THE LONG AND WINDING ROAD

I am so very happy to report that we are at the end of our journey and that the long and winding road led us to where Shira is suppose to have her surgery. We met with Dr Gary Tie at VCU today and we all felt extremely comfortable with him.  He has scheduled Shira's TC for Thursday Oct 4.  He has connected her with a hematologist and pediatrician.  She will be in the ICU the first night post surgery and will have to lay flat for 3 days.  He then will want to do a 2 week post op appointment, so Shira and I will be here for a few more weeks.  Mike will fly home tomorrow and come back on Oct 3.

Shira has an MRI tomorrow afternoon and if she doesn't have any Dr appointments on Friday,  I am thinking of driving  to Colonial Williamsburg and stay overnight.   The Portner Family, who Shira has adopted as her East Coast Family, may drive to  Richmond Sat evening to hang out with us.  Shira and the Portner boys will go to the science museum on Sunday.

If anyone has suggestions on fun things to do in Virginia, let us know.

Hugs
Barbara

ON THE ROAD AGAIN

So we packed up, yet again and drove to our new hotel in Richmond VA.  It is a very nice hotel, with better mirrors and lighting then the other hotels we have been in.  I only mention this as I am now realizing the need to buy a tweezer for some unsightly facial hairs.  (TM411?)

So here's the latest update:

 I spoke with the head nurse at the orthopedic surgeons's office that Dr Sandhu referred Shira to in San Diego for scoliosis surgery.  The nurse said that the Dr does have EDS experience but she stated  that they always refer scoliosis patients who have a Tethered Cord (such as Shira) to a neurosurgeon to have TC release before considering scoliosis surgery as releasing the TC  can helps the scoliosis. (Exactly what I thought, but what do I know, I am only a mom)

I am cautiously hopeful about our appointment with Dr Tye tomorrow.

Our wonderful friend Monica sent me this quote by Randy Pausch this morning and while I was reading it, the lyrics on the radio were "Don't ever look back"

The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.”

Thank you all for your love, encouragement and help as we have faced our share of brick walls!

hugs

HOT POTATO HOT POTATO

So after a wonderful week-end of visiting with family and wonderful new family (the Portner family) we go to our much anticipated Dr appointment this morning.  Well Dr Sandhu, believes that Shira's real medical challenge causing her new issues is her scoliosis and that the tethered cord is 2ndary to the scoliosis.  Dr Sandhu feels that Shira needs scoliosis surgery as her scoliosis is pulling on the spinal cord and that doing scoliosis surgery may relieve the tethered cord.  He believes this is the surgery that should  be done first and is referring us to Dr Akbarnia in San Diego.  He feels doing the TC surgery may not be necessary after the scoliosis surgery.  He believes that Dr Akbarnia will do the surgery even though 2 top orthopedic surgeons in Southern CA already told us Shira's curve isn't bad enough to warrant surgery and they didn't believe it was her scoliosis causing the issue.

I spoke with Dr Henderson about this and of course he disagrees and believes that the scoliosis can improve once the tethered cord is released.  He is frustrated as he truly believes this is not only the right surgery but also the least invasive procedure that can give Shira the best possible outcome.

I am feeling like Shira has become a  hot potato, being passed from Dr to Dr. and it is extremely frustrating as I refuse to allow Shira to be in a wheelchair any longer then she has to be.  Shira is ready to throw in the towel and wants to go home.

Through a facebook group for EDS and related surgery's, I have gotten the name of a Pediatric Neurosurgeon in Richmond, VA, Dr Gary Tye  I called his office and pleaded our case and not only were they willing to work Shira in to see Dr Tye this Wednesday, the nurse I spoke with knew all about EDS and the complicated diagnostic issues.  For me,  Dr  Tye will be our Tie breaker (no pun intended) So for now, all we can do is wait and oh course, change hotels yet again.

