Wednesday, November 24, 2010

Happy Thanksgiving

Hi everyone,

I can't believe it's almost Thanksgiving.  What are you thankful for this year?

I am thankful for mindless crafting, my dog, and Harry Potter.  And some more stuff, but those are the first things that came to mind.

I apologize for my last entry, which you will notice I have taken down - at least for the time being.  It was more about me and less about dad.  In journalism they say that you're not doing your job unless you make somebody mad.  Or in my case, lots of somebodies.  Of course, it's a little bit harder when it's your family that is mad.  And not, say, the entire UAH Publications Board - but that's a story for another day.  See, growing up I was a self-editor.  You know, one of those overly awkward, ugly-duckling, type of kids that filters what they think and say to make people like them more.  And then a few years ago I got tired of it.  Really tired of it.  Now I'm just honest, plain ol' Sarah.  I just call things how I see them and let the pieces fall where they may.  You make less friends that way, but probably a better politician.  You know, in case I ever decide to run for the senate. 

Dad continues to progress well at home.  For the most part his pain is under control and it looks like he probably won't need another round of steroids.  His speech has also improved significantly.  This is great news!  He goes walking every day and when he thinks we're not looking he does things he's not supposed to - like work in the yard or ride his bike.  I know everything dad, muhahahaha!  He isn't allowed to drive yet, but I know he is anxious to get behind the wheel of our stunning kidnapper-esque white van.  He plans to go back to work full-time next week, but of course we are worried that he might be overestimating his stamina.  And then he reminds us that he is flying a desk, not the space shuttle.  Touché.  I'm sure the Jacobs folks have missed that sense of humor.  All in all I guess things are back to normal - meaning the two of us are driving each other crazy, just like we always have.  I nag him to wash his hands and cough/sneeze into his upper arm and he follows me around turning off lights because he thinks I'm running up the power bill.  I promise I'm not, dad.  I just meander in and out of my bathroom a lot. 

When we were researching treatment options, we noticed that the Stanford website says that patients  who undergo the moyamoya bypass surgery cannot engage in certain activities afterwards, like skydiving or scuba diving.  They also have to avoid wearing hats and helmets that might occlude the artery that was rerouted from under the scalp into the brain.  I asked a lot of the doctors and nurses that we met what would happen if it was occluded - just so we would know.  The most definitive answer came from Dr. Jaffe, who said he would experience symptoms similar to those he had during his TIA.  Sure enough, despite having his glasses adjusted once so that they didn't press on his temple as much, Dad was sitting at the computer yesterday and his right hand and arm began to go numb.  After about ten minutes he realized what it was, took off the glasses, and the feeling began to return.  I guess that's a good sign that everything is working as it should.  We had to go get his glasses adjusted again yesterday, but that's so much better than having the threat of a major stroke hanging over your head.  Still, it's funny to think about.  I always sit with a leg tucked under me.  If my foot goes numb I know to shake my leg a bit to get the blood flowing.  If dad's arms or legs start going numb, or his speech slurs, he has to remember to take off his glasses and, um, shake his head? 

More later.  I promise I have a backlog of entries to finish.

Love,
Rocketgirl

Thursday, November 11, 2010

Day 10 - Leaving the ICU - Part 2

Hey everyone,

So after all the commotion mom and I finally had a chance to sit with dad in his room and chat.  In addition to severe pain, he was also pretty cranky because there had been a "parade" of people through the room that morning.  Not only were there doctors, nurses, and nursing assistants, but the chaplain had stopped by (not me), one of the art therapists (me), a classical guitar player (me), and a few more.  I think he actually liked the guitar music.  It probably reminded him of Brian who plays quite beautifully.  He didn't do any art.  He said the lady was just there to "peddle her wares."  I felt kind of bad about that.  When I gave the girl at Guest Services his room number and the dates that he would be in the hospital I didn't realize that everyone would show up at once.  "G" is a neurological post-op area.  You think they would realize that bombarding these patients isn't a good idea.

So in the same way Rachel and Gina thrust a sandwich at Joey in the episode of Friends where Gina tells Joey that she is pregnant (big time Friends fans at our house), we thrust a small paper bag at dad to intervene.  Being that it was Veteran's Day dad had really wanted a flag for his room.  We were happy to oblige, especially since balloons and flowers aren't allowed in the ICU rooms, but boy is it hard to find a flag around here!  In fact, it was part of the reason we were so late getting to the hospital.  We called all of the nearby stores and florists before a tip from a hotel employee led us into Palo Alto, the little city next door to Menlo Park, to a party store.  That had gone out of business.  But it was such a cute area, very pedestrian.  Kind of like an upscale Carlisle, Pennsylvania for any of you readers that have attended or visited the Army War College.  So we parked and after walking around for a bit we stepped into the University Art Store and talked to some nice ladies who suggested we check the United Nations Association Store up the street.  Who knew that UN had a gift shop?  It's pretty neat.  We were in a hurry and didn't have time to explore the downtown area, but would like to go back before we leave.  I snapped a few photos of things that caught my eye.


Inside the UN store.  Everything they sell is fair trade.

It's practically flag headquarters.  What a neat find!

The Peninsula Fountain & Grill.  We haven't eaten there yet, but it's something of a local landmark.  Since it was a holiday there were tons of people out walking, shopping, and eating!  There was the cutest bunch of 10-12 year old boys on bikes stopping for burgers and a milkshake.  It was like going back in time.

Have you ever seen a cuter post office?

The nurse in charge, Christine or Chris for short, said it was time to remove dad's central line from his chest.  He had to be lay very still for an hour to prevent any bleeding.  Meanwhile the PAWS lady stopped by and said that they had a dog was there today and that she wouldn't be back until next Monday.  I really, really, really wanted to see the dog.  I'm not sure dad cared one way or the other since he felt lousy, but he said they could stop by on their G hall rounds between 4 and 5 p.m.  At 4:15 Chris said he could get up and because there was no dog in site dad wanted us to walk the hallways.  See, if you have major surgery and/or are going to be bedridden for awhile they make you wear these leg compression "stockings" which fill up like a blood pressure cuff to force the blood in your legs back up to your heart.  It's supposed to prevent blood clots which can cause all sorts of problems.  Dad hates the stockings.  The only way to not wear them is to get up every so often and walk.  And so that was his plan.  Our little family was on its third lap when I caught a glimpse of the dog, it's owner, and the PAWS lady leaving.  I jogged and caught up with them and begged them to come back.  It was all a little confusing due to language barrier issues, but it worked out.  I think it is really neat that the hospital employs so many people who are from other countries and learned English as second language, but it can also be frustrating because I've found that some of them will think or say they understand what you are saying and act on it, when they really don't.  Like with the night nurse.  That can be dangerous.

