Wednesday, September 30, 2009

IPhone, Facebook, Netflix, and Wii

Feeling good and trying to occupy myself with fun things around the house. Loaded some word games onto the awesome iPhone. I can now stand on both feet now that I have the "boot" , so now I can bowl and play tennis on the Wii. Watched a couple of really good films on Netflix: Bottle Shock and Fever Pitch (the original from 1997 with Colin Firth NOT the one with Jimmy Fallon). I get out walking a little bit each day on this new boot but Cheverly is not flat!
Even cleaned out a closet and took out the trash, wheee!

Tuesday, September 29, 2009

Adios crutches

The orthopedic surgeon took off Jim's splint today, and removed the 10 staples holding together the incision from the achilles repair two weeks ago. (For those keeping count, that's nearly 40 staples that had been holding Jim together this past week!) The doctor was extremely pleased with Jim's recovery so far, and impressed by his range of motion. He gave Jim a removable walking boot (looks like a ski boot) with a 4" high wedge insert to help support the repair as it continues to heal. It's a bit awkward to walk with one heel so much higher than the other, but Jim's thrilled to be free of the crutches, and the girls think the boot looks "cool." We'll follow up in another 3 weeks, at which time they plan to remove the wedge, and begin physical therapy.

Jim is feeling great a week after the brain surgery. He is eager to return to presurgery activity levels. It's probably a blessing for his brain recovery that his achilles has forced him to rest a bit this week.

I think he may indeed have super healing powers.

Monday, September 28, 2009

One week since brain surgery

Just an update. I am home, feeling energetic (getting a little antsy.) Tomorrow I go to the Ortho to get a walking cast for my achilles tendon recovery. I am looking forward to having more mobility.

Thursday, September 24, 2009

Good to be home.

Came home yesterday!
Feeling really good today. I am wearing a bandanna to cover the missing hair on the left side and the 29 clips holding the scalp incision together. I am finding that reading and speaking was a little difficult as I sometimes miss a word or two. Every so often I close my eyes and let my brain reboot a little bit. Each day I am getting better.
The girls are very happy to see me. Marcie is thrilled to have me home. (It would be great if her friends took her out for a wine to celebrate ;-) )

Wednesday, September 23, 2009

Home sweet home

Less than 48 hours after surgery, Jim is home from the hospital! Everyone (medical professionals included) is overjoyed by his progress.

He looks terrific. If it wasn't for the impressive 8" crescent shaped incision on the side of his head, you'd never know he just had brain surgery.

His language is remarkable. Occasionally he has trouble retrieving the word he wants to use, or understanding everything he's reading or hearing. But he's holding conversations, reading books, and communicating well. We're confident he'll be back to 100% very soon.

For now, he'll rest at home as he recoops from both the achilles and brain surgeries. We welcome you to continue sending messages of love and support electronically or by mail. We'll let you know when he's ready for visitors.

The road ahead

The surgery went very well and the neurosurgeon was able to remove a large portion of the tumor. Unfortunately, to keep Jim's language intact, the surgeon had to leave some of the tumor behind. We anticipated this probably would be the case.

So, now what?

In a couple weeks the final pathology report will be available, so we will know exactly what type of tumor this is and how fast it's growing. Together with the neurologist and neuro-surgeon, a neuro-oncologist (a new member of our team) will help us determine the best course of action for dealing with the remaining tumor.

We won't know more until after those meetings. We will post here when we have information to share. For now, please keep praying. We are not quite finished with all this yet.

Tuesday, September 22, 2009

From good to better

Jim's doing even better today than yesterday. His neurosurgeon was so impressed by Jim's progress than he is sending Jim to a regular room today. The nurse just came in to say they have a bed and we'll be heading out soon. We won't be sorry to say goodbye to the ICU. If all continues on this course, Jim could come home tomorrow.

He continues to recover. He is eating solid food and having conversations. Right now, he's sitting in a chair playing with his new iPhone. I just showed him all the messages on facebook and the blog, which has raised his spirits higher than ever. Thank you all.

Monday, September 21, 2009

Steady going

Jim's in the ICU. I'm here with him. He looks great. He seems to be speaking and understanding well. He's sleepy, and dozes on and off. They are keeping a close eye, so he has several lines and monitors, and IVs. All this is normal post op care. At this point, all seems well. He'll be in the ICU at least until tomorrow.

I'm doing well. I can't talk on the phone here, but have wi-fi, and am taking great comfort reading all your well wishes.