Shira isn't happy with me so I think I will put myself in a time out downstairs in the hotel bar!

hugs

Monday Monday

So this morning we went to Georgetown University Hospital and dropped off Shira's MRI's and the pre/post surgery info we have.  We met briefly with Jay, Dr Sandhu's assistant, who we also gave a bag of Lindt chocolate so she would like us and to keep me from eating them. She said we would hear back by the end of the day.  About 15 minutes ago, Jay called to say that Dr Sandhu wanted to see Shira Monday morning.  He would fit her in even though he is totally booked.  So we will be there at 8:45 Monday morning and hopefully get some answers.  (As I type this the song that is playing on the computer is "Keep Holding On" hmm, I think there is a message in that for me.)

We are making the best of our Waiting in Maryland, and have made some wonderful new friends  Our new friends are also patients of Dr Henderson and are here from, Boston,  NY and San Diego for appointments with Dr Henderson.  We had a wonderful evening last night hanging our together and it was especially great for Shira to connect with more kids and adults who have some of the same medical challenges as Shira.

Tomorrow we will move hotels, our 3rd in one week.  We are going to stay in Georgetown, which seems like a cool area to walk around and is closer to the hospital where Shira will hopefully have surgery.

Tomorrow evening we will get together with Mike's cousin David and his daughter Sarah, who is a year older then Shira and who we adore.   On Sunday we will get together with Paul Portner, the son of one of Dad's best friends/collegues from Memphis.  I remember Paul as a kid and have been a part of his marriage and the birth of his 2 sons through Dr Portner and his wife Mary's pictures every time we would see them.  We are all looking forward to being with them.

Even though we have not even been here a week, we have so many people on Team Shira.  Sue Penn, a dear friend and Director if Education has put us in touch with amazing Drs at Johns Hopkins so we have  yet another Plan B if we need.  She also connected us with friends from a sister synagogue here, and I get regular phone calls to see if we need anything.  It is wonderful to have so much support when we are so far from home.

hugs and have a wonderful week-end

Waiting Is the Hardest Part

So Dr Henderson has sent everything over to Dr Sandhu's office and now we are waiting to hear from his office on when he can see Shira.  We are keeping everything crossed that he will be able to see her tomorrow or Friday at the latest and that the surgery can be scheduled for early next week.  In the meantime we are going to try to enjoy some of sights of the city and try to see friends and family in the area. We are reconnecting with old friends and making new ones while here.

Am so hoping that I will have some definite news to post soon.  Thank you all for your support.

hugs
Barbara

CH CH CHANGES

So Doctors Hospital said that they would have to change the charter of the hospital to be able to treat Shira since she is only 13, which isn't going to happen any time soon, so we are moving to plan B.  Dr Henderson spoke with a Neurosurgeon Dr.Sandhu who is with Georgetown University Hospital and he has agreed to take Shira as a patient. We feel comfortable with this as Dr.Sandhu trained under Dr Henderson and  another mom, who's 11 year old was recently operated on by Dr Sandhu, raved about him. Tomorrow, I will start the phone calls to his office to make sure the process is expedited.

While Dr Henderson was my first pick, the hospitals' he uses are small and perhaps with all of Shira's possible complications it will be for the best to be at a large teaching hospital . As always, we know Shira wil be doing the majority of the teaching to all those medical residents and Drs, as she is 1 in a million.

As Shira's Auntie Monica said," let's keep everything crossed that Shira gets onto an OR table soon "

Shira and I are keeping the faith, eating chocolate and catching up on trash TV.

hugs
Barbara

No Where To Go

Just spoke with Dr Henderson and he said that Shady Grove Hospital won't let him operate on Shira as they are not wanting to allow surgeries on Ehlers Danlos Patients. Too many possible complications.   So he is going to go back to the first Hospital, Doctor's Community Hospital, which said he couldn't operate on Shira as their age requirement is 14 and she is 6 months too young, and he will ask for them to call a Board of Directors Meeting to make an exception for her. (how was that for a run on sentence?)  So right now, we have no where to go, so we will continue to hope and pray that Dr Henderson is able to work his magic and get the powers to be at Doctor's Community Hospital to waive their age requirement for Shira.  If I weren't living my life right now, I wouldn't believe these things actually happen.  Thank goodness we found the Lindt Chocolate store today as I am eating all the chocolates we bought to give the nurses!!!  

