More Than Conquerors - My Moyamoya Journey

Some people have been curious about my scars so I am posting here.  As a patient at Stanford, the largest Moyaymoya Center in the US, I am blessed to have access to one of the best and most experienced Moyamoya surgeons in the world. Dr. Steinberg completed over 180 of these surgeries last year alone and has been treating Moyamoya surgically since the 1990s.  The difference in my surgical experience from 2012 to now was dramatic. In 2012, my surgery was scheduled to take 6 hours...it ended up taking 8.  I was conscious but had no memory of anything until the next morning. I woke up in ICU still pretty out of it and after trying to eat and get up on my own (2 things required to get out of ICU) I ended up throwing up. I was in the hospital for 3 days post op and had a a big line of staples in my head. Fast forward 7 years. My surgery predicted to take 6 hours ended up taking a little over 4. I was not only awake, but ate dinner and talked story with Bobby & Sara...

Hi everyone! Apologies for the lack of updates! Bobby and I flew home on Tuesday the 15th. We were up early for a 7:30am flight which worked out perfectly because we got home around 10:30 am, had time to grab Zippy's and then take a long nap! Then we surprised the boys by picking them up at school. I think that was the best medicine I could have asked for! The next day, I accompanied Bobby on morning drop offs, went for coffee with him to start our day and then hung out at home. After school, I went with dad to pick up the boys and even cooked an easy dinner for all of us! I'm not too great at gauging my energy and ended up pooped out on the couch! Don't worry.... I was tired but otherwise totally fine. Praise God, it seems like headaches and other symptoms are fading away! Dad took over bath time and Bobby came home in time to put the boys to bed.  I saw my cardiologist on Thursday and got a good report from him. He said my heart seems to be doing well and ...

Oh my goodness everyone, I am so sorry for neglecting the blog! I've been RESTING up and healing this past week.  A quick update:  On Tuesday I had my post-op check up and MRI.  Everything looks excellent and I was able to wash my hair!  Bobby and I also took a SHORT trip to Trader Joe's for some snacks on Wednesday and were able to have brunch at a small cafe this morning.  I also got the results of my neuropsych work up (pre-surgery) and thankfully the restricted blood flow did not affect my cognitive functioning at all!  My blood pressure continues to get more steady and I am weaned off almost all the post-surgery meds; I have just one more to wean off of and I will be back to just 2 pills a day (which I will take for the rest of my life)! Finally, the stitches will come out first thing Monday morning and we get to come home on Tuesday!  Clean Hair! Wow....God is good isn't He?  And through all of this He has been teaching me a few th...

Before and after.... I wanted to get out of the house and instead pushed it a little too far. Half way home, I couldn't get the words to come out. It resolved in a few minutes followed bu numbness in my fingers and face and heaviness in my legs. We called Stanford and they told us to come in just in case (the neurosurgery resident was not available). Right before my language disappeared  The ER was super busy but we got seen immediately. A CT and EEG at the ER ruled out stroke and heart problems.... So it's just my brain rebooting. The plan was to get me hydrated and send me home. What should have been a simple IV to get me hydrated ended up taking over 3 hours because they IV was placed wrong. Multiple attempts helped briefly but were unsuccessful and when they finally got it started it ended up slipping and hurting...and I developed more edema. Bobby was NOT happy at all! Three hours to run a single bag of saline!  Finally after hours we got the doctor to agr...

Well... We are all settled back into the house we are staying at. Mom got to stay Wednesday and Thursday night and Sars spent the day today. It was a pretty chill day... Lots of baseball on TV and just hanging out. Mom did some shopping this morning and I got some walking in. My blood pressure has been higher than usual (and that's OK), but my heart rate has been pretty low and worrying. I woke up last night pretty swollen in the feet, hands and face... But it's getting better and probably my body shedding water from all the IV fluids. My cankles.... Eew!  I talked to Stanford and they  don't think it's an issue because I am non-symptomatic, but I'll need to keep monitoring for any problems. So far me speech continues to hold up and I'm feeling OK.  Dad also said they boys had a good night last night and are doing well. They are definitely missing us, but the support & love from everyone has made a huge difference! Our next door neighbors hav...

