Sunday, October 19, 2008

Yesterday So Much Fun...

You guys may already know this but it just clicked with me yesterday, I'm still a little foggy with meds but coming back down to earth, that Auntie Diane has been loving posting updates on my recovery on her blog since I was released from the hospital. So check there if you haven't been doing so already when I don't have an update.

One more bit from yesterday that I wasn't able to post before I got too tired was the great morning I had with Auntie Diane and Mackenzie while Mom was out running errands. First of all, having Auntie Diane here has been a real gift. Auntie Diane beyond helping tremendously with my and Mackenzie's care, as well as, keeping Mom and I sane she is the "Pillow Queen." She can take an old hotel bed and a pile of pillows and make a comfortable adjustable bed, no joke. Without Auntie Diane I would not be able to sleep at all at night since the doctors do not want me laying flat right now. It also has been nice having a chance to visit with her so much again. Growing up in the Bay Area I would see her and Jen all the time when I was little. She is like anoher mother to me and Jen more like a sister than a cousin. Auntie Diane has been watching Mackenzie a lot while Mom takes care of me. It is fun to see Auntie Diane and Mackenzie get a chance to bond so much and watching them bond brings back warm memoroies of growing up and spending time with Jen and Auntie Diane.

Yesterday Auntie Diane, Mackenzie and I enjoyed some girlfriend time while Mom was at the laundry mat and running errands. Auntie Diane and I sat in a couple of chairs at the foot of the bed and visited while Mackenzie rolled around on the bed. Mackenzie decided to join the conversation sticking her tongue out and making fart noises. She and Auntie Diane started going back and forth. All of us laughing in between noises. I decided to try and join the fun as well, let's just say Auntie Diane was laughing. I don't think Mackenzie was sure what I was trying to do. After a little trial and error I managed to make a noise that was close without drooling all over myself too much. Mackenzie was never impressed by effort though Auntie Diane and I sure had a good laugh.

I hear Auntie Diane shuffling some cards. Hmm...maybe a game of cards is in order.

Saturday, October 18, 2008

Recovering in Palo Alto

I think it has been a few days since I last posted. I still don't seem to have any concept of time. I'm sorry to make so many people cry on my last post. I just had to to tell the story of Ery. With so many patients and liability I understand that they have to be so careful that they don't give the wrong thing to the the wrong person at the wrong time but, in Nebraska, when I had my previous surgery, they would let one person stay with you all the time. I wish they would still do that. I'm being very careful to not do any lifting and follow doctors orders so I do not get a CSF, cerebral spinal fluid leak and have to go back in the hospital as I had to to last time.

Here's a hospital story to make you laugh. When Steven and Rob came to see me that night that Steven walked with me in the hall, Steven began the visit with his usual, "Are you alright Mommy?" I told him I was feeling pretty good and then Julie, my RN came in with my meds. Steven turned to her and immediately said, "Your Dad's a loser." Rob and I were both shocked. Julie is a young spunky gal and she took it in stride as Rob scrambled to get to the root of this totally out of the blue comment. It didn't take long to find out that Steven had overheard Rob call some the the neurosurgeon residents losers whose bedside manner was not so great. Rob had also expressed displeasure with some elements of my care. Steven had seen the stethscope around Julie's neck and figured that one of the "loser doctors" Daddy had been talking about must be her Dad. Julie cracked up! We all had a good laugh. Rob has since talked to Steven that not all of Mommy's doctors are losers. Before Steven comes with me to any follow up appointments I am going to be sure he knows that all of Mommy's doctors are "heros and good guys." With a 3 1/2 year old around you can't let your guard down for a second.

It has been so energizing to stroke my daughter though it is difficult for me touch her since I cannot hold her and cannot bend my head down. I was happy to see Mackenzie had bonded so well to my Mom even though it was personally heartbreaking to watch her track my mother like she use to track me in a room though there isn't a more wonderful mother to step in for me then my own Mamacita.

Over the las few days Mackenzie and I have been reconnecting. I've learned that if I open my mouth really wide to smile at her she understands I am smiling and she smiles back at me. Mom picked me up a special pillow that with her assistance I can actually nurse Mackenzie a little. In the hospital they did not use the pump so I'm not sure how much milk I am producing now not that I was strong enough to handle the pumping in the hospital anyways. It is funny that I have found nursing Mackenzie to not be draining. I actually feel relaxed when nursing and I get to stroke Mackenzie and we share smiles. I haven't taken my valium for over a day now. Mackenzie now tracks me again and looks to nurse throughout the day. It hurts to use my face too much so I save up all my expressions for her. She and I both look forward to our nursing times. I am trying to nurse whenever I feel strong enough.

The toughest part now is missing my "guys." Today I was flipping channels and came across Transformers, so I called them to see if they were watching it. We watched it together a bit. Steven told me he has a surprise for me when I come home. I think he is trying to gve me incentives to get better. I told him that I cannot wait for the doctor to clear me to come home. I told him Mommy is doing everything the doctor has asked her to do so she will get better quickly.

My first appointment is Tuesday afternoon. I cannot remember with who. I think I have a few appointments that day. The hope is that I will be cleared to go to Sacramento. I've already been starting to make plans for Rob and Steven to come and see me there.

Keep up with all the positive thoughts and prayers! They are definitely working! Love you all especially you Rob.

Wednesday, October 15, 2008

Thank you, Thank you, Thank you!

Hello all, yes, I am blogging from the hotel room on Auntie Diane's computer. I just got finished catching up on what all happened this last week since the surgery. First, I want to thank all of you for your thoughts and prayers. I know God or whatever higher power you subscribe to answered each and every one of them. I know I had the very best team of doctors going in and feel truely blest with the tumor being completely removed, my carotid artery remaining intact, and Dr. Harsh feeling pretty optimisitc that I will not need neck stabilization.

Dr.Harsh, head neurosuregeon, came by ICU while the head collar was digging into my neck and told the nurses it could come off. He wanted me to wear a soft collar as a precautionary measure. He said that the tumor just pulled easily off the top two cervical vertebrae on the left side. The two vertebrae were worn from the tumor but they didn't have to cut them down further and he feels pretty confident there is enough there to keep my head steady. I am to wear the soft collar whenever I am out of bed. In bed I do not have to wear it.

I must say that having major surgery at a larger hospital like Stanford is like being at a cattlefeed lot. It took hours for things to be done that my doctor's requested especially if the paperwork wasn't just so. For example, I suffered with the hard head collar digging into my neck for hours because the written order from Dr. Harsh wasn't in the computer, and then it wasn't in there just right. It did not matter that the nurse had discussed it with him in my presecnce. If it wasn't in the computer then NO WAY. I did have my own private nurse in ICU who sat at a computer around the corner from my bed. I had no call switch because supposedly she would hear me. Uh, she never did even when, I threw the other half of the collar they had left on me. About an hour before I left ICU I was able to talk her into a call switch. I had to promise not to use it unless I tried to call her first verbally. I could go on here but, let's just say I felt lucky to survive ICU.

The main floor was just as busy and they had very restrictive visiting hours (11am-8pm). I was very weak and my head was pointed straight ahead. The TV was mounted too high on the wall for me to see. My food tray would come and the nurses would get the head of my bed all the way up, give me my meds, and then uncover my food for me. I was on a pureee/liquid diet. I felt like someone kicked me in the jaw. I guess the tumor resided behind my jaw and that my jaw was contorted for quite a while to remove all the tumor. I had to be very careful and still need to be careful not to aspirate my liquid food. I would struggle to feed myself after they were done with the meds. I would usually manage a bit or two of what I could reach before collapsing from exhaustion. The nurses couldn't hear my voice well and they had lots of patients so they would say, Ms. Wall it isn't time for your pain meds now, we just changed your position in bed, or something like that and walk out even though I just needed my one drink moved closer so I could reach it. Weak from surgery I did the best I could and prayed to live until my family came to visit.

The next morning my prayers were answered. Ery, one the nursing assistants, brought the trays for me and my roommate's. But this time, as I struggled to reach for anything to eat or drink I was met by his kind face. "Would you like me to feed you?" I said yes and started to cry. He couldn't see me cry in the low light of the morning but I thanked him profusely for helping me eat and told him he was the best nurse ever. He chuckled and said you just looked like you needed a hand. I don't think he will ever realize just how much that meant to me. My roommate had some issues and she kept getting out of bed without gettiing the nurses first. She was always getting tangled in her IV's. Her family got mad at Ery once and while I wanted to stick up for him I was too weak. I did tell my med nurse about the incident where I thought her family was going to complain since they raised their voices at Ery. She thanked me and told me Ery has been there forever and that my roommate was moved to a speical area for rogue patients. From the moment I met Ery on things started getting better. As I got stronger through eating, blood transfusions, and getting my family in their to fight for me too I started getting stronger and stronger. Having Rob by my side kissing my forehead each night before he left helped to keep me going.

Another highlight was when Steven came to visit me and we got to walk together in the halls holding hands. His touch was electric to me and gave me so much strength. We even danced a bit. He walked me in the halls and told everyone we passed about my "Ouchee" being removed from my head. He didn't just take care of me. There was a guy moving briskly with his IV and Steven told him to take it easy. The nurses and patients all fell in love with him. Everyone smiled on the the entire floor of the hospital that evening.

It was a little crazy coming to the hotel yesterday with me getting way off my med schedule. That was not pretty. But, last night was my first night without a major incidence of nausea (I think my pain meds were being given to me on an empty stomach in the hospital at night).

Today however I am just basking in the the love of my Mom, Aunt and baby girl, Mackenzie.

Saturday, October 11, 2008

Saturday's Post

Well, Erin is still getting better from a neurological perspective. She is getting more feeling back in her face and her smile seems to be straighting-up. Her blood count was low this morning. She is getting a two unit blood transfusions as I type. The hope is that she gets more energy to eat. Her counts this morning actually have her in the anemic range. She is also getting a follow-up MRI today. The talk of an early discharge is somewhat waning. I really couldn't be happier to hear that. She needs more time in the hospital if you ask me and her Mom. A likely scenario would be a mid-week release to the hotel room and then onto Sacramento. But we shall see. Hopefully, Deb can update you all this evening on how the transfusion went. I get the evening shift with Erin.

Erin was cheered up from a visit from my mom, dad, and sister this morning. It was good to see them. Thank you again for all of your prayers and good thoughts. Rob

Friday, October 10, 2008

An Update from Stanford


Rob Here, I just got back from Erin's room. I was fortunate enough to meet both the ENT team and the neurosurgeon team. Erin is progressively getting better. The doctors have taken her IV out and she is taking more nutrition from her mouth (soups and other soft foods). She is complaining that she is extremely tired. A blood transfusion was mentioned as a possibility to boast her blood counts. We'll find out more tomorrow. I was also fortunate enough to work twice with Erin and the physical therapist today. It was nice seeing her walk the hallway! There was talk of releasing her early next week. Erin mentioned something about going to Diane's in Sacramento. The medical team thought that was a good idea. Here is a shot of her sleeping this morning

Monday, October 6, 2008

In Palo Alto

Yesterday, we left Fortuna about 10 am. We had to stop by our friends', Bob and Karen Baker, house to pick up my Dad who flew in Saturday. We got to the motel about 6 pm.

Today has been a day of relaxation around the pool and enjoying each others company.

Here's Mackenzie laughing and playing with her Grammy.



After lunch it was warm enough to get into the pool so Steven and I put our suits on.

We all spent the entire afternoon out at the pool. Here's Mackenzie and Rob sitting in the shade.


With Rob and my parents standing by I decided to see if I could swim in the pool. First I doggie-paddled then I got brave and tried swimming under water. I wasn't sure how I would feel. I am timid doing anything too physical since my dizzy spells. I think my body has adjusted to losing my balance nerve on the left side pretty well now but, I occasionally still do get a little off balance. Also, with that tumor still in there I feel like I never know what else may suddenly become compromised.



As you can see from the video I did pretty well. I just had to not shake my head when I came out of the water because it would hurt my neck. Steven and I had a great time in the pool.

Steven prefers to "swim" on the stairs. It reminds my parents and I of when I was about his age.


I was able to coax Steven off of the stairs to swim with me. I promised I would not let go or let his head go under water.

Well, I have had my last full meal and my last blog post for a while. Tomorrow I am being admitted to the hospital at 10 am and am under orders to not eat or drink after midnight tonight. I will be having my embolization of the tumor and the balloon test on my carotid artery tomorrow. I'm going to eat and drink a little more and then hit the sack. Good night.

Saturday, October 4, 2008

LATE BREAKING NEWS

I talked with my Aunt Diane this morning, who will be down at Palo Alto with my parents, husband, and my kids during the surgery, and she volunteered to keep everyone informed on her blog on the day of surgery, that would be Wednesday Oct. 8th. She said that way friends and family that are not at Stanfrod that day can see and hear about what is going on. I have a link already from my blog to hers.

Down the left side of my blog page you will notice that there is a list of "Links to Friend's and Family's Blogs." Her blog is "Diane's World." If you haven't checked out her blog already you'll probably want to make it a part of your "blog-checking" routine. With gorgeous pictures, recipes, and inspiration she gives both Oprah and Martha Stewart a run for their money.

My Turn

Little Mackenzie and Daddy early AM prior to coffee!

This is my first time posting to this blog. We are all contributing as a team to keep you all informed. So, as the tone goes, BEEEEEEP, this is a test of the Erin Information Blog System this is only test. If this was an ordinary period in our life you would be instructed to watch for my wife's wonderful photography and blog entries. This concludes the test of the Erin Information Blog System.

From Debra

Who says you can't teach an old dog new tricks! Erin is tutoring me on "blogging" so I can update the blog (along with Rob) while she is recovering from surgery.


Here is Steven modeling his Halloween costume--recognize the team? He was sooooo excited when the costume arrived. Erin let him try it on to make sure it fit and then he "negotiated" some time to wear it. He loved the helmet and he and Grammy went out for some passes and scored a couple of touchdowns. Note: Grammy had to be a "bad guy" so I picked the Dallas Cowboys (sorry Cowboy fans) .

Since Wednesday, he's tried "negotiating" (which means he asks over and over) to wear the costume again. We explained that he needs to wait until Halloween so he's even tried to persuade us that it is Halloween!!!



Steven is into costumes. Since his debut as Sir Blackbird and Superman he has branched out and added Buzz Lightyear, Woody, Power Rangers and now his latest foray is into boots. We can't figure out if he's a cavalier or one of the Three Musketeers (contemporary style) :)




One of my very favorite things to do with Steven is read him stories. I love books and he will listen to story after story so I can read as much as I want!

Friday, October 3, 2008

Pre-Op at Stanford

We got to the hotel Monday evening about 7 o'clock since we got a late start. I was playing with Mackenzie and she actually sat for a few moments by herself on the bed. Of course I grabbed the camera and my Mom and I attempted to recreate the moment and capture it on film. Uh, you can imagine how that went.



Down at Stanford the weather was gorgeous. That was great since we not only had to meet with Dr. Jackler at the ENT clinic but, also with OR people in the main hospital. Wow, what a busy place. There were people around you most of the time with gurneys wheeling by with people on them. We left the organized chaos and stopped for a minute outside amongst the flowers. Here's a picture of my Mom and Mackenzie.


My pre-op appointment went fine. It started with the usual temperature and blood pressure check. Then, one of the resident doctors in the ENT clinic went over the procedure with me while making sure all the paperwork was in order. She's lucky I could read the doctors' writing better than she could. It must be all my experience reading student papers. They really should add a penmanship class to the doctors' inservice and relicensing program.

I met briefly with Dr. Jackler and his sidekick Dr. Monefared with several medical students shadowing them. Dr. Jackler pointed out a few things on my head to them. The most startling to me was when he took a close look at my old incision site as he was telling them that the team was going to reuse it. He said, "Hmm, this is going to be close. The facial nerve is likely really close by so we'll need to be very careful cutting through the skin and immediately begin testing tissue and looking for it." I think he noticed my eyes bugging out of my head. He reassured me that they will be going very slowly and doing everything possible to preserve the facial nerve though it is likely they will need to pry it out of the scar tissue or possibly off the tumor. Therefore I would experience temporary facial paralysis on my left side again. Even if they had to take the facial nerve he reminded me that they would not leave me with total paralysis on my left side.
I also asked about whether he and Dr. Harsh, the neurosurgeon, had reconciled their difference of opinion regarding the stomach tube and tracheotomy. Dr. Jackler stated his position as before that I would not likely need them since there would be no new nerve damage. He also added that he is the head surgeon and Dr. Harsh is an assisting surgeon so nothing happens unless he says so. I glanced at Dr. Monefared, to read how confident he was in this answer from Dr. Jackler, and he gave me the, I told you he's the boss look. I then nodded in acceptance. I also asked how far apart the surgeries would be if he decided the tumor needed to come out in two surgeries. He informed me they would be about 6 weeks apart to allow the dura around the brain to completely heal. I informed my Mom who was tentatively looking at going back to Iowa the second week in November. She calmly restated that she is out to help me as long as I need it and that she can change the date she flys home if needed. Boy am I lucky to have such a great Mom.

Then I went to the OR area for blood test, urine test, and chest x-ray. I was very impressed with the hospital gown I had to put on for my chest x-ray. It is actually flannel material. I asked the technician if this is the standard gown throughout the hospital and he said yes. Here it is...


After all my pre-op stuff was done we drove over to Sacramento to visit with my Uncle David and Auntie Diane and stay the night to break the drive up a bit. We enjoyed visiting with them.

Here's Auntie Diane and my Mom, Debra.

Snacks, including Auntie Diane's homemade wine jelly on top of cream cheese. All of which were delicious and went well with the VJB wine.

Me and Scruffy having dinner.

It was hard to leave but, Uncle David and Auntie Diane are going to be coming over to Palo Alto when I have my surgery next week. It will be great having them there for support.

We made pretty good time on the way home and didn't stop much. But, we did stop at Confusion Hill because someone pooped her pants. Here's a hint it wasn't Mom or I. Here's a picture of Mackenzie and I with Mackenzie all fresh and clean and ready to drive the rest of the way home.