Under My Feet

Well, we have been home about 2 weeks now, & all the girls have returned from wince they came. And we are settling into the new norm. Don is progressing nicely. He still has issuses with headaches & being dizzy. And if he does much, it's like just getting off the mad teacup ride at Disney World. We have been out a couple of times, for short little trips to the grocery store or dinner. But even these seem to tire him out. But he is slowly regaining his strength. Now we have to find something to occupy his time. There is only so much TV a person can watch. Don is looking forward to getting back to work (I know, I am looking forward to him g0ing back). And he feels his progress will be well enough that we have booked tickets to be at the company Christmas party.

Don, our daughters & myself, would like to thank everyone for all their cards, e-mails, phone calls, letters & PRAYERS. They have ment so much to us all. It's sometimes hard to see how many people you touch in your life time, but something like this can really let you what you mean to others in your life. This will be our last update. we want to thank you all again.

Nancy, Laura, Sandra, Kathryn & Don

Home Sweet Home...

At last, home sweet home. Dad's ivory chariot arrived at home late this afternoon. The drive was long and tiring for everyone involved, but the consensus is that it was worth it. After being strapped in the passenger's seat for over a day and a half, dad said it felt good to get out and help carry the luggage into the house and unpack some things. Of course it wore him out a bit and soon he found his favorite recliner and a pudding cup snack before a nap (some things never change). Welcome home Dad!!

Homeward Bound

Dad got out of the hospital today at 10:30AM! As he was lifting himself out of his wheel chair and into the car he commented that he could not believe that, after having massive brain surgery just over five days ago, he was standing and putting himself into his car on such a beautiful day.

Before being discharged from the hospital, Dad got a chance to talk to Dr. Mayhan, Dr. Spetzler's assistant. He said that Dad's MRI looked as good as it could. That he did not see any signs of the cavernous angioma and that he and Dr. Spetzler were confident that they got it all out. He did say that medically, there is a slight risk that some residual vein could remain and regenerate. But, we will not know that for sure until he does a follow up MRI in a year. But, Dr. Spetzler did not feel like that would be an issue.

Dad is resting now in our hotel room across the street from the hospital. Mom and I are taking care of him now. We will leave in the morning to head back home to Texas. We are going to take our time and should arrive by Saturday afternoon.

Dad has a long road to recovery still. He will have to work hard over the next couple of months to regain his strength, get over the headaches and nausea and work with a therapist to get over the dizziness. He continues to have loss of feeling on the right side of his face and ringing in his right ear. These may or may not subside over time.

We will continue to keep you posted on Dad's recovery. We want to thank everyone again for all your thoughts, prayers, and well wishes. We have been overwhelmed by the support.

And now there are three

The nine family members have now become three: Mom, Aunt Diane and me. Aunt Diane is staying with Dad tonight so Mom and I can get some rest. We are hopeful that he will have as good of a day tomorrow as he did today and might be able to go home soon.

He had a rough start to the morning. But after convincing him that he can not control his pain with only an ice pack and his nausea with just a cracker, he did quite well. He went for two walks, ate all his meals sitting up in a chair and carried on several long conversations.

The sign outside his ICU room still reads, "Pending transfer." Maybe we will just be transferring right out of the hospital and going home.

Hanging Out in ICU

Well . . .Dad is still "hanging out" in the ICU waiting on a bed to open up on the neurological post surgery floor. They took out his A-line and Central line today. He is still taking oxygen and on the monitor because his levels fall off while he is sleeping due to the pain medications. Mom is staying with him tonight. They said it is possible he could get moved to his new room over night.

Tomorrow he will begin working again to get his pain and nausea under control and on being able to stand on his own so he can go home.

I'm Free!

. . .of tubes anyway. Dad had a decent night last night; he slept in 30 - 45 minute intervals. He was rudely awakened at 5:30 this morning by a neurologist who removed his lumbar drain (spinal tap). She had to remove the sutures holding it in and then put in one stitch to close it up . . .all without any anesthetic. It was apparently quite painful. They unhooked him from most of the tubes/wires etc. He sat in the chair to eat breakfast and then the physical therapist took him for a short walk. The physical therapist said that of the people she sees who have had this surgery, he is one of the best she has seen. He is doing remarkably well.

It was an eventful morning and all the movement has made him very dizzy and nauseous. They gave him some anti-nausea and anti-dizzy medicine so he is napping now. He will be moving to a regular hospital room this evening when they have the room. He will just continue to work on sitting up and standing on his own to be able to go home.