Anyways, the dogs name was Rita and she was so beautiful.  The owner probably thought I was crazy because I sort of got down on her level and after petting her a bit hugged on her.  She's a bit larger than Winnie, but had a similar personality.  He said he thought she might be part Collie of some kind, but I think she has a lot of Australian Sheppard in her.  She's 14 years old and he has had her for 12 of those years.  He adopted her from a shelter after she had been hit by a car and undergone some pretty extensive surgery on her leg.  Despite pins and plates she went on to become a frisbee champion.  The only downside is that frisbees have pretty much destroyed her teeth.  She only has nubs left and you can actually see the nerves.  He loves her dearly though and she looks and acts more like a four or five year old dog.  We got to play with her in the G waiting area and of course I snapped a few pictures.  I was sad that she only got to stay about 10 minutes.  It was really nice.





After Rita left dad was feeling pretty bad and needed to get back into bed, have is IV hooked back up, and take his medicine.  I shouldn't have pushed to see the dog.  We set up the chess board and he told me about the different pieces and how they move, but he wasn't up to playing.  And it was dinner time.  Chris' shift ended and Catherine or "Cat" for short came on.  Mom and I stayed pretty late, maybe until 10:30 p.m.  Visiting hours technically end at 8 p.m. but nobody said anything. 

I was so tired and pretty hungry too.  Like most of the families there we have been keeping pretty odd hours.  I know in Huntsville that at least some parts of our hospitals' cafeterias stay open all night, but that isn't the case here.  So we headed over to Oasis since we knew for sure it was open.  Also, I had been craving some pizza.  I figured it would be just about empty, but the place was hoppin'!  There were tons of people from Menlo College.  I think they had just left a volleyball game.  The manager Bobby greeted us with his usual, "Hey!  It's my friends from Alabama!"  And I realized that I can pretty much find a friend anywhere.  Except places crawling in gorgeous sorority type girls.  Or reaaallly smart people.  They both tend to scare me.  Also that Oasis is like my California Bandito Burrito.  We ordered and when I went up for a refill on my Diet Coke, Bobby asked me about dad and introduced me into one of the locals, Stan.  The two of them are so nice.  We ate and headed back to the hotel at which point I was so tired that I really wasn't safe to drive.  I'm glad that there wasn't much traffic and that it was only four miles.

Whew! 

Love,
Rocketgirl

Day 10 - Leaving the ICU - Part 1

Hi everyone,

One of the interesting things about Stanford University Medical Center is that if you have a patient in ICU you can create a password at the nursing station so that you can call and check on your person.  It protects patient privacy and keeps family informed as they don't allow phones of any kind in ICU rooms.

Our password was of course, Rocketman.  So we would randomly call and say, "The password is Rocketman."  I tried to get mom to say it in a hushed James Bond kind of way, but she wouldn't.  Dad would have thought that was funny.  It's like back home whenever we go through the McD's drive through to get grandma a bacon cheeseburger and David tries to get him to order in funny voices.

The big news today was that dad was moved from neurological ICU on the second floor to the neurological ward (G) on the first floor.  Here is a fun fact - none of the buildings in the area can be more than three stories high due to earthquake risk.  He was supposed to go to a regular room, but ended up in what they call a step down room.  It's on a regular floor but is assigned it's own nurse who cares for the three patients staying there.  It's not clear whether he was put there because the hospital is operating at maximum capacity and that is literally the only free spot they had in G, or if it was because they thought he needed more close attention than a regular room where the nurse hangs out at the main desk unless she is needed.  Either way, it is probably for the best.

We got the morning update via the phone service and kind of took our time getting to the hospital.  We slept in because we had been so tired and then mom did some laundry.  We each only packed enough clothes for one week.  I looked at the fliers for guest services and decided to sign dad up for some stuff.  They have a lot of cool things like music therapy, art therapy, and PAWS or Pet Assisted Wellness at Stanford.  And it's all free!  And as the nice O.R. tech I had talked with on Wednesday pointed out, by using the services you're providing somebody with job security.  I mean, when you put it that way, gosh, it's like your obligation to use the services.  :-)  So I signed him up for art therapy, requested an in-house musician to come visit him, and PAWS.  Family is allowed to participate in the programs too, so I thought even if he wasn't into art therapy that mom and I could do it.  Not that he would, but I kind of have a mental image of him throwing some oil pastels at an unsuspecting therapist. 

It was a beautiful day in California.  It seemed like everything was just a little brighter and more cheerful than it had been the day before.  Or maybe it was because we had been getting to the hospital so early and leaving so late that we just hadn't seen sunshine in awhile.  Either way - life was good.  We got to the hospital later than we would have liked, around lunchtime, but then realized that the step down room follows ICU visitor guidelines, so we couldn't have gotten in before 11 a.m. anyways.  C'est la vie. 

The first thing I noticed was that Dad looked sooo much better, although exhausted.  His normal coloring was returning.  He was also more coherent.  He was still in pain though and as expected the swelling had set in.  I would estimate that the left side of his head was about 30% larger than normal.  He said he looked like the elephant man - so I had to look that up.  And I have to tell you, he didn't look anything like the elephant man.  Also, the elephant man has a name.  It's Joseph Merrick.

Dad said he had a miserable night.  They don't let you sleep much in ICU.  They're required to wake you up every fifteen minutes to check on you.  And he couldn't have slept even if he wanted to.  He was in so much pain.  I was livid.  He said the night nurse messed around with medications, trying different cocktails, until about 3 a.m.  I'm not sure if a surgery resident had been called or stopped by to check on him, but they said he could have up to 100 micrograms of fentanyl in addition to the percocet.  She only wanted to give him 25 or 50.  Finally dad told her to stop screwing around and give him the whole 100 that the doctor said he could have.  The dosage made him woozy for 10-15 minutes, but it was the first time that his pain and become tolerable.  Fentanyl is a very short-lasting drug, which is why they were using it in combination with the percocet which is longer lasting.  When the fentanyl wore off she wanted to drop the dosage down but he convinced her not to mess with success.  The idea is to keep the pain in a tolerable range because once it gets out of that range getting it under control again can be very difficult.  I wondered if we should complain or something, but dad said she did a lot of other things right.  But still, if it could help the next patient...

Not only was I mad about the nurse, I was mad at myself.  I shouldn't have left without knowing that everything was going to be okay.  I let him down and I knew it.  They wouldn't have left me if the roles were reversed.  The first week we were here different relatives would joke with me about not messing anything up.  It's a lot of responsibility and I take it very seriously.  During testing I felt that I had a lot of control, we had a lot of control.  But honestly?  Once they wheeled dad away to surgery, all of that control was lost.  And that, for me, was terrifying.  I wasn't there to remind them of all the important things that could be forgotten.  And doctors are only human.  They do make mistakes.  I watch Discovery Health.  I know these things.  And the ICU wasn't any better because we weren't allowed to stay and protect him.

Over lunch mom and I decided that we needed to do something.  Or talk to somebody.  So first I sent Sandy, the research assistant, a text message.  Now, she's not a doctor or a nurse, but she is familiar with how things work, is the nicest person on the team, and is also the most accessible.  We also talked to Brian just to get his thoughts on the best way to approach it without stepping on toes.  Ultimately we decided that we just needed to talk to one of the doctors or residents and make a non-accusative inquiry as to what they're procedures are, how decisions are made, etc.  We also didn't want to make dad anxious so we decided not to talk about it in front of him.  (Sorry dad.)