hugs

Barbara

Waiting is the Hardest Part and now we are Waiting even longer

The surgery will not happen tomorrow.  We are on hold again.  Along with Shira's other medical challenges, she also has a very rare bleeding disorder.  While we feel prepared for this (surgical instructions from hematologist at CHLA) Dr Henderson needs a hematologist that is on staff at Shady Grove Hospital to see Shira  The one's he knows and has tried to contact are Jewish and not available today as it is our New Year.  He is hoping to get Shira in to see a Hematologist tomorrow and is hoping to be able to do the surgery on Wednesday.  And to think, I thought all we needed was a good PPO and there wouldn't be any challenges.  Who knew.

So for now we are on hold. If anyone knows a hematologist connected to Shady Grove Hospital in Rockville Maryland, please call me!

hugs and forever hopeful

No Good Deed Goes Unpunished

Hello Everyone,
This is Jill, Barb's friend writing on her behalf.  I just got off the phone with her. They are on their way to the airport and asked if I could post the latest update of the departure morning.

In trying to make this trip as enjoyable as possible, and by enjoyable we of course are not talking about sipping champagne and chomping on macadamia nuts on the way to Hawaii, but rather using miles to upgrade to First Class so that Shira could be as comfortable as possible (flights are extremely tough on her) on the way to her surgery,  keep luggage and check-in hassles to a minimum. They did everything in their power to carefully orchestrate the things that were in their control. 

They woke up this morning to a cancelled flight.

Let me repeat that, because the first time Barb said it to me, I was not comprehending the statistical unlikelihood of what she said.

Their flight was cancelled.

We can all fill in the blank of what must have ensued around 6a.m. this morning just after learning of this minor detail.  At one point the arilines had tried to split them up and put Mike on a different flight through Miami. Anyway, they are now all flying together on a different airline than the original one. They depart at 10:02 this morning. Seat assignments, (no longer first class, they are lucky if they can even sit together) still to be dealt with at LAX.

In theater, it is said that a dress rehearsal riddled with mishaps is a good sign that the show itself will be flawless.  I feel confident that the surgery and post op healing - the real show, is going to be a smashing success. Can't wait until we can give everyone the standing ovation they earned. 

Like Barb always says - Hugs

Leaving on a Jet Plane

We are on our way to Maryland for Shira to have surgery that will hopefully give her back her strength and feeling in her legs, take away her back pain , improve her scoliosis and hopefully improve the sensation in her lower legs and feet.

The surgery Shira will have on Tuesday morning Sept 18  is to release her tethered (“tied down”) spinal cord. In my layperson’s understanding, your spinal cord is attached to the bottom of your spinal column by a piece of connective tissue called the filum terminale. This tissue acts like a rubber band, keeping the spinal cord in proper tension as the body grows in childhood. In patients with Ehlers Danlos this piece of tissue often malfunctions, creating too much tension on the cord. This can cause many neurological symptoms, including back pain, leg pain and weakness, numbness, tingling, etc. So, our wonderful neurosurgeon, Dr. Henderson will open Shira’s spinal column through the sacral spine (the lowest part of her back), make about a 3” incision, cut out some bone to expose the cord, open the dura (the tissue that surrounds the spinal fluid and spinal cord), and snip the filum terminale thereby relieving the tension on her spinal cord.  Shira will have the surgery at  Shady Grove Hospital.  She was originally suppose to have the surgery at a different hospital but on Thursday evening, Dr Henderson called to tell us that the other hospital said Shira was too young to have a surgery on her spine at their hospital.  Luckily for us, Dr Henderson, who is beyond amazing, made arrangements for her to be operated on at  Shady Grove Hospital which recently did away with their Pediatric ICU , so Dr Henderson has stopped doing surgeries there.  He doesn't feel that Shira will need to be in the ICU and convinced the powers to be to allow him to operate on her.  He called us this afternoon, Saturday, to tell us to get on the plane and he will make it all work out.

I will try to keep this blog updated as we are truly blessed with so many caring friends and family who are holding such good thoughts and praying for Shira's health to improve.  If love could heal, Shira would be so very healthy.  Shira is also doing a blog and her blog address is