Settling In for the Night

Dad did better this evening. He finally got some medicine to help him with his nausea and pain. He took a really long, restful and much needed nap. He actually ate potato soup and fruit for dinner. He got a bath and his wonderful nurse, Joyce, helped him get really comfortable.

He admitted he did not sleep well last night because he was nervous that the nurse did not know what he was doing (my Dad the worrier . . .so that is where I get it). I am staying with him tonight and hopefully he will get some sleep.

Now if we could only get the zamboni floor cleaner to stop driving by! Seriously, that couldn't have been done during the day?!

Expect Good Days and Bad Days

A sign posted in the waiting room reads, "expect good days and bad days." Well, we have experienced that today. Dad had a rough night and a rough start to the day today. The anesthesia is wearing off and he is on oral pain medication now. He is experiencing a lot of pain, dizziness and nausea. He is really uncomfortable in his bed but changing positions or sitting up is really hard for him. He is not eating much today other than fruit and crackers.

We are still waiting on official results of the MRI but he was told initially that it looks good.

Good Night Moon...

After getting kicked out of dad's room for the night his MRI appointment got pushed back to an unknown time (deja vu, this happened over labor day also). By the time we finished dinner he had completed his MRI and we will find out the results in the morning. He was able to eat solid foods (half a sandwich), sit up for quite sometime without becoming too nauseous, carrying on quite a bit of conversation. However dad did get a bit tangled up in all of his tubes and became flustered, Laura and I managed to defuse the situation by having the nurse unplug and replug everything in a more organized fashion. The male night nurse on duty tonight was a bit bumbling, he would trip over things and was a little bit scatter brained, but after bringing this up he was nothing but apologizing and accommodating (however still a little scatter brained). But Sandra is staying with him in the ICU tonight.

Once again, thank you for all the prayers and thoughts you have been sending our way, we truly believe that we are lucky that dad is doing so well and got in to do the surgery so quickly (judging by other cases we are hearing). It is nice to know we have such a strong community around us to support Dad.

Jumping Through Hoops . . .

. . . or stumbling over tubes as the case may be. Dad was able to get out of bed today and sit up in a chair for about 10 minutes. It was an hour long process of unhooking and untangling tubes as he stood and took about two steps to a chair positioned beside his bed. He faced the window that overlooks the hotel where we are staying with the beautiful Arizona skyline in the background. Unfortunately, he was a bit too dizzy and nauseous to take it all in. He is resting now after that adventure. Now we wait for the MRI.

Hello Sun

The sun is shinning in on the Trofholz ICU room this morning. Dad got to have water this morning and gets to order what ever he wants for breakfast. Aside from some pretty significant pain from the surgical sight, he is swallowing fine and does not appear to have any neurological deficits beyond what he already had going into the surgery. Up to this point, he is making a miraculous recovery. We want to thank you all for your prayers; they clearly have been working.

He got to see Dr. Spetzler again this morning, which was a welcomed surprise. Dad asked him if he got it all out. Dr. Spetzler said they got everything they could see and that they would follow up with MRIs to be sure but that he felt really good about it. Dad was visibly relieved.

He is scheduled for his first follow up MRI tonight at 7:00 Arizona time.

Dad says, “Happy Halloween.”

Good Night Moon

One last post for the evening. There's not much more to report. We all got to say goodnight and Mom is staying the night in his room. We hope he'll be able to get as much sleep as possible tonight in between all the poking and prodding and questions.

"I need ice chips, bad"

A direct quote from dad just a few minutes ago, "I need ice chips, bad". We finally got to take our turns to visit dad in ICU. He has a short, spunky nurse with a great accent named Tatayana. I'm not sure if dad will be her biggest fan, she wakes him up every hour asking his name, the date, and where he was at and to give a big smile. She's also very stingy with the ice chips, but it seems dad has been able to finagle some from his unsuspecting family members.

He's definitely tired and worn out and has some discomfort. They are keeping close tabs on all of his vitals and administering pain medication accordingly. He has good strength in his arms and legs and is talking and answering all of the questions correctly (well, for a minute there I thought we were going to have to convince the nurse it was the year 2002, but then he corrected himself). His head hurts and his back is sore where the spinal tap is. But all in all, it seems as though the recovery is on schedule. The nurse has already seen improvement in his smile.