Before we could get any further than that we ran into Dr. Jaffe, the super nice attending anesthesiologist, who was just coming back from visiting dad.  He's just one of those people that I connected with and before I realized what I was doing I asked if we could talk to him about some concerns.  And he was so incredibly sweet.  He led us out to the G waiting area and said he had all the time in the world to talk with us.  And he listened and explained.  I told him that I didn't want to step on any toes, but that as a pre-med I was at least a little bit better informed than the average Joe and had a lot of concerns about dad's pain management and how decisions were being made.  He said that the only time you can be pain free is under anesthesia when the doctors can titrate the drugs and intervene immediately if your body responds negatively.  After surgery he said the doctors write orders for painkillers in anticipation of what they expect.  Also, that if a certain painkiller doesn't work, what else the nurses can try and in what dosages.  It made a lot more sense.  I don't think the night nurse did anything wrong per se, but that maybe she didn't take his pain seriously enough.  Jaffe said dad was definitely an outlier - meaning that he had more pain than the average person who has that operation.  So either he has more pain receptors or maybe they are just more sensitive.  And she was trying to get him off the fentanyl because you are supposed to be off of IV painkillers before you can go to a regular room.  In fact, that might be why he is in the step down room - because fentanyl has to be administered pretty frequently.  I felt so much better after talking to him.  I just wanted to give him a hug.

If fact, if they had an adopt-a-grandpa program I would take Dr. Jaffe in a heartbeat.  He even has a fancy Mickey Mouse pen.  A man after my own heart.  It's like your typical business man pen - black, small, and metallic.  But it has Mickey ears on the top!  And the clip that holds it into his shirt pocket is gold and has Mickey's gloved white hand on the end.  It looks a lot like this one, but I think his is made by Colibri.  I think they must not be made anymore, because I can only find them online in auction sites.  Sadness.  Either way, Dr. Jaffe says we should just hop a plane to Anaheim and visit the Mouse on the way home.  That would be fine with me.  :-)

Then the Mom, Dr. Jaffe, and I all went to see dad together.  We chatted for a few minutes but then he had to go to his 3 p.m. meeting.  We walked him out and after he left we ran into Theresa, the surgeon's nurse practitioner.  Now dad really likes her, but she didn't make much of a first impression with me.  In fact, she kind of reminds me of  Ms. Trunchbull from the Matilda movie.  I assume that Sandy had forwarded her my text, because she fussed at us for breaking the chain of command, etc.  But I'm not sorry.  She is hard to get in touch with and I hadn't interacted with her at all prior to coming to California.  So it definitely soured my afternoon, but I had to do what I thought was best.

More later.

Love,
Rocketgirl

Wednesday, November 10, 2010

Day 9 - Surgery - Part 3

Hi everyone,

We went in for out initial visit with dad at 6 p.m.  As planned he was in the neurological ICU, which is its own separate area. There is also a cardiac/pulmonary ICU in another location.  Dad had his own room and his own nurse.

The room was dark when we entered, with the exception of the ambient glow of the nurse's cart.  I assumed this was so because some patients suffer from light sensitivity after the surgery, or at least that's what I've read.  We approached the bed and dad was moaning in pain.  I could see the surgical wound.  It stretches from his left temple up the side of his head and is about five inches long and covered by a somewhat bloody bandage and waterproof tape.  It is all very tidy, right down to where they trimmed his hair.  He also has some scabs on his face from where a "halo" had been screwed into his head to keep it from moving during surgery.  He has an IV in both his hand and foot, an arterial line in his wrist, a central line in his chest and a catheter. There was a folded blanket almost on top of his face, as though he was trying to use it as you would an ice pack.  "My head!  I need something for my head!  It hurts so bad!"  He repeated it over and over and over.  It just broke my heart.  They had him on fentanyl during the surgery and he was supposed to continue it after the surgery as well, just at a much lower dosage.  They have to wake you up enough to do a neurological exam and make sure that everything that is supposed to be functioning is functioning.  Unfortunately that is more important than patient comfort.  The nurse, Katie, seemed very sweet and said she had just given him some and that he couldn't have more for an hour.  What can you do?  You just keep telling the person that you are trying to get them some painkillers even though you can't.  It's awful.  He was literally writhing in pain.  I felt so useless.

The nurses here work 12 hour shifts starting at either 7 a.m. or 7 p.m.  Katie told us that she was going to continue to try to get his pain under control but that when we came back for the 9 p.m. visit there would be a new person with him.

Mom and I went down to the cafeteria and scrounged for something to eat.  It was so close to their closing time that there wasn't much left.  We finally settled on some individual pizzas and some very unusual salads we concocted from what was left on the salad and fruit bar.  Mine was spinach, orange slices, raisins, white cheddar and plain yogurt for dressing.  It was interesting...  Honestly though, we were so tired that we didn't care much what we ate.  I returned as many calls and messages as I could and just kind of collapsed at our table.  Mom talked to David and kept saying that we were going to go see dad in a few minutes.  I was surprised that nearly three hours had gone by.  Oops!  They hadn't!  Between changing time zones, the end of daylight savings time, the insane schedule we've been keeping, and the stress - well, we're all kinds of confused.  We realized that it was only about 7:30 p.m.  So we walked to the other end of the cafeteria where there is a Starbucks/Mrs. Fields kiosk that never closes.  We bought a chocolate fudge brownie to share and decided to go back to the surgery/ICU waiting area to eat it and wait, mostly because they have free Starbucks there.  I guess the Starbucks must come from the main part of the cafeteria though because it was gone.  Boo.  So we found a seat to wait and chatted with a few other people.

We went back to dad's room at 9 p.m. and not much had changed.  Before he had been a 7 on the pain scale and now he was a 6.  He looked so miserable.  He was still writhing, still begging for anything to take away his pain.  The new nurse - I never did catch her name as she had a very thick Chinese accent, didn't give me a good vibe at all.  The only thing that made me happy was that she was giving him percocet with the fentanyl in an effort to control the pain.  When I had quizzed Katie earlier about the possibility of using two pain medicines concurrently she said that they try not to "polypharm" patients because if they do and there is a reaction it would be impossible to tell which drug caused it.  At the time I didn't push the issue because dad is allergic to, or at least sensitive to, a whole slew of prescription painkillers.  I guess I didn't realize how difficult that would make his pain management.

Mom and I mostly stood around the bed.  We seemed to take turns - one of us talking to dad, the other talking to the nurse.  We told dad about how the doctors said that they couldn't have planned for the surgery to go better, that the blood flow to the left side of his brain had increased by 10x and would only get better, etc.  He understood most of it.  I told him how many people had been in touch with me regarding his status and I know that meant a lot to him. 

