(1^st Blog Post by “Bert & I” on Behalf of Hospitalised Ali)

Ali started her day (a beautiful, high pressure spring day here in Kunming) by participating in a meeting held in Dr. Zhu Hui’s office at the Tongren Hospital.  Attending, in addition to Dr. Zhu Hui and Ali, were chief neurosurgeon Dr. Liu, Ali’s mother Uschi, her brother Mattias, her father Ralph, and two other members of the neurosurgery team and the chief nurse.  Also in attendance by teleconference from Indianapolis was Indiana University Professor Dr. Xiao-Ming Xu, who has played a mission-critical role even well before Ali’s arrival in Kunming.

The hour and a half meeting covered a range of 11 written questions from Ali relating to preparations for surgery as well as post-surgery ICU care.

The quality of patient care here at Kunming Tongren Hospital can only be described as “world-class” … exceeding Ali’s prior experience anywhere else she has been treated since her injury.

In addition to expressing her appreciation to more than a dozen individual members of the local Tongren team, Ali has also asked that we acknowledge three external academic advisors who have played critical roles:  to Dr. Wutian Wu, Professor of Neuroscience at Hong Kong University, who first brought Dr. Zhu Hui to the attention of international clinicians and academics;  to Dr. Wise Young of Rutgers University, who brought her father to the Kunming PLA (military) hospital in October 2011 to meet Drs. Zhu and Liu; and to Dr. Xiao-Ming Xu of Indiana University and Chairman of the Science Advisory Board of the Sabrina Cohen Foundation.

Ali and members of her immediate family have carefully evaluated the risks of the very complex neurosurgery she will undergo tomorrow (see her post of April 24^th for details) and have concluded that the potential advantages outweigh the admittedly considerable risks.

Ali believes that Dr. Liu has more experience with this surgery than any other surgeon who has come to the attention of her family, having performed more than 1,000 spinal cord surgeries during his career and this specific surgery many hundreds of times.  She also has the deepest expressible confidence in Kunming team leader Dr. Zhu Hui, with whom Ali has developed a very close relationship.

At the end of the meeting, Dr. Zhu reiterated the risks involved and spelled out four possible outcomes:

• Post-surgery condition significantly better, with relief from increasingly severe neuropathic pain and enhanced prospects of motor function recovery resulting from untethering her spinal cord.

• Post-surgery condition unchanged

• Post-surgery condition worse.

• A mortal outcome.

After confirming that Ali and her family clearly understood these risks, Dr. Zhu asked Ali to sign off on a document acknowledging and accepting a range of potential complications and risks, a summary of which is posted here below.

(CLICK IMAGE TO ENLARGE)

Ali reviewed this document and agreed to execute it, and with her brother Mattias assisting in the signing “ceremony” Ali executed the documents herself … photos of which follow below.

In preparation for tomorrow’s 5-7 hour surgery, scheduled to commence at 8 a.m., Ali was admitted to hospital this evening (Monday 13^th May) for pre-surgery prep.  She was initially caught off-guard by a “fine print” detail when her nursing team shaved off half her hair from her neck up to the crown of her head and then braided the remaining golden locks into a Princess Leah style and secured the braids to the what remains of her hair on the top of her head!   Bert & I have photos of Princess Ali in her new hairdo but have not yet been able to secure publication rights.

Tomorrow we will bring further news via an intra-day report after Ali is in ICU.  The entire surgery will be filmed, as is the custom here in Kunming for post-surgery clinical evaluation, an excerpt of which will be published as soon as possible on China Quad Diaries.

As I prepare for surgery on Tuesday, I am getting ready for an important pre-surgery meeting on Monday morning with Dr. Zhu, Dr. Liu, my Dad, my Mom, and my brother, Mattias, who flew in a few days ago from Atlanta to be with me for the surgery.

I’m preparing a list of questions for my surgical team, and crazy-as-it-sounds I keep coming back to what I think is going to be a challenge, perhaps because of my recent experience being handled here for the MRI machine.

Since the plan is to access my spinal cord from behind, I keep trying to work out how they are going to turn me over onto my stomach in the operating room. I know, this is a very funny thing to obsess about, but, since I’m twice the size of most Chinese, I’m just trying to picture how they are going to physically flip me over!   Of all things to be nervous about …  🙂

I have also been informed that the co-leads of my neurosurgical team, Drs. Liu and Zhu,  will actually be staying with me overnight at the hospital for the first 48 hours after surgery!   “Speechless” hardly does justice to my reaction on hearing of their plans.  I doubt very much there are too many neurosurgeons in the United States who would take such close interest in a patient during the most critical post-surgical hours. I feel honored … and safe!