Our time is limited to two of us at a time and for a limited amount of time at once. It's hard to see him all drugged, groggy, hooked up on tubes and wires and vulnerable...but it's great to see him and hear him and know that he's on the road to recovery.

One Step at a Time

Well we just got our 15 seconds with The Doctor Spetzler. He said everything went well and they think they got it all out. We just have to take it "one step at a time". Only time will tell what side effects there will be from the surgery, temporary or permanent.

Piece of Mind...

His piece of mind, is our peace of mind. The Anesthesiologist came out to tell us that the surgery was finished, he's all put back together (minus one piece of ugly tumor) and is in the recovery room. He did so well that they were able to take his breathing tube out and he will be a little more responsive then we originally thought, though still pretty groggy for the next day or so.

A few minutes later the Resident for Dr. Spetzler came out to tell us that the surgery went really well and they don't anticipate any complications to arise during this immediate recovery time. He still has his spinal tap to drain the fluid off the brain for the next couple of days to help prevent additional swelling.

Dad will spend about 45 minutes in "recovery" before being moved to the ICU. Once he's there and settled, they will start allowing us to visit him one or two people at a time. We are estimating about an hour and a half or so before we'll get to see him.

We have not seen Dr. Spetzler post-surgery yet, but he (and his entourage) is supposed to come out and talk with us at some point, which is a rare experience, to give us the details of the surgery.

Stay tuned...

Hurry up and wait

Well, we are a few hours into the surgery now. We know that 2 hours ago they had made the incision and cut through the skull to start the surgery itself. Now we just wait and...wait...and wait some more.

We have officially taken over the front half of the waiting room (9 people, 9 chairs, 2 tables, 10 bags, 6 laptop computers, and 5 iPhones). The staff here has been wonderful so far. We are leaving in shifts for lunch and walks. Mom has a hospital issued pager with her at all times so that if they need to get a hold of her and she's not in the waiting room, they can page her.

Other than that, we're just...waiting. Thank you for all the wonderful comments and best wishes. The support and love is greatly appreciated and so inspiring.

Hope, Faith, and Love

"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today"- Thich Nhat Hanh

We walked over in our parade to the hospital this morning( Dad, Mom, Myself (Kathryn), Laura, Sandra, Dave, Linda, and Don) to meet Grandma(Dad's Mom) and Diane). This is a scary experience, but knowing that this makes Dad happy, knowing that this weekend could make all the difference in the world for the better, it makes this whole experience more hope full and a lot less scary. He is already talking about his next big adventure (Hiking in the Grand Canyon).

After we all went in for hugs and the final talk from the doctor, Dad was about to describe how he did not like the pinchy thing on his finger when the anesthesia hit. However, they told us that he will not wake up tonight except to check for reflexes, this is because of the air tube that will be down his throat. He won't wake up till tomorrow but it is anyones guess at when, because of the deep sleep they are putting him in because they are working on his brain.

He has just entered the surgery at 9:08 (arizona time / 11:08 Central time) There is 45 minutes of in surgery prep So this makes it between 5-6 before we will know anything.

"Anyone in the world can give up, it's the easiest thing to do. But to hold it together when everyone else would understand if you fell apart, thats true strength "

and frankly, My Dad is the strongest man i know.

PS

After Dad's "stroke" he started referring to his life as "PS" or pre-stroke/post-stroke. Well I guess after Friday it will have to stand for post surgery.

Ah yes, the surgery. Just so everyone is aware what the surgery entails (skip this paragraph if you have a weak stomach). Apparently, the team of surgeons will start with a 4 inch incision just behind his ear at the bottom of his hair line (he is quite happy that he did not have to get the "buzz" cut he thought he was going to have to do after imagining that he would be bald on half of his head). Then a bone extraction specialist will cut a 3 inch diameter hole from his scull. Once the area is ready, Dr. Spetzler will go in and microscopically remove the affected vein/blood vessel. Once done, the other surgeons will replace his scull bone and secure it with a titanium plate (the doctor assured him that titanium does not set off metal detectors at the airport) and then sew him back up. He will likely be in the hospital recovering for 7-10 days.