We asked the nurse a lot of questions.  She seemed very knowledgeable, but a little perturbed that we would "question" her authority, even though that wasn't what we were tying to do.  We wanted to understand what they were doing to manage his pain and how those decisions were being made.  After all, the doctors had told us that his head would hurt, but that it wouldn't be the worse headache he would have.  The Stanford Moyamoya website also downplays the post-op pain.  So in our eyes, something was wrong - not necessarily with dad or the surgery - just with the pain management.  I asked who I could talk to, but due to the language barrier I'm not sure she understood what I meant.  She said that you talk to the nurse if you have concerns (because it was going so well already) and that if she thinks there is a problem she approaches the doctor.  Then she was telling me that they were having to watch his blood pressure because it was high - and talked about giving him lisinopril, which they had previously stopped.  While that would be appropriate, I felt that getting the pain under control would also help.  Then she said he was going for a scan.  But she didn't know what kind of scan.  Maybe a CT scan.  And then she started talking about them maybe using diamox for the scan.  They had done that in one of the pre-op tests.  And I kept trying to tell her that he can't have diamox unless he is premedicated with Benadryl and prednisone because he allergic to sulfa drugs and it has a similar chemical structure to sulfa.  And then she thought I was saying that diamox is a type of allergy medicine.  And then mom confused diamox with the xenon he had to inhale for another test and started talking about that.  So then the nurse thought that it was the same thing as Mucomyst and I kept trying to explain that it wasn't.  Luckily I have experience with both of those drugs.  It's never a good sign when you have a better idea of what the hell is going on than the nurse.  And I love nurses.  I do.  They have very important jobs.  But some are better than others and the fact is that if a nurse had the same training as a doctor did they would be called doctors.

Eventually the charge nurse came by to do his evening report and could probably tell from the look on my face that I was near tears from exhaustion, worry, fear, relief, excitement, frustration, anger, and probably any other adjective you could think of.  When we finally left at about 10 p.m. it seemed that things were going to be worked out.  I told dad that, as horrible as he felt, he had to try to stay semi-aware and that if anybody did or wanted to do anything that caused him concern to demand that they call me.  He grabbed my jacket and told me to get it together and go to medical school.  I told him I had tried.  He said to keep trying and reaching and not to sell myself short.  Sometimes I don't think he realizes how hard that is to do.  And then he told me to make sure I let mom talk (to the medical folks) and not to dominate conversations so much.  I'll chock that up to the pain and medicine.  He knows I have his back.

Mom and I reluctantly got in the car and went back to the hotel.  "Should we take turns getting showers?" she asked.  "It's either that or shower together," I answered.  We both laughed.  We took (separate) showers and collapsed.  I didn't even brush my teeth or take my medicine.  Honestly, I'm not sure if he had demanded a phone call be made that I would have even heard it ring.

It was a long, long, long day.

More later.

Love,
Rocketgirl

Day 9 - Surgery - Part 2

Hi everyone,

Wonderful news!  Dad has done very well with his surgery.  We got a call from the head surgeon at about 4:30 p.m. our time (it's 5:40 p.m. now) and they said they were closing and warming his body back up and that everything had gone very well.  The blood flow to the affected area of his brain has already increased 10x and will only continue to get better.  They predicted that it would be another hour to finish up, but he was was wheeled out to ICU at about 5:15 p.m.  We got to see him for just a minute and he looked pretty good, all things considered.  He was coming out of anesthesia and no longer had a breathing tube.  They asked for about 45 minutes to get him settled in, etc. and then we will be granted a short visit - so in about 15 minutes we will get to see him.  The attending anesthesiologist, who is just the sweetest man I have ever met, stopped by and talked to us for a few minutes and said that it went wonderfully.  So great to hear!

I will try to post more later.

Love,
Rocketgirl

Day 9 - Surgery - Part 1

Hi everyone,

Today started very early for us, at 4 a.m. to be exact!  Thankfully we had packed most of our gear last night, so it was really only a matter of getting dressed and out the door.  I think dad shaved too, for good measure. 

We got to the hospital at 5:15 per our instructions and went to the surgical check-in area on the second floor.  It was already quite busy.  Some people were wrapped in sleeping bags or blankets and looked as though they might have been there all night.

While we waited we reviewed some paperwork.  I have to say that Stanford is pretty amazing.  They give you a pamphlet with surgery day guidelines which reviews all of the steps they take to prevent anything from going wrong.  And it's not in a way that makes the reader feel like a peon, it's in a way that makes you feel as though they really care about you and your outcome.  My senior project for the honors program at UAH was about some legislation designed to regulate the number of hours that fellows and residents (doctors that have graduated medical school, but who are still in training) are allowed to work.  There are rules in place, but lots of times they aren't followed.  The legislation, which ultimately didn't pass, would have cut funding for teaching hospitals that failed to comply with the rules.  Anyhow, recent reports by the World Health Organization have recommended in addition to further curtailing hours, that checklists be used in all phases of hospital care to prevent error.  And low and behold, here was Stanford printing out their checklists!  For their patients to review!  Truly amazing.  All hospitals tell you that you have rights and responsibilities as a patient, but here they are telling you exactly what should happen so that you know beforehand that if at any step someobody forgets to ask you what part of your body they are operating on or what you are allergic to, that you should speak up.  I had a whole conversation abou this later on with an operating room tech.  Everyone here is so passionate about what they do. 

Eventually somebody came to take dad back to the pre-op area to change and get settled in.  When mom and I were allowed to rejoin dad a phone frenzy had started.  Everyone was calling or texting to wish him good luck one more time.  He loved that.  He also got a call about inpsecting a house which he had to turn down of coursse.  He didn't love that.  It's the third house he has had to turn down since we got here.  It was about 6 a.m. by then and we waited and waited for anesthesia to come.  Then somebody from the doctor's team came by and said that there had been an emergency case that morning and we would be delayed for a little bit.  Now in my mind a little bit means maybe 30 minutes.  But then another person came by and said that hopefully they would be ready at 10:30 or 11 a.m.  Ouch.  It's not that my mom or I minded waiting at all, but you can imagine what that is like for a patient who has been dreading this day since we got here.  They get you all hyped up and ready to go and then...you wait.  Dad took a nap and mom and I got coffee and took care of a few things.

One of the things we did was attend the "So you're loved one is having surgery today..." talk in the surgery waiting room.  Does it sound like I'm making it up?  Because I'm not.  Stanford has stations which cheerful workers in matching suits all over the hospital.  They can help you with anything you might need, and if they can't, well, they will find someone who can.  And the waiting room is no different.  After you check-in your patient you must check-in yourself.  There is a very nice lady who works up there and her job is to make sure that you are up-to-date and informed on your patient's progress and that you are taking care of yourself.  They have a monitoring system identical to the one in the cath lab and you can use your patient's ID number to track where they are in their surgery.  They also have coffee, computers, and free wi-fi.  She told us a lot about guest services, such as art therapy and therapy pets, which is available for not only patients but their family as well.  I might have to take them up on that.  I really miss Winnie.