So, it was an uneventful night last night. Mostly just a few check ins from nursing staff. Dr. Steinberg's team did rounds during breakfast and have begun working on discharge orders. I should be out of here by noon. So far, I have taken all my meds and got unhooked from my machines. They will hopefully pull my last to lines in the next hour or so. I am sitting in a chair and Bobby & Mom will be here shortly. It was a late night and mom flew all day yesterday so we wanted to make sure everyone got rest! One of my docs, a medical student named Bobby, pulled the random staple in my forehead and the dressing. So now you can see my incision. They used nylon stitches instead of staples, but it still looks like an earthworm stuck my head! 🤣🤣 Lori came up with that description after my last surgery and it's totally true! Sorry for TMI.. but it looks ok!  Looking forward to getting out of here. My roommate is kind of grumpy and I am looking forward to some peace and qu...

Hi everyone! I'm back to blogging! Yesterday was pretty up and down in ICU. I felt pretty good but we just couldn't get my blood pressure where we wanted it. The ideal post bypass BP is in the 130s over 80-90.  As they weaned me off the IV meds to prepare to move out of ICU, mine kept dropping.... Sometimes under 100.  My awesome nurse Heather noticed that when that happened I would have some nausea and get super sleepy. So she kept in touch with the team and they put me back on the IV at a low dose. But as the day went on, the neuro team felt that I am OK at a low blood pressure and made the decision to look at symptoms rather than the numbers. Of course that wasn't easy for us to get on board with because we still have worries about language. Heather was cautious too and worked with us to wean off the meds at a pace we felt OK about. Seriously good nurses are the best part of the recovery process. She and Ilana (another nurse) took great care of me all day and I felt ...

Dana is doing well and she will spend the night in ICU, her nurse Biji was amazing and will be with her until 7am. Biji said Dana is doing good and that her goal tonight will be to keep Dana’s blood pressure high to help blood flow to her brain. Biji said it’s critical in the first 24 hours that they keep the blood pressure high. She will also wake up Dana every hour to ask her questions as protocol to be sure her responses are good. Then if Dana continues to progress tonight they will move her to a step down room tomorrow and most likely discharge her on Friday. Dr. Steinberg and his team stopped by to check on Dana and said she’s doing well. Dana was able to eat and was drinking plenty of fluids. Dana said that she feels much better this time than she felt in December 2012 when she had her first surgery.  That was so good to hear. Thank you all for your thoughts and prayers. Please continue to pray for her recovery. Good night. Bobby Dana’s left side

Dr. Steinberg called me (Bobby) at the waiting room at 6:10PM. He said that everything went very well. He said that she had very low blood flow but they finished and doubled her blood flow now. He said that his team will now finish everything up and she should be moved to ICU and she will be wheeled past me and Rob in the surgery waiting room in around 60-90 minutes. I can’t wait to see her!!! They will keep her in ICU tonight and see if they can move her into another room sometime tomorrow. Praise the Lord! 🙏🙏🙏🙏🙏 Thank you for all your continued prayers for a speedy recovery. Sister Sara and cousin Lauren will be coming to the hospital soon.

We were driving home from picking up Rob at the airport to get ready to head to Stanford when the hospital called. Dr. Steinberg had finished his first surgery early and they wanted me to come in early. We happened to be near the hospital and turned around and headed in immediately. They checked us in right away and got me set up in pre-op. Bobby & Rob are back with me now. We talked to mom & dad, Sara & Lori. They marked my right ear, which is a precaution to make sure they do the correct side. And I unbraided the section of hair in the front so they will have access to the surgical site. I was hoping to have more braided up because it gets pretty gooped up but they asked me to leave a good bit loose. Dad prayed with us and we feel ready for this surgery. Mahalo for your prayers and support. Please pray for Bobby & my family as they wait for the surgery to be completed. It will be a long day! Love you guys!