So, post surgery, according to Dr. Spetzler, Dad has a 95% chance that this will be successful. He will likely have temporary paralysis much like what he experience before from the swelling that will occur from the surgery. The malformation is near the area of cranial/facial nerves and specifically very close to the trigeminal nerve that controls feeling on the top right side of his face and back right side of his tong. He has not completely regained feeling in these areas from the bleed that he had on Labor Day but it has been steadily getting better. The hope is that what ever paralysis he experiences after the surgery will rapidly get better over the next 6 weeks on its own and with therapy. It is possible, however, that he could take up to a year to fully recover.

We are guardedly optimistic that PS will now be a happy term in our family and will refer to a life free of worry, free of can't do, free to be free.

PS . Daddy . . . we love you!

Look, Kids...Big Ben...Parliament

OK, so it’s not a European vacation, but it does sound relaxing and much needed I’m sure. Since Mom and Dad drove to Phoenix last week for the consultation with Dr. Spetzler they decided to just backpack across Arizona and the surrounding area (or the next best thing, drive around in a rather large SUV with the back full of luggage) until they had to be back for the MRI and surgery. Over the weekend they took in the sights of the Grand Canyon and for the last several days they have been “touring” Phoenix and chillaxing by the pool. I think dad might have managed to squeak in some time to check e-mails and do a little work from the hotel…are any of us really all that surprised?

Tomorrow around 1:00PM (MST) is the final MRI before the surgery. There will be some logistics that have to be worked out with the hospital as far as when he has to be back in on Friday, what he can and cannot eat prior to the surgery, etc. Luckily, he does not have to stay the night in the hospital the night before the surgery and we will get to spend some quality time with him. But we promise to get him to bed early for some good rest for the big day.

Several family members are traveling to Phoenix for the surgery, some arriving as early as today, and the rest trickling in throughout the day tomorrow. We will all have a strong support group and my dad will have loved ones by his side, and a slew of family and friends from all over the world sending their love.

What to do, or what not to do, that is ONE of the questions...

After waking up in the middle of the night with a gigantic headache and, what he seemed to think was a bug bite on his face causing tingling, Mom made the brilliant assessment that dad might be having a stroke. He was checked into the hospital in the early morning on Labor Day (he's still bummed he didn't get to smoke his brisket that day) and was told he had had a stroke. Further tests showed that the stroke was the result of a Cavernous Malformation, or Angioma, in the Pons area of his brain stem that had bled onto his brain causing swelling and resulting in the stroke. Since this diagnoses there has been an overwhelming amount of questions. What's next? How bad is it? What are my options? Will it bleed again? And if it does, how bad will it be?

Even though he has recovered quite well from the stroke, it didn't mean that ugly "tumor" was gone. So after many second (third, fourth) opinions, dad was referred to a Neurovascular Surgeon in Phoenix, AZ who specializes in cases like his and is the best of the best. With other doctors suggesting "keeping an eye on it" vs. surgery, the idea that any surgeon would operate on this was absurd. However, all of the MRI's MRA's and CT scans were put on a little DVD and shipped off to Dr. Spetzler in Phoenix.

At this point, dad was settling into the prospect that things were going to change one way or the other. He worked it out so that he can work from home in Texas now instead of Michigan. But all this time, the idea of a "ticking time bomb" in his head was weighing on him. Then, doctor Spetzler's office called and informed him that the Dr. does think dad is a candidate for surgery and would like to set up the consultation, MRI and surgery, all the next week. Yah, I know, whoa, slow down there. Still surprised by the news that he was even a candidate for surgery, dad scheduled just the consultation.

Here come the questions...What does surgery mean? What are the risks? How is it done? How many of these surgeries has this doctor done? Why am I candidate? Why wouldn't someone be one? What's the recovery period? Should I do this? Or should I wait to see what happens next?

After many sleepless nights and deliberations, another reputable neurovascular surgeon’s opinion, and the consultation with Dr. Spetzler in Phoenix, the surgery is scheduled for 9AM Friday, October 30, 2009.

Well, as it turns out, maybe it is

Made famous by Arnold Schwarzenegger, the phrase "it's not a tuhma" was popular in our home whenever someone had a headache. All joking aside, we want to thank you all for the wonderful support, love, prayers, kind words and best wishes, as well as the cards gifts and helping hands. And with that, we have noticed how many wonderful people our dad has in his life and that no amount of time will allow us to make phone calls to each and every one of you every time we hear something new. So, we've created this blog to keep everyone updated on the happenings of our dad. Feel free to check it often and to leave comments. We will strive to keep you as updated as possible throughout dad's journey of brain surgery and recovery.