Eventually at about 10:00 a.m. a nice young (cute) Indian doctor came in.  He's a third year anesthesia resident and after running through the checklist started dad's IV.  They had to use his hand, which I know he hates.  But at least the doctor numbed it.  The the attending anesthesiologist came in.  He was relly nice and really funny.  I can't quite put my finger on who he reminds me of.  Maybe those muppet guys - Statler and Waldorf.  He talked to mom and dad about the procedure while I chatted it up with the other doctor.  He asked me if I was a med student or a practicing physician.  I told him no and I don't play one on TV either.  He was really enocuraging and said I should reapply again.

Finally it was time for dad to go and we asked the attending to take a photo and he blinded me with the camera.  "Why are you laughing so hard?" he asked.  "Because I wanted a group photo!" I answered.  So mom and I kind of huddle around the bed and and we're still laughing.  "I don't know, Tom," says the attending.  "I would be worried if I was having surgery and my family was smiling and laughing like this."  And then we all laughed even harder.  So, Mr. Attending Anesthesiologist, thanks for making a tough morning a little easier.






After dad was taken to the O.R., mom and I checked out with the waiting room lady, and headed down to the cafeteria where there is a little bit more room.  We got grilled cheese sandwhiches and tomato soup.  Which I promptly spilled on my white tee.  As if I didn't already look rough today.  At least it was yummy.  Mom went back to grab some cookies while I was talking to dad's friend Pete (Hi Pete!) and came back yelling about something.  It turns out dad's surgeon is in the cafeteria - about 1 p.m. our time.  That means they haven't actually started the surgery part yet - which is about 2 1/2 or 3 hours long.  There is a lot, a lot, a lot of prep work with this operation.

In the meanwhile there is a French folk music concert going on in the Bing Atrium.  Have I mentioned how much I love this place?  I have a short video clip of it, but I can't seem to get it to upload.  Sigh.

Oh, mom just got back from the waiting area.  They started the actual operation part at 12:11 p.m. But the head honcho was in the cafeteria at 1 p.m.  So we're still guessing as to what that means.  Eh, the system isn't perfect and the counting is hard.  We'll probably head upstairs soon because as soon as he is done with his part of the surgery, the revascularization, he will come out and talk to us.

Talk to you guys later.

Love,
Rocketgirl

Tuesday, November 9, 2010

Day 8 - Part 2

Hi everyone,

We did head out to Muir Woods after the hospital today.  Stanford isn't in San Francisco - it's in Menlo Park, about 40 miles south of San Francisco and closer to San Jose.  Muir Woods is about 10 miles north of San Francisco in the Golden Gate National Recreation Area.  I say all of that because when we left Menlo Park it was sunny and when we arrived at Muir Woods it was cloudy, colder, and drizzling.  Not the best weather, but hey, we're troopers.  We parked, paid our admission, and went to...the gift shop!  Haha, just for a minute though.  We did the basic loop that dad and I had done on Saturday.  With the time change it was getting dark quickly and dad was getting cold and tired.  I took a bunch of pictures, but with the weather and being in a hurry not many of them were good.  I also shot a short video because I hoped it would do something of such beauty more justice and I want to be able to remember it forever.  I'll try to add it later.

Here is a photo of mom and dad standing on the path in a redwood grove.  Dad is 5'8 and a redwood can grow to be over 300 feet tall!

Like I said before, Muir Beach is only three miles away from the woods and you can drive or hike there.  Dad and I kind of wanted to drive down there for a minute, just to say we had seen it, but all of those hairpin turns down the mountain to the parks scare mom to death and she didn't wan't to be driving around there in the dark.  It was just as well given the unrelenting weather.

We talked to David on the drive back and were glad to hear that his big engineering test went pretty well today.  He says things are okay at home.  Overseeing grandma care is a stressor for him, but he and Nicole seem to be managing.  Mom boarded Hedwig, Oscar, and Winnie at the vet.  So that just leaves Arthur at the house.  Hedwig and Oscar are sort of a pair so it made sense to send both of them.  Hedwig hates it but Oscar is really laid back.  Winnie starts crying in the car as soon as you reach a certain intersection near the vet's office and will have to be pried off of you, but she usually adapts after a bit.  Arthur did okay at the vet the first time we boarded him, when we had only had him a couple of months, but after he really became attached to us leaving him was much harder.  He'll flip his bed and hide under it hissing, biting, and scratching anybody who comes near.  Last time we left him they didn't take very good care of him because he was so difficult and he ended up sick.  So, we left him with David and Nicole.  David said that Arthur has moved in under the couch in the family room, which is what he usually does when he is sick, and only comes out when they are home.  He's been an upset baby.  Poor thing.

On our way back into San Francisco we made an executive decision to stop at Buckeye Roadhouse for dinner.  We didn't know anything about it except that when we had passed it after going to Muir Woods the first time it had been packed.  We've been trying to eat and do things that are free or cheap since the total treatment and travel expenses are probably going to be astronomical, so this was a treat.  First of all, the place is gorgeous.  Lots of dark woods and leather, a large stone fireplace, and decorated for fall.  Dad had said he wanted a nice sit down meal where he could relax last Saturday when we went to get mom and that didn't work out.  So I'm glad he was able to have something nice on the night before surgery.  He ordered ribs which came with maple mashed sweet potatoes and coleslaw.  Mom and crab cakes.  I had a crab cake sandwich with garlic fries (healthy, I know!)  Then we had coffee and ordered one dessert to share - S'more Pie.  It's supposed to be the local favorite and it was featured on "The Best Thing I Ever Ate" on Food Network.  The waitress said that Tyler Florence picked it and that he eats there all the time.  So that's a pretty good endorsement.  And it is good.  Everything, right down to the hamburger buns, are homemade.  Was the pie the best thing I ever ate?  Well, no, it wasn't.  So if you go there maybe you should try the baked lemon pudding with blueberry sauce.  That's our waitresses favorite dessert.  It turns out that the restaurant is also a bit of a historical landmark.  It opened in 1937 along with the Golden Gate Bridge and some of the decor and building materials are remnants of the original Golden Gate Bridge.  Pretty darn cool.  So if you are ever in the area check them out.  You won't regret it.  We had a lot of calls from friends and family while we ate.  I know dad appreciated them, but it probably also made the impending surgery more "real."

He was stressed and tired as we drove home and made a wrong turn.  We ended up crossing the bridge three times and the southbound toll is $6.  We tried to get out of paying it the second time and they said they were going to bill the rental car company.  Whatever.  We have bigger problems right now.  Dad barely made it home driving he was so tired.  I probably should have insisted on taking the wheel.  Bob says that dad will likely feel significantly better and more energized - even before he leaves the hospital.  I can't imagine what it would be like to wake up with complete blood flow to your brain after having it constricted for a long time.  More oxygen, more glucose, more everything.

