Day 4: Release from the recovery room

After a very successful 3rd night in the hospital, MoyaMoya Husband was cleared by his doctors for release on Saturday, 9/19/09! The USC vs. Washington game was on that day, and some of his friends flew in just time to watch the game with him at his apartment. The first non-hospital meal? As much pizza as everyone could stuff down them :).

NOTE: Standford medical center has an AWESOME housing assistance program for patients and family who need to stay near the hospital for treatment. Talk to your doctor about getting setup with the Assistance League of Los Altos - they help many families in need of long term, fully furnished a apartments.

Zipper Unveiled

So Day Two!!! He's doing so great surrounded by USC gifts he is in great spirits. His bandage came off and you can see his staples...he walked last night. Dr. Steinberg came and visited us at 10pm last night and told us we can leave Saturday - just four days in the hospital that is great news...he says Moyamoya husband looks amazing for just having surgery 2 days ago...He had part of his hair "dry shampooed" and styled by a nurse...I guess it beats the 80.00 cut and color at our local salon! Pictures below!

Recovery Pics - Post Op, Stanford

By end of day one out of surgery moyamoya husband has more swelling...it will get bigger tomorrow and then by day 4 should go down...all is good mri looks really good - more tests will monitor new blood flow and any potential stroke threat which is a side effect of the sugery (but low chance) all looks really good....another tube removed tonight! Yeah down to 3 tubes...

MoyaMoya Husband's First Post From The General Population...

Moyamoya husband's first post!!!!



Hello everyone! FINALLY I have been allowed communication with the outside world..the ICU nurses are very keen about issuing good feeling drugs ever 2 hours, but definitely not too cool with patients talking on cell phones, texting or tick-tacking at a computer.

So the big question I keep getting asked is: "How do you feel?" Well, amazing, I am NOT in much pain. My mild discomfort basically comes from the incision that the docs made on the left side of my head. By my estimate, I have about 10 staples in my head, and 3 little titanium plates to hold the bone together. Bionic brain! So it is all this internal and external hardware that requires Vicadine or Fentadol.

Aside from the normal passing of the “healing hours” I am told that my recovery has been going very, very well. Dr. Stienberg, my awesome brain surgeon, paid me a visit directly after my procedure yesterday. He said that the blood flow in my head BEFORE surgery had been a 1 out of 26 (which doesn’t sound that pleasing); but now, AFTER my surgery, the blood flow has increased to 26 of 30 (which sounds much, much more pleasing). I am waiting for my X-ray vision to kick in, but no dice just yet…

Ok, that’s all for now – its time for another cat nap for dinner.

Pictures! Day One

Day Two ICU

MoyaMoya Husband is looking spry today! First day he was able to talk and remember details this morning he is looking amazing and they have already removed his catheter and some other tube, swelling is relatively good and he just ate his first clear liquids:) We are waiting to be transported to a normal room all is looking great.

Here are some pictures of MoyaMoya husband tubes and all!

Game Day: Moyamoya Surgery

Today is surgery day...moyamoya husband and I spent a lot of time praying...and we both feel very confident going into the surgery. He was admited at 5:15 am - no liquids or food since 12 midnight...he was called into the back room at 7:00 where anesthiseologists (spelling) and nurses drew blood inserted iv...they could not find a vein so finally put it in his hand vein - his spirits were good - they marked his left side where they will drill three holes open his skull and then begin the bypass...its sureal but today strength comes through our lord and savior Jesus Christ - so we are doing well...I wait now until at least 1pm....with another update.

- MoyaMoya Wife

The beginning - tests leading up to the big day

This is moyamoya husband! 29 years old...his left side of his brain has moyamoya not his right...he's lopsided :) Today moyamoya husband and moyamoya wife had the last of 3 days of extensive testings:

Cerebral Angio - All day procedure
MRI
CT Scans
Scans of legs, head

Lots of waiting for me...

Background On The MoyaMoya Disease

Not a doctor...to learn more about the moyamoya disease click here:

http://stanfordhospital.org/clinicsmedServices/COE/neuro/moyamoyaDisease/

What To Expect When Your Expecting MoyaMoya

My husband collapsed 2 months before our wedding and was diagnosed with MoyaMoya. I quickly learned about this rare disease and researched doctors from around the nation, who could best treat his condition. So now 5 months later we are treating his MoyaMoya with a surgical procedure known as an STA-MCA bypass from the renowned Dr. Gary Steinberg at Stanford Medical Center. We embark on our surgical journey to treat the condition tomorrow morning. I thought a blog on my day to day activities would archive in internet space - and help other wives, mothers, friends, sisters, and fathers understand a day by day account of MoyaMoya treatment and what they can expect.