provide some continuity on mundane topics like Indians baseball and Browns football. Victoria and I sent him an Andra Davis jersey a month or so ago. Since it has a front and back it does not qualify as hospital-appropriate attire, but we just wanted to send something that would provide some continuity to Mike’s past. Vision problems aside there is a recognizable “feel” to a football jersey. When you grow up in Cleveland, following the Browns is like looking for the morning sun in the east horizon. We do not question why, because it has always been there. Hoping to key on those long term memories that are still there, I talk about sports, horrific childhood vacations, etc. I would love to get my hands on some of those red rubber bands the paperboys from the Cleveland Plain Dealer shot at each other. Since I cannot, Victoria falls back to more practical things like fleece blankets, books on CD, flowers for Danna’s graduation because Mike could not help her celebrate, and football jerseys and all the other small ways we keep trying to support Mike, Danna, and Baxter from afar during this painfully long recovery.

I was lucky enough to talk to Mike during that great lucid window Friday night. Nice to hear him back, if just for a few minutes. Looking at him today was great, I am not discouraged by the swollen face and jagged scar. Mike and I have both healed quickly. That tells me that we both share some favorable genetic traits. I look forward to hearing about his rehab at Magee once these latest post-operative waves cancel out and Mike (hopefully) has some smooth water ahead.