Mom and I dropped dad off at the hotel and ran over to CVS to get a contact case for me.  I just can't wear them for days on end.  It's too hard on my eyes.  We also picked up a little chess and checkers set.  Dad and I are going to play chess in the hospital.  I need to learn so I get a fancy "Wizards Chess" set like his.

Well, I'm the only one left up and it's about 11:30 pm California time.  We have to get up at 4 am and be at the hospital at 5:15 am.  They changed our time.  I've got our stuff packed and ready so getting out should be fairly easy.  Remember that surgery is at 7:30 am our time and should be done by 2:30 pm.  I'll likely be posting real time updates on Facebook and blogging when I can.  I don't think he will mind if I take the computer to the hospital again.

I guess I better get showered and hit the sack.  Talk to you all tomorrow.

Love,

Rocketgirl

Day 8 - Part 1

Hi everyone,

It will be impossible for me to get the blog caught up in time for surgery, so I'm going to pick up with today and add other entries in later and pre-date them.  Surgery is scheduled for tomorrow, November 10, 2010 at 7:30 am.  Our hospital check-in time is 5:30 am.
______________________________________________________________
Today is the eighth day of our trip.  In some ways it feels it like it has been much longer.  Perhaps that is because when you go on a vacation you're having so much fun that you are constantly counting how many days you have left.  That certainly isn't the case here.  In fact, our hospital days have been so long and our nights so short that it all sort of runs together.  This isn't to say that we haven't had any fun, because we have.  We've also met a lot of nice people.  And we've learned a lot!  Not just in terms of moyamoya, but about California too.

We got up early this morning, got ready for the day, and went downstairs to breakfast for our usual oatmeal.  It's not the instant kind, it's the plain kind that they have to cook up and you ladle into your bowl.  They have these tiny little brown sugar packets and boxes of raisins to decorate it with.  Mom and I bought some dried cherries and cranberries to add in as well.  If I were to say something that we've found comfort in it might be the oatmeal.  Sure, they have other stuff, but we always get the oatmeal.  It's the only thing that stays the same from day-to-day.  Well that and our awesome team.  Sandy the research coordinator has been a huge blessing and I love cutting up with Bob, the program director,

After a quick trip back to the room to brush teeth, we left for our 8:30 am appointment in the neurodiagnostic area of the hospital.  A psychologist came and got mom and dad for a brief interview after which dad had about four hours of cognitive testing.  He says it wasn't too bad, lots of questions and brain teasers.  They want to get an idea of whether or not the reduction in blood flow to the left side of his brain has disrupted his thinking.  It's interesting because weeks ago they called and he had to tell them about his highest level of education, etc.  I guess this was so they could cater the testing to what his mental abilities should be.  After surgery and at followup appointments we'll do this again to measure any changes.  They also want to know if it has caused any personality changes and mom has had to fill out lots of paperwork about this.

Anyways, mom and I sat in the cafeteria on the first floor while dad was busy.  I worked on the blog and she worked on stuff for school.  On our way down we stopped by neurology to say hi.  They have a TV that continuously plays a DVD lecture by our surgeon about the moyamoya surgery.  I'm trying to get a copy or some video to share with you.  In the meantime Bob gave me a really nice book that has all of the information. We grabbed a quick lunch here when dad was done and now the two of them have gone down the hall to the lab so that dad can do an extra blood draw for research purposes.  That was nice of him.  Last week alone he had three IVs and another blood draw.  That's a lot of (big) needles.

When they come back we're going to pack up and probably drive to Muir Woods again.  Dad really wants mom to see it and he wants to see it with her.  He says it is almost a spiritual experience.  I have to agree.  There is a trail you can hike that leads to Muir beach - it's about three miles.  I think we might do that as he wants to get some exercise in before tomorrow.  We might try to eat dinner at Fisherman's Wharf.  I guess it will depend on the time and stuff.

As surgery time gets closer it's definitely a mix of thoughts and emotions.  On one hand our doctor here does surgery a couple of times a week.  This is his everyday.  On the other hand, when he's doing the surgery on someone you love it is different.  I think we're all trying to be upbeat and avoid that frantic feeling.  I know dad is nervous.  He was telling mom after the testing this morning that the psychologist offered to prescribe something to help him sleep tonight and also said that if he needed to talk he could call her.  He was trying not to cry.  I could tell.

I'll add more to this and edit later.

Friday, November 5, 2010

Dad's diagnosis

Hi everyone,

Sorry I continue to be slow with updating the blog.  As many of you know dad and I have been in California since Tuesday and are in the pre-op testing phase of his treatment.  Mom will be flying out to join us tomorrow and surgery is scheduled for next Wednesday.  Unfortunately we've been meeting ourselves coming and going since we got here and so my time and computer access is very limited and I can't post from my phone.  I promise I only have a few more back entries and we will be caught up.  Until then I have real time updates on Facebook

I know a lot of people wonder what exactly happened to have an otherwise healthy man flying across the country for brain surgery.

It was about 10 p.m. on the night of Monday, August the 23rd and I was sitting in my room desperately trying to figure out how to start my sweater for the recent Spud & Chloe knitalong.  I was already frustrated and mom started yelling, "Sarah!"  I rolled my eyes and was about to answer when she started again, "Sarah!"  Now I was just annoyed because that's something grandma does...calling someone's name repeatedly without letting them answer.  "SARAH!  There's something wrong with your dad!" 
So I go running out from my room and dad is stretched out on the floor of the upstairs hallway.  He's trying to talk but it's coming out as gibberish.  His right arm isn't working.  Pretty much all of the classic stroke symptoms.  It took a minute for my supposed pre-med brain to kick into gear and by then mom had already given him four baby aspirin.  We should have called 911 and if you are ever in this situation you should call 911.  So we called our family doctor instead, only he doesn't answer pages after 10 p.m.  So I called his cell phone which he once called me from and so I saved the number.  I probably shouldn't have done that, but I was desperate.  So if you're following the blog Dr. Showers, erm, sorry about that.  Dad was acting funny.  And by funny, I really mean funny.  Engineers aren't exactly stand up comedians, but he was cracking jokes like Chevy Chase in the Christmas Vacation movie.  He was laughing and had both of us laughing.  When I couldn't reach the doctor I called Brian and got some advice via Facebook from a friend who is a nurse.  While the E.R. would have been the best option, we all agreed that he would make it 'till morning.

Mom had dad at Dr. Showers' office as soon as she got off work Tuesday afternoon. 
He thought it sounded like a TIA, or transient ischemic attack, commonly called a "mini-stroke."  Unlike major strokes, the symptoms resolve very quickly.  After that things happened pretty quickly.  We found out that with his insurance there is 3 day waiting period for the MRA and MRI he needed - unless the patient is in the E.R.  Fail.  So Dr. Showers made some calls and pulled some strings and got him in that afternoon.  And then we waited.  The tests showed some problems so they ordered a CT scan for Wednesday.  We were supposed to get the results the same day or Thursday, even though our doctor doesn't work on Thursdays.  Of course, nobody called.  So we called and called and called and couldn't get any straight answers.  I don't care if you have no new, bad news, good news, whatever.  If you say you're going to call, if you are supposed to call, then CALL!  Eventually the nurse of a different doctor in the practice called us and said that there weren't any problems in any of the scans and not to worry about it.  My mom was like, "Um, no," and explained the situation.  The nurse said she had been told to say that and apologized.  Everyone has good intentions, but medicine is far from perfect.