Jim is a rock star

Jim is out of surgery. I haven't seen him yet, but both the neurosurgeon and anesthesiologist came by and said he did great! The neurosurgeon was very happy about the outcome (more on this later), and the anesthesiologist said Jim was among the easiest awake craniotomy patients he's had. Jim was awake most of the time, worked well with the electrophysiologist for the brain mapping (e.g., answered questions, followed commands), and was steady and calm the whole time. He did everything except reach in and assist with the surgery itself!

Thank you all for your prayers and support. Please keep them coming.

(our time stamp was set to Pacific time...I have changed it to Eastern. Sorry for the confusion).

Most dangerous part is behind us...

We didn't slip in the shower or get into a car accident on the way to the hospital. Statistically speaking, we're past the most dangerous part of our day.

The anesthesiologist and neurosurgeon each got a good nights sleep (thankfully they didn't have to get up at 3:45 like us). An electrophysiologist will work with them to map the brain. They have a solid plan for the day and are confident and optimistic.

We are feeling strong, thanks in large part to the support and love that has enveloped us these past couple weeks. Thank you. Jim was in good spirits when he went into surgery this morning. His parents and brother, and my mom, are waiting with me. We don't expect many updates throughout the the meantime, be patient and believe all is well.

Keep the prayers and positive energy coming.

Sunday, September 20, 2009

Zuzu's Petals

Tomorrow is the surgery. I am strong and confident.

I feel strong because I have an amazing family and amazing friends. I am overwhelmed and humbled by all of the cards, messages, phone calls, emails, and wall posts I have received. I want to map where all the prayers will be coming from tomorrow from all over the world. Special shout out to Keith and Ceci's friends and friends of friends who have filled my inbox all week.

Rarely does a person have a "George Bailey" moment in their life. This has been that moment for me. I am reminded of how many great people are in my life and how much they love me and Marcie and the girls. Thank you all for this tremendous outpouring of affection.

Thank you for keeping me in your prayers. Please pray also for Marcie and our parents as they will have a long day of worry tomorrow. I will be asleep for most of it. I got it easy ;-)

Talk to all of you very soon!

Peace and Love,

Wednesday, September 16, 2009

Let's help make Jim strong(er)!

We have been flooded by support from family and friends since "going public" last week about Jim's condition. Many of you have expressed a desire to help. Here's your chance:
Please take a minute between now and Sunday night to send Jim a quick message by email, wall post, handwritten card, yard sign—you choose. Tell him something you admire or appreciate about him (that shouldn't be hard). Or share a memory about him--something meaningful, or humorous (we laugh often). Let’s help make Jim as strong as he can be going into his brain surgery Monday.
Please pass the word.

And now for my next amazing trick!

I will have brain surgery standing on only one foot!

I was in surgery today but at the other end of my body. My ruptured achilles tendon was (finally) repaired today!

I ruptured the achilles tendon on my right leg the same week as my first neurological exams in August. I went to hurling practice with the DC Gaels and joined a scrimmage game. I was not expecting to play that night so I did not properly stretch and warm-up. I sprinted after a ball and felt a pop in my right calf. I knew immediately that it was a ruptured achilles. The emergency room was able to confirm this SIX hours later at 2 AM.

I went to an ortho the next day. He scheduled a surgery to repair it the next week. Usually this type of surgery needs to be done within a few weeks of the injury. Before that surgery could take place my golf ball was discovered. The ortho cancelled the surgery and wanted to wait until after my craniotomy. He also considered just casting my leg and letting scar tissue mesh the ruptured ends together. (Longer recovery and greater chance of reinjury but no surgery).

Long story short, we went with a different Ortho. The new Doc was recommended by the neurosurgeon. We met the new ortho who conferred with the neurosurgeon and we got the go ahead for leg surgery today! It was the neurosurgeon who recommended getting the leg done first.

Marcie and I were at Suburban Hospital in Bethesda at 5:30 AM this morning. We were very impressed with the facilities. More importantly, we met with the anesthesiologist who had spoken face to face with the neurosurgeon. He was able to reassure us that all information was shared and they had a plan that satisfied all three doctors. Special precautions were made to ensure no rise in cranial pressure during the surgery. I was in surgery for about an hour and came through with no ill effects. I recovered for a couple of hours and was home by 11:30.

I am in a splint and using crutches. The splint and stitches will stay on for two weeks. At that point I will get a walking cast. I have some mild discomfort but the pain pills are a welcome addition.

Note to "weekend warriors": An achilles rupture is common among people in my age range (35+) who do not work out as often as they should. Most often, someone joins a basketball, soccer, tennis, etc. game without stretching and warming up properly. That tendon is not as flexible as when they were younger. A quick push-off to make a move, lunge for a ball, or burst to begin a sprint can cause that tendon to tear. It makes a loud pop and feels like you have been hit in the back of the leg. Moral of the story: Take the time to warm up and stretch!