This complex surgery will take place on Tuesday morning and will last approximately 5 1/2 hours. (See my posts of April 20^th and 24^th for details on the surgery.)

I will then be transferred to the ICU for 48 hours, and then, if all goes well, I’ll transfer  up to the Spinal Cord Injury Rehabilitation 7^th floor, where I will spend 3 to 4 days in a private hospital room with two beds, so someone (like Mom!) can sleep beside me.

So if all goes to plan, after about a week I will be discharged and recuperate further at my nearby apartment. I have been told that I have only two weeks to recover, and then I am expected to start back in the Walking Programme!   Seems there’s no slacking in China, especially when the team here is led by career officers of the People’s Liberation Army Medical Corps.

Perhaps another way of looking at this is that my team here have a lot of confidence in what they are doing, and they don’t appear to harbor any reservations that they’ll get it right for me in the operating room.  Then I am expected to pull the strongest oar possible, as decades of experience have repeatedly confirmed to them that taking up vigorous rehab at the earliest possible date leads to better outcomes.

On a light side note, when my brother Mattias arrived from Atlanta via Beijing at 3 a.m. Saturday morning, he brought with him three large suitcases with supplies and personal items for me.  One key piece of “equipment” he brought over is a very small audio speaker that I can plug into my Galaxy Android phone.  This little guy is round (slightly larger than a golf ball) and covered in blue foam, so it sort of dangles from the handset like a pom-pom atop a ski cap.  Here’s what I have in mind:

I had been reflecting on the first time I was in ICU in Miami when I first broke my neck, and I distinctly remember the sound of the heart rate monitor beeping constantly all day and throughout the night.  So, I thought this time I could improve upon my ICU experience by plugging this tiny loudspeaker into my phone and putting the handset and speaker combo together on my belly in the ICU. This way I can control round-the-clock music and drown out the hospital machinery. Sometimes such a seemingly small thing can make a difference in an ICU, to which I have unfortunately been confined multiple times in recent years.

One big difference this time is that nobody is going to speak English. I’m pretty sure my Chinese is proficient enough to ask for painkillers!  Seriously though, I have been studying my hospital vocabulary for the last week, because we will not have a translator in the middle of the night in the ICU.  This is either going to be really comical or something a lot less funny … I’ll have to get back to you on that one!

Meanwhile, since I will be laid up for about two weeks, I have appointed two surrogates to post my blog for me.  They go by the pen names of “Bert” and “I” (a.k.a. my brother Mattias and my Dad) … as in  Bert and I.   For a chuckle, see http://www.islandportpress.com/bertandi/

Or listen to:   http://www.youtube.com/watch?v=t451Ruf4XDI

These guys will keep you up to date on how the surgery goes and how I am doing afterward.  I take no responsibility for embarrassing photos (such as Photoshop’d surgical pictures of aliens flying out of my neck) or any other crazy blog posts 🙂

Before I head to surgery I would like to thank all my friends and family for your incredible support over the last couple of years. I would not be here today without most of you.

Well, with that I will take my leave and turn it over “Bert and I” for the next few weeks.

Talk to you on the flipside!

With love,

Ali

Life has been pretty slow over the last week as I impatiently await my surgery. Unfortunately, the pain has gotten so severe that I can no longer leave my house anymore unless I have a little energy to go work out at the hospital in the mornings.  The cyst has grown larger (+30% in the past 18 weeks) —  which means it’s pressing further onto my spinal cord and has also started to impact my breathing.  I suppose I would describe it as not being able to get a full breath of air every time I breathe.  With that said, I do have one funny story I would like to share with you.

I was having so much trouble breathing yesterday that my neurosurgeon, Dr. Liu, made a house call and brought with him what I can only describe as a canvas pillowcase filled with oxygen.  I suppose the pillowcase was lined with some sort of plastic on the inside so the oxygen would not leak out.  I cannot help but thinking  how relieved I am that my Dad was not in China at the moment smoking a cigar next to me  🙂

This oxygen pillowcase holds about 1 to 2 hours of oxygen, and it can then be re-filled at the hospital to take it home again. I am pretty sure, due to the fact that oxygen is so flammable, that these pillowcases may be illegal in the United States.  My caregivers have been going back to the hospital every day to refill the pillowcase for me so I can breathe a little easier in the afternoons.

I suppose this oxygen pillowcase could be a popular new accessory in certain Chinese cities (thankfully not inclusing Kunming) as the air quality continues to deteriorate.  I can somehow imagine the Chinese lining up in the near future to get their pillows filled with oxygen after a bad dust storm, just as Americans wait in line to get their gas cans filled after a hurricane. 🙂