Friday came around and we did finally get to talk to somebody from our doctor's staff.  I told mom she should have yelled at them, or something.  That was the second time in six months that we have been in this situation. I tore a muscle in my leg last May and ended up with cellulitis and they were worried I had a blood clot too and sent me for an ultrasound.  I was supposed to hear the same day, also a Wednesday, and ended up not hearing until Friday that I was going to be okay.  If you've never sat still for two days wondering if you were about to have a pulmonary embolism, well, it's not fun.  The tests showed that dad had approximately a 70% narrowing, or stenosis, of the left middle cerebral artery in his brain.  The initial report assumed that this was due to atherosclerotic buildup (plaque in the arteries usually caused by high cholesterol).  He has taken a daily baby aspirin as well as medicine for mild hypertension for years.  Immediately the baby aspirin was upped to an adult aspirin, he was put on a statin for his borderline high LDL "bad" cholesterol, and Plavix to thin his blood to prevent another stroke.  Dad was scheduled for an cerebral angiogram/arteriogram (they're the same thing) the next week.

Mom can't get off of work, so I went with dad for his arteriogram.  He was scared of course, but Uncle Pat said it wasn't too bad.  I was there before the procedure and that's when we met our diagnostic radiologist, Dr. Dana Tomalty.  He explained that in the procedure they essentially puncture the femoral artery in the groin and run a catheter which emits contrast dye for imaging up through the trunk of the body, through the vasculature of the heart, and into the brain.  During this time the patient is awake and must be able to follow commands such as "breathe" or "don't breathe" and many pictures are taken.  Once the procedure is completed steps must be taken to keep the femoral artery from bleeding out.  Huntsville Hospital uses a gun and titanium clip to seal the hole.  After that the patient must be prostrate for several hours before he can go home.  Dad did well with the procedure, although he felt that they had played down the amount of pain he would feel.  While he rested Dr. Tomalty stopped by and said that dad has great arteries with only maybe a tiny bit of atherosclerotic build up in one place.  However, the stenosis was as severe as expected.  Based on his experiences he believed that dad had moyamoya disease which was causing his artery to grow closed.  When somebody has atherosclerosis a stint can be placed in the artery to hold it open.  This doesn't work in moyamoya patients because the artery will still continue to grow closed.  The only real option is a bypass of sorts.  Dad rested some more as I rapidly Googled things on my phone.  We were allowed to leave the hospital by lunch time and we went to Little Tony's for pizza and then Books-a-Million.  After that he was feeling pretty bad and we went home.

For the rest of the week we spent a lot of time online reading about moyamoya disease.  Having the ability to research medical conditions yourself is both a blessing and a curse.  We've all seen those mystery diagnosis shows where the frustrated parent solves her child's misdiagnosed case herself through persistence and the Internet.  Similarly I can also tell you from my own shadowing experiences that anybody can put anything on the Internet and somebody somewhere will believe it.  So just be careful and try to stick with reputable resources, such as medical school websites or articles you can pull up through Google Scholar.

The next Tuesday afternoon mom, dad, and I went to Dr. Tomalty's office downtown to look at images from the procedure.  It was so cool.  He had four giant monitors in his office and could pull up identical pictures from both sides of the brain and compare them.  It was also a little humbling, because we could all see the problem in exquisite detail.  The one artery was almost closed and dad's collateral blood vessels were growing to try to make up for the loss of blood flow.  Once an artery completely closes and the collateral vessels take over, the patient is no longer a candidate for surgery to repair the problem.  Also, they might have major strokes and could die.  Dr. Tomalty said that there were a few places in the country where he could possibly be treated, such as Virginia and California.  Through our own research we had already learned that Stanford had the largest moyamoya program in the country, maybe in the world.  Dr. Tomalty had connections there so he offered to contact the Dr. Steinburg, the head of the program, and also to send all of dad's reports and scans.

Next we had to see a local neurologist.  So that Thursday mom, dad, and I went and met with Dr. Amit Arora.  Honestly, we weren't impressed.  He didn't seem prepared for the appointment at all and said he would have to review the scans and get back with us.  He also realized something I realized, the potential to study dad and Uncle Pat since the condition is presumed to be genetic and they are identical twins and thus have the same DNA.  He should have studied the scans beforehand.  It's not like its a couple of x-rays.  There were hundreds of images.  He said he would contact lots of people he knew to get information and opinions and would get back with us, but he never really did - although he did agree that it was likely moyamoya.  Mom was glad because she didn't want dad to be shipped here and there for research purposes when what he needed was to get better.  We decided to pursue Stanford on our own.

A week or two went by and we heard from Dr. Steinburg in California.  He reviewed everything Dr. Tomalty had sent and also agreed that it was moyamoya, said that he would be happy to have dad as a patient, and even suggested a specific surgery to correct the problem.  He also said that he saw some stenosis in the right cerebral artery, but not enough to treat right now.  Some people have two surgeries a week apart if both sides are affected.

It was a lot of information to take in in a very short time!  And as you can imagine it was only the beginning...

Love,

Rocketgirl

Thursday, November 4, 2010

Meet our family

Hi everyone,

Before I get too involved with writing about dad's treatment, I thought it might be helpful to give a little background information.  I know that we have lots of people checking the blog, but not everyone is familiar with our whole family.

So, I present to you our cast of characters.

Dad - The star of the blog. He is an identical twin who grew up in Florida and went to West Point (Beat Navy!) where he earned a degree in mechanical engineering.  After I was born he left the army for the reserves and pursued a career in aerospace engineering.  He also earned a masters degree in engineering from the University of Alabama in Huntsville, another masters from the Army War College, and is pursuing a third masters in space science with the University of North Dakota.  After retiring from the reserves as a Colonel, he opened his own business - Rocketman Home Inspections.  Dad like outdoors DIY stuff, bicycle riding, baseball, barbecue, and those sorts of things.  He has a great tenor voice, but I haven't been able to convince him to take up theatre (yet).  Dad says that after he "gets his head fixed" he wants to do something bold like start a company.

You can visit dad's business website at Rocketman Home Inspections.

Mom - Her real name is Diana.  Mom also grew up in Florida and went to Florida State University where she earned a degree in English and German.  She was a stay-at-home mom for most of my childhood and in recent years has taught ESL (English as a second language) at a local high school.  She lost her position in this year's job cuts because otherwise she would have become tenured. She was hired back through a contract company and now does runs the credit recovery computer lab at the same school.  I wish she didn't have to work, but somehow we manage.  I'm mom's best friend and we can finish each other's sentences.  We like to go to Bandito Burrito and on wild adventures I think up for us, like grape stomps.  Mom is an excellent toilet unclogger and saves all the pictures we draw for her on the paper tablecloths at Macaroni Grill. 

Sarah - Hey!  That's me!  I'm the eldest of the four kids and the only girl.  I lamented that for a long time until my brothers started dating.  I graduated from UAH in 2009 with a degree in French and minors in business and chemistry.  I've applied for medical school twice, but so far it just hasn't worked out.  Or maybe it did work out, because if I had been accepted either time I wouldn't be able to accompany dad to California.  Anyways, I am still trying to decide for sure what I want to be when I "grow up." I have an interesting assortment of hobbies and interests.  Like my dad I tend to start more projects than I finish and think that it's not a real peanut butter sandwich unless it has enough peanut butter on it to taste.
Brian - Oh, Beardly.  Well, technically he shaved off his beard last week so that nickname doesn't really work anymore.  I haven't decided if I want to call him Unbeardly now or just Brian.  I'm sure he would prefer the latter.  Brian is the second child and for awhile it was just the two of us and we would pretend to be twins.  Brian went to Birmingham Southern College to study classical guitar.  He's an excellent musician but eventually decided to go into medicine instead and changed his major to biochemistry.  He is a second year student at the University of Alabama School of Medicine.  Brian is very compassionate, gives great advice, and is a very good secret keeper.  He will be an excellent doctor and I'm excited to see which field he will choose. 

David - David is a senior at UAH who will be graduating this summer.  He's following in dad's footsteps and studying mechanical and aerospace engineering.  I think he is also considering a career in the ministry.  He is the third child and nowadays many people think that he and Brian are twins.  David has a heart of gold and will always go out of his way to help you.  He enjoys reading the kind of books they assign in literature classes, watching Friends on DVD, and theatre.  He has a four foot tall stuffed giraffe in his room named Nectar.  He likes to place it outside closed doors to scare people when they open them, which I find to be especially funny.  David is engaged to Nicole and they will be married on 9/10/11 at 12 p.m.  No seriously, that's really when their wedding is.

Benjamin - Ben will probably be annoyed that I wrote Benjamin.  He's the fourth and youngest child and to his dismay I still like to call him Benjie or Ben-jammin.  What can I say?  That's what big sisters do.  I can't believe that he will be 20 this year.  Ben, like his brothers, is as smart as a whip.  He's a sophomore at BSC and also wants to go into medicine. Right now he's suffering through the first organic chemistry course.  He likes working out, washing his fancy car, playing video games, and watching Top Gear on Netflix.  He's really strong and gives great hugs.  And underneath that muscly exterior Ben has a really tender heart.  Ben is dating Sydney, a girl he met on the tennis team in high school.

Grandma - Grandma Doris moved in with us ten years ago after Papa died.  She has a lot of health problems and most things are difficult for her to do.  Sometimes it is really hard to have her live with us, but in the end it all works out.  I try to be patient, but I don't always do a good job.  Grandma has lot of interesting stories to tell.  She grew up in Germany during World War II.

Nicole - Nicole is David's fiance.  She's from Miami and is studying physics at UAH.  Nicole spent last summer studying abroad and doing research in Panama.  She graduates this December and I'm pretty sure that if you met her on the street she could tell you how many more days, hours, and even minutes are left until she gets her diploma.  She is a cheerleader and also rows for the crew team.  Nicole likes giraffes and names all of her possessions, for example Ivan her iPod.  Her favorite kind of cake is Funfetti and she is a self-proclaimed checkers champion.

Hedwig - Hedwig or "Wiggy" is Ben's grey kitty. She's ten years old. She's a little skittish because once when she was little she was sleeping a pile of backpacks and Brian lept over it and yelled "Cowabunga!"  She was so startled that she took off running through the foyer, hit the French doors to the dining room, and knocked herself out.  Even so her favorite place to be is still perched on top of a backpack or on top of the dryer.  If you accidentally lock her in your room she will poop on your bed.  We've spent many an hour at the laundromat.

Oscar - Oscar is David's kitty.  He's nine years old. Nicole likes to call him OscarPod.  At 18 pounds he is a big boy that outweighs all of our other pets, even the dog!  Oscar is very devoted to David and waits for him outside of his bedroom every morning and will follow him around the house.  Oscar also likes water and sleeping in unoccupied bathtubs.  He will frequently lead us to his dish so that we can pet him while he eats.  If you ignore him he will bite your leg.

Winnie - Winnie is my dog but everyone dotes on her.  I got her as a puppy five years ago from a local no-kill shelter I was volunteering at.  She was the runt of her litter, but I thought she was the most beautiful one.  Her mom is half poodle and half Pomeranian.  We don't know what the dad was, but half of the puppies looked like miniature Shelties and the other half looked like Ewoks.  She looks like a Sheltie. Winnie and Oscar have nearly identical markings so sometimes we joke that we bought them as a matching pair from one of those ridiculous Christmas catalogs.  Winnie plays like a cat and thinks that Oscar is her mom.  She follows me everywhere and is patient when I dress her up and take pictures.
Arthur - Arthur is Ben's orange kitty.  My dad had said no more cats, but somehow Ben still got Arthur for Christmas three years ago.  He's bright orange and full of mischief.  He spends his days tormenting the other cats, but adores Winnie.  She's his surrogate mom and the only one he will share the fireplace with in the winter.  Sometimes they get wound up and chase each other around the house.  If Winnie plays like a cat, Arthur acts like a dog.  It's not uncommon to see him chewing one of her rawhides.  Whenever she goes out to potty he tries to go with her.  Arthur can sense the weak link and has adopted my dad as his favorite person.  He demands snuggle time every morning.  If he is being stubborn and you need to catch him, the secret is to go stand under the ceiling fan in family room and call him.  I guarantee you that within in a minute or two he will be stroking around your legs and you can pick him up and cuddle him.  We haven't figured this one out yet...
Fishies - I hope somebody remembers to feed them while dad and I are away.

Uncle Pat - Dad's twin.  He started having mini strokes and full strokes long before my dad but was never diagnosed as having moyamoya.  The doctors at Stanford are going to study his medical history and will hopefully learn from his case.  Uncle Pat is married and has two kids.

Aunt Janene - Dad's older sister.  We think she had a TIA (mini stroke) last year and she is in the process of being worked up where she lives in Florida.  Aunt Janene is married and has four kids and four grandkids.

Thanks for reading! 

Love,

Rocketgirl

Monday, November 1, 2010

Welcome family and friends!

Dear family and friends,

Thank you for visiting our blog!  Here you will find up-to-date information about dad as we embark on the journey from Alabama to California for brain surgery to repair the damage caused by moyamoya disease.

I would have liked to start this blog earlier, but as you can imagine things have been very hectic here!  Over the next day or so I will stop by and add background information whenever possible.

I've also enabled multiple authors on this blog so you might occasionally see updates from my mom, dad, or brothers.  This has, and will continue to be, a family affair.

Love,

Rocketgirl