Friday, September 11, 2009

A child's view

Marcie: What is the doctor going to do?
Genet: Open daddy’s head.
M: What will the doctor do after he opens daddy’s head?
G: Get the yucky thing out.
M: Then what?
G: Daddy will come home.
That about sums it up.

We’re in good shape as long as the doctor doesn’t take Genet’s advice to crack Jim’s head open “like a egg” or Amara’s suggestion that he could use a hammer.

A & G’s brainstorming session about how the doctor could “put it back together” included:
*tape what looks like daddy’s hair
*a white thing what goes like this (with hand motions indicating a cartoon style bandage from crown to chin)
*glue (but it was determined that might sting, so it was eliminated as an option)

My suggestion that perhaps the doctor could sew it was met with enthusiasm...and color preferences:
“Pink! Pink and blue! 2 blue! Amara likes pink and me and Carrie likes blue!”

My attempt to prepare Carrie for possible questions from children at school was met with a confident (and dismissive), “I can handle it, Mom.”

I think they’re good.

Sunday, September 6, 2009

What you can do: An appeal to the St. Ambrose & Cheverly communities

We are blessed—and so grateful—to be surrounded by such a supportive community. We know you care for us and want to help. Below are a few things you can do:

1. Pray for us and our doctors. And have faith that this will all be ok.

2. If you have questions or want information, please ask me or Jim directly, or read the blog. Please do not ask our daughters for details. We have asked a few familiar people to pay extra attention and watch over the girls when they are at school. It would be helpful if everyone else provides expressions of concern and support to me and Jim directly rather than to or through our daughters.

3. Offers of playdates to distract the girls and give us a break are welcome and appreciated. We are so grateful to friends who were able to watch the girls during our many recent appointments (even without knowing the circumstances--thank you).

4. St. Ambrose Students: One of the aspects that makes St. Ambrose such a wonderful place is the care and love shown by the students. The natural inclination for students may be to share a hug with our daughters or ask “How is your Dad doing?” This is sweet, but with over 200 students in the school, it would be overwhelming for Amara and Carrie. We ask that you allow the girls to go about their day without interruption or reminders that their Daddy is sick. Carrie especially is very sensitive to unwanted attention from her Dad’s junior high students. She wants to blend in with her class. Amara is very distractible and needs to focus on her work and activities in Kindergarten. Please respect their space and privacy and allow them to go about their day normally so they can continue to feel safe and secure at school during this challenging time. If you would like to show your concern, you are welcome to send a drawing or card to the house, or offer to come over after school/weekends to play with them.

Thank you for helping us keep the girls’ routine as normal as possible, and minimize anxiety and stress.

Awake brain surgery

Although we are optimistic that Jim’s tumor is a low grade, in the brain, even low threat tumors can be dangerous because of the location. Unfortunately, this tumor is located near several important areas of the brain, including those responsible for speech and memory. So, the neurosurgeon must be careful to not cut or remove healthy brain that could impact the patients’ functioning. Our neurosurgeon believes the best way to do this is to keep Jim awake during the surgery. While the neurosurgeon opens the brain, the neuroanesthesiologist will sedate Jim so he will not feel any pain. Then the anesthesiologist will wake Jim and a speech pathologist will ask him questions to help the neurosurgeon determine the functional areas in the region of the tumor. The neurosurgeon will mark the boundaries so he knows where to cut and where not to cut. This process will not be painful. Then the anesthesiologist will put Jim back “under” while the neurosurgeon works to remove as much of the tumor as possible, while keeping Jim safe. They will wake him periodically for additional checks.

The surgery is estimated to last 8 hours. Jim will spend much of it sedated and will get a drug that will make him forget the whole experience. So, the neurosurgeon explained that the 8 hours will seem like 10 minutes to Jim…although he acknowledged it will seem like 2 ½ days to me!

Let’s not kid ourselves…this is brain surgery, and it comes with risks, some of which are pretty scary. The awake surgery should minimize many of them. Having the procedure done by a Top Doc using the best available technology should reduce them further. We’ll rely on prayers and luck for the little bit of risk that remains.

Our very own “McDreamy” (Grey’s Anatomy reference) does awake brain surgery at least once a week; he does more than probably anyone in the DC area. While scary for all of us, this is “where he lives”…this surgery is routine for him. He talks and jokes with patients during surgery and will keep Jim as comfortable as possible. He promised to treat Jim like his brother—and then he reassured us that he likes his brother! We have tremendous confidence in him and (most of the time) feel confident about the surgery.

Simple guide to awake brain surgery: