Finally at the hotel!

Hi all,
Emily was finally discharged! Yipee! Steve took Marni to the airport so that she can get home to her own family who must miss her a lot. We appreciate all she has done for us during this time. She helped get things organized, comforted us, and was there to lend a hand for whatever we needed. Emily and I are at the hotel and just had dinner. The hotel provides dinner and tonight it was cheese ravioli, salad and bread sticks. Mine came with a glass of red wine, all for no charge! I am savoring the wine. Emily is both watching TV and reading her Judy Blume book. She looks very relaxed and happy to be out of the hospital! The hotel room is very nice and it is like a mini apartment. It should be quite comfortable for Emily and Steve all next week while they hang out. I am flying home Sunday morning to be with Adam and to relieve my parents who have been wonderful during this whole process. Staying with Adam and making sure he eats and gets to and from band camp everyday. It was just one less thing for Steve and I to worry about. My parents are going on a well deserved Alaskan cruise and leaving Sunday. I will get home Sunday just in time for them to leave and for me to return to work on Monday morning. My bosses and coworkers have been extremely wonderful and I want to let them know how much I appreciate all their support.
Steve's parents left this morning and helped to keep our mind off things while Emily was in surgery. For that I am thankful. It was a long day! Everyone's calls, texts, emails, facebook posts and prayers were much appreciated! It is so nice to know that so many people care about our family, and even friends of our friends who have never met either us or Emily. Just amazing!
I will fly back up to S.F. on Thursday night so that I can be at Emily's Dr. appt next Friday. We will meet with the nurse who will turn on and program the device. After the appt., the three of us will drive home. So, nothing much going on at this time. Emily just needs to relax and rest and heal. I will continue to update, here and there, if things come up that are worth sharing. Thanks again to all who are following Emily's journey. Once the stimulator is turned on, we will have a lot more to report, and it may take some time to see some improvement, but I will certainly keep everyone updated. As for me, I am off to take a nice, long, hot shower!!! (Not sure when Emily will post something, but hopefully soon!).
Love Marci

Dr. Starr visits

Hi again,
Dr. Starr came to see Emily about an hour ago. He removed her head wrap and checked the sutures on her head. He had only put the head wrap on because he didn't cut too much hair and the bandages weren't sticking to her head. However, when he removed the wrap, the bandages appeared to be sticking well, so he did not need to wrap her head up again. I asked if it would be easier for her to keep it clean if he re-wrapped it, but he prefers not to. The wrap makes her head hot and sweaty and thus is more likely to breed infection. So, she has her hair up in a ponytail, and she cannot wash it, or touch it, until we see the nurse next Friday.
The time period in which a stroke is a risk factor has passed, so that is good news. The most important thing is to keep the sutures dry and clean. No showering, but she will be able to have a very shallow bath when we get to the hotel.
We are waiting for the discharge orders. We will most likely be here for a few more hours, which is okay, because Emily is asleep and the hotel room isn't ready yet (we are switching hotels to a one bedroom suite, with separate bedroom and sitting area and kitchen, with stove, dishwasher and fridge). The hotel offers both breakfast and dinner, so this will help with convenience and money. Thanks again for following Emily's progress. As soon as she feels up to it, she can start blogging herself. For now, I will continue to keep you updated.
Love, Marci

Almost Out..

Emily seemed to have a better night last night. Moved into her own room, she slept more, as did Marci, and she seemed more awake this morning, according to Marci. She ran a slight fever, which the Dr. said was normal after surgery and this morning it is gone. So now we wait...

Hopefully she will be discharged today. Steve went this morning to the Homewood Suites and made his reservation a sure thing, upgrading so Emily could have her own room and a bath instead of just a shower. We had been staying at the Radisson, but the Homewood Suites offers rooms with full kitchens which will be great for making meals with Emily in mind. It will be great to lay in bed and recover and relax over the weekend and beginning of the week while eating homemade mac and cheese or cup of noodles. It just makes sense.

So this morning, we packed up and checked out, and will run to the store to make sure Emily has some foods for tonight. Then we are off to the hospital to wait for the Dr. to say she is good as new :).

As for me, I am flying home tonight. I have not been home to play with my own kids and see my own hubby in what seems like forever. I am toying with the idea, if Emily is up to it, of driving back up later next week with the kids and staying overnight. We can take Emily out to dinner. My kids have been asking about her every day - especially Dillon. But we will see how it goes.

Meanwhile, I want to thank everyone for their kind words and encouraging voices online. I especially want to thank the parents (Steve and Marci's and my own) for everything they have done. Whether here or not, they have each played a critical part of making sure Emily is better in no time at all. I cannot think of friends I have ever had in my lifetime that are quite like Steve and Marci. They are truly amazing, and their children are amazing. I am blessed.

Love to all,

Marni

Good morning from Marci & Emily!

Good morning! Yes, Marci is feeling very refreshed. Finally a good night's sleep. Emily and I both slept through the night and until 9:00am - in a hospital. Unheard of. I know I feel much better and can offer better care to Emily now that I am rested. Emily had a fever last night, then went up a little. The nurse waited to give her Tylenol so we could see if it went up more. That would give an idea if she had an infection. But, thank goodness, the fever didn't go up, and seemed to be a normal part of post surgery. Emily took some Tylenol and the fever came down. Emily had a few strawberries for breakfast and a few more bites of the McFlurry that her father bought her last night. Oreo. Is there another kind? She is lucky I didn't eat it myself it looked so good. She still has eggs and a croissant sitting here plus cocoa puffs, but she doesn't seem interested. We are much too busy passing the time with the Price is Right. She loves this show! Some things are so timeless, even with Drew Carey and no Bob Barker!
We went for a short little walk earlier in the wheelchair and Emily wanted me to take her to the Technology room where teens can go and hang out. Unfortunately, it was closed until later. We manuvered our way back to the room (thank goodness Emily was with me as I was completely lost). She certainly got her good sense of direction from Steve, so that is good). I say "manuvered" because interns and med students fill the hallways here so it is hard to get thru. It is a nice environment seeing all the young students though, so it is okay.
So, just waiting for Dr. Starr and will update soon.

My Own Room!!

Emily has finally been moved to a regular room on the pediatric floor! Yahh Emily!! She was out of bed in the wheelchair and Steve wheeled her outside for some non-hospital air, and down the hall to see rooms with no tubes and bed pans :). She is now resting comfortably in her new room watching TV.

She is recovering well and should be released tomorrow sometime. From there she will be staying at the Homewood Suites in nearby Brisbane, California (10 minutes from the hospital) until next week when she has her first check up. At that check up the Dr. will program the devices she has put in and hopefully it will begin to make the dystonia a thing of the past.

While it is not a cure (there is no known cure), this surgery should help Emily lead a normal life...and we all know that includes the big party Karen promised her...food, cake, Mr. Pibb (her fav) chicken nuggets (Is there any other kind of chicken?) and of course - dancing :)

Love Marni

Update

I wanted to update everyone and let you all know that Emily is doing very well. She has been up to go to the bathroom, and is requesting McDonalds for dinner :).

On a side note, there was a second DBS surgery (what Emily had) right after Emily's yesterday. It was for a 27 year old man named Ryan Stockdale. He and his family live in Idaho, and were once the recipients of Extreme Home Makeover. He had the same surgery with the same doctor and we have heard it went OK as well. I wanted to include his web site as we have made friends with this family and are each following each other. Please visit the web site...his story is incredible.

www.ryanstockdale.org

Back to Emily...she is doing very well, and I am excited that later today once she is in a regular room she will be able to update this blog herself. Thanks again to all who are following this, for everyone's words of encouragement, and prayers...

Love Marni

Wednesday

We are back at the hospital and Emily is doing very well. She is in ICU but they are moving her to a regular room as soon as they have one available. She had an MRI this morning, but it is routine, so not to worry. She ate Popsicles and drank juice last night and watched her favorite TV shows. 

The bandage on Emily's head was a question I got from some last night and I wanted to let everyone know it was to keep the hair (we all know she has a lot of thick hair) out of the way during surgery. The Dr. wanted to cut only as much hair as absolutely needed, so he wrapped the rest. It looks far worse than it is. 

As soon as she can, Emily will be back blogging. 

Love Marni