COMING HOME

Our last couple of days were good.  Friday morning was spent having follow up appointments with Dr Teasley, a wonderful neurologist, who spent over an hour and ½ with us and then seeing Dr Tye and his RN JoAnn.  Shira looks good from a surgical stand point, but both Drs agree that Shira’s internal systems are  pretty “screwed up”  They used much more politically correct medical terms, but that is what they meant.

We then changed rental cars, as it would be too easy to keep the same car, but if we were changing hotels and states, we thought we should change cars also.  We checked out, and drove to Maryland.  Most of the drive was quite beautiful, with the trees starting to change colors, but then we experienced, hail, heavy rains and DC traffic.  All was okay until we pulled up to our hotel, and Shira puked.  Luckily, she is quite skilled at puking in the car, and was able to grab a bag before I realized she was getting sick.  I guess the oreo cookie milkshake, onion rings and left over pasta for lunch weren’t the best combination on top of the pain meds and a 3 hour drive. (live and learn)

We met friends from Boston who were in town for a medical consult with Dr Henderson for dinner.   We stayed up until 11:00 talking and laughing.  Today, we somehow stuffed all our stuff into one big suitcase, returned the rental car and then had lunch with Ali Lee.  It was her husband who was on our flight 5 weeks ago and gave Mike his seat so we could sit together. We saw her at the airport when we arrived, so seeing her today with Shira on this side of surgery was wonderful.   She gave us a mini tour of DC and dropped us at the airport.

The flight home was hard on Shira as we hit quite a bit of turbulence.  And, I wasn’t the best at remembering the timing of pills and which pills I had given her. Dr Tye had wanted us to keep the pain meds on board for the day of travel.  Neither of us could remember if I had handed her a pain pill before we boarded the flight, so I decided to err on the side of better to have more meds, then less and gave her one once we got on the plane. (Pradeep, if you are reading this, I am sorry my pain management skills are so poor)  

Mike was at the airport to meet us, our flight was an hour late, but it was wonderful to get off the plane with Shira walking.  

There is definitely truth to the saying ‘There is no place like home” We came home to a bouquet of balloons, flowers throughout the house and some of our favorite foods and treats!  It is also good to be home where Shira will now be eating healthier meals,  There were mornings in hotel where her plate of morning pills and sweet tarts were breakfast.  I am not sure if Sweet Tarts is what  they meant when they said one should eat a variety of colorful foods. 

While this wasn’t the surgical trip we had planned, and I would have rather been home 3 weeks ago, I truly feel we are much richer for the journey we ended up on.

We have so many more wonderful people in our lives that add so much flavor and color.  On the plane, Shira and I were remembering  all of the highlights of our trip and each highlight involved our new found friends, some of whom truly feel like family.  We are so much richer having them in our lives. Had her original surgery worked out, we wouldn't have had our lives touched by any of them.

Another positive is that Dr Tye is much more open to doing surgery on occult tethered cord in EDS kids which is so important since Dr Henderson isn’t able to at this time.  I am excited to know that other kids like Shira will now have an easier time finding a skilled and knowledgeable neurosurgeon because of our journey. 

Again, thank you for your cards, get well gifts, prayers and kindness over the past few weeks. It meant so much to us.

I have to go, as I am hosting a pot luck tomorrow for about 30 people from Southern California who all have postural orthostatic tachycardia syndrome.  Crazy, I know, but that's how we roll!

hugs

Our last dinner with Roman and Eden and Shira taught them the joy of cigarettes. (bubblegum)

Shira and Dr Tye
His favorite answer when asked about Shira. is
"With Shira, all bets are off" 

Shira and Jodi Friday night

Breakfast of Champions, a plate of pills (and Sweet Tarts to follow)

Shira with Ali saying good bye at the airport

Shira on flight home.

Thank you for traveling with us!

HERO

Sorry I haven't posted for a few days.  Have been busy doing laundry, changing hotels, sorting all of Shira's new and old meds, enjoying sleeping in a real bed, and sending Mike back to California.

So Shira is truly my hero.  She has just been through hell and back, is still experiencing crazy pain, and she has a smile on her face and looks great.   Shira will have 2 follow up Dr appointments this Friday  and as long as everything goes ok, we will drive on Friday afternoon to Maryland where we will stay for one night.  Sitting for any length of time is hard for Shira, so we will make the 2-3 hour drive on Friday as we are booked on a flight out of DC on Saturday evening.  Shira has been trying really hard not to take the pain meds, but will definitely need to for the long flight home. Shira is walking more and more each day, which is wonderful.  The Physical Therapist said it will be at least 12 weeks before Shira will gain her strength back.

The Doctor told Shira "No BLT" bending, lifting or twisting, which is now her excuse for not picking clothes up off the floor or reaching to get her drink etc.  I am hoping to enlist some of her friends to help out when we are home, as I may need a brief break from being at her beck and call for the past 5 weeks!

I will add some pictures since I am so proud that I have figured out how to upload photos from my phone to my computer.  It truly is the little things in life!

Hugs

Shira's Incision Site
The first neurosurgeon told Shira that she would barely know  he had made an incision on her back,
Guess this Neurosurgeon who did the surgery didn't get the memo to make it a small incision.

A Party in the PICU

The 4 year old in the bed had the same surgery as Shira a week later.  He also has EDS and had an occult tethered cord so we became best friends 

He is sedated and on oxygen, but we wanted him to know that his friends, Shira, Roman and Eden had visited.  Happy to report, he went home after 4 days and is doing well.

Shira being discharged!!

Shira arriving at the Hotel Jefferson after 10 days in the hospital!

Shira and Dad at Brunch at Can Can restaurant the Sunday after discharge from hospital

FREE BIRD

Just got discharged!  Wonderful to get to hotel.  Will update tomorrow!

NIGHT MOVES

So happy to report that last night Shira got moved out of PICU to the regular Pediatric Unit!  We are so  happy as this means we are closer to busting out of here.  I am hoping for a discharge tomorrow, but we will see how today goes.  Once we get out, we have to figure out how many days we need to stay before Shira is able to get fly home as we have a 2 1/2 hour drive to the airport, a 6 hour flight and then another hour drive home from LAX.  While she is really trying to not take the pain meds, I will load her up on them for the trip home.  The neurologist would like to see Shira next week, but probably can't fit her in until Friday, so we will have to figure out what to do.  I have include some photos from the past few days.  Again thank you for all your support and love

Hugs 

 

Shira sitting up warming IV sites  Nurse Becky coming in

Shira's arm from IVs

              

Shira's matty hair post surgery

first detangling with nurse Rachel

2nd detangling with Nurse Erica

3rd detangling with nurse Naomi

IT'S BEEN A HARDS DAYS NIGHT

It has been a rough couple of days and night.  Poor Shira is so dizzy, from her dysautonomia that it has been hard to sit up, making it hard to stand up.  ( of course every time she says how dizzy she is, I start to sing her theme song, "I'm so dizzy, my head is spinning..." which does not help in the least.  As she constantly reminds me,  I was told by a deaf person not to sing with my voice, just sing with my hands.   Of course, I figure, that by singing as bad as I do, I am distracting her from her pain and dizziness.  I guess this isn't true.

Yesterday was rough, last night a tiny bit better.  Today, we are changing her meds around to see if this will help.  We were able to get her up in a chair and she was able to walk a bit today also.  This is huge progress for us.  She is trying to stop using the Dilaudid pain med anymore if possible, as this probably is adding to her nausea and light headedness.  They are also talking about having to start a new IV tomorrow morning if she isn't able to eat as they will want to start giving her PPN (peripheral parenteral nutrition.  While I know this could possibly help, her poor arms are so bruised from the IV pokes and IV's gone bad, I hate to think of them having to put yet another one in her. 

Mike has had a head cold so we have had to keep him away.  He has been great about coming in the morning to bring coffee, or evening to pick up a bite to eat.  Having said this, I haven't gotten to leave the PICU (Shira's room basically) since Saturday evening.  No shower, no change of clothes , nothing. I have brought a whole new meaning to wearing clothes that go from day, to evening to night.  A couple of really good things about the PICU is that there are no mirrors, so one has any idea how bad they look.  The other is that there is a vending machine right down the hall, that has almost every snack/meal one could desire; barbecue Frito's, bbq chips, peanut m&ms, nut mixes and the list goes on.

Today, Mike was feeling a bit better and wearing a mask, so her relieved me so I could go to the hotel and get a much needed shower and change of clothes.  I promised myself that I wouldn't look into a mirror until after I had showered, but when I sat down down to eat at the desk in our hotel room and looked up, into a mirror.  All I can say is Thank G-d I had no idea how bad I was looking.  I am impressed that any of the Doctors/nurses have been taking me seriously.

The neurologist who is consulting with us re: Shira's dysautonomia and possible mitochondria issues has been great at thinking outside the box.  She is guessing that Shira may need to stay in the hospital another 4-5 days.  I am hoping for 2-3 max, but we will see.  Shira is so very determined to get out of the hospital, but her dizziness and nausea and stomach spasms are making it exceptionally challenging.

As much as I can't wait to get out of the PICU, the nursing staff have been amazing.  The kitchen even found tofu and made up a special meal for Shira as she hasn't been eating.

Shira's nurse for this evening came in and said that Shira's goal for the night is to get a good night's sleep, as she hasn't been sleeping well.  I then asked if they had started one of Shira's new meds and she said "yes and I will wake you for your 2nd dose at 1:00) That is what I love about being in the hospital, they want you to get much needed sleep and yet they wake you ever couple of hours to take meds and/or vitals.  So looking forward to this becoming a distant memory.

Again, thank you for your concern, prayers and healing thoughts

hugs

WHAT DOESN'T KILL YOU MAKES YOU STRONGER

We have had a very rough couple of days.

Shira was able to stand up and take 3 steps yesterday which was great.  She is healing very well from the surgery, also very good.  However, all of the stress on her body has wreaked havoc on her POTS and Ehlers Danlos.  She has been horribly dizzy and nauseous  and has been having multiple syncope convulsions.  Her joints have also been popping out a lot and this morning her shoulders were doing what Shira would call "the involuntary tango"  Her shoulder dislocated while the ICU Drs were rounding with RN's and med students and they all cringed when Shira had me help her put it back in :)

Shira hasn't been able to get out of bed today as she has been far too dizzy and nauseous.  Today is the last day of the IV med she has been taking to help her blood clot. This med has a side effect of nausea, dizziness, feeling like you want to throw up, muscle pain etc.,   I hoping that stopping this will be the beginning of her feeling better.  She was able to have one of her 2 IVs pulled, also good, but the other IV was no longer working, so they had to pull it also and start yet another IV, not so good.  She is also switching to oral pain meds, which is good and she still has her pump to use that can give her an IV dose of pain med for break through pain.

I am more positive then ever that this is where Shira was meant to have surgery, as we are now having consults with a cardiologist and a nephrologist who are both knowledgeable and fascinated by POTS.  as well as  a pediatric neurologist who is knowledgeable in Ehlers Danlos.  While Shira's Dr at home is great, she doesn't have a team of specialist who work together looking at her issues and try to problem solve together.  I feel this is such a silver lining for us to be able to get while we are here in Richmond.

They say "what doesn't kill you makes you stronger" and as Shira would say, she should be able to bench press a buick by now!

I hope tomorrow will be a better day for Shira, as she so needs it.  She wants out of her so badly.

Thank you again, for all your support, love, concern and prayers

Hugs

JUST ANOTHER DAY

Shira and I were able to get a little more sleep last night and her fever broke this morning.   However, she has been struggling quite a bit with challenges from her Dysautonmia, which has made today a bit rough.  Since stress impacts her, needless to say her body is under an incredible amount of stress, right now and this was to be expected.  However this  doesn't mean we know what to do about it.  We are working closely with the doctors and nurses to try to figure out the best way to manage her challenging symptoms.

Through it all she remains so sweet and is such a trooper, as is evident in this picture. I think Shira has quickly become the favorite PICU patient, as we have lots of Chocolate in her room (thanks to uncle David and family) and many of the nurses like Bravo TV shows, which is on most of the day in her room.  On the other hand, it is hard to come in and out of her room quickly as she is very chatty even when doped up on Dilaudid.


Shira gives new meaning to being hooked up!

Tomorrow, she will attempt to sit up for the first time in 3 days, and we can't wait.  We are hoping that she will  be able to get off of the IV pain meds and switch to oral pain meds.  Needless to say from laying flat on her back, her hair is a rats nest, so while that seems so minor in comparison to all her other issues, it is still of concern, especially since it will be my job to get her hair brushed out.  ( what a long, run on sentence, that was) Perhaps I shouldn't be in too much of a hurry to stop the IV pain meds!

It's great to be on this side of the surgery but we aren't out of the woods or PICU yet.

Again, thanks for your continual care, love and prayers.

Hugs

LONG NIGHT

Sorry not to have posted earlier but it has been a long night.

Surgery was a success, in that Shira's spinal cord was badly tethered and when the Neurosurgeon released it, it spang right up.  The reason we had to come cross country for this surgery is because on the MRI's and the other testing that was done, there was no proof of a tethered cord.  For people with Ehlers Danlos, the cord can be tethered but not show up on an MRI, so most Drs aren't able to diagnose  it and/or willing to treat.  Finding a neurosurgeon who knows Ehlers Danlos and is willing to operate based on clinical findings rather then is radiologic findings is a very rare species.  Dr Tye, while willing to do the surgery told us he wasn't sure he would find a tethered cord, but has worked with enough Ehelrs patients that he has seen it.  Therefore, when he told us post surgery how tightly she was tethered and how the cord sprang up when he released it, we were all thrilled. He also is now more of a "believer" in this bizarre phenomenon in Ehlers patients.

Now we just need to wait and see what results she gets from the untethering. We remain cautiously optimistic.  The Dr said that he felt the strength in her feet was better post surgery then pre-surgery :) Also, she is feeling some sensation in her lower legs, which have been numb for almost 3 years:)

Last night was rough, her pain wasn't controlled by the morphine, so they switched her to Dilaudid and gave her a pump.  At one point I was sitting by her bed, holding her hand with one hand and her pump in my other, pressing it every 15 minutes so she could try to sleep.  Of course, Shira being Shira, even as doped up as she was, kept telling me that I needed to sleep.  Little sleep was had, but we have gotten through the first 24 hours post surgery.

Shira has spiked a fever, so hopefully it won't be anything.  Right now the plan is that she will be in the hospital for 5-7 days.  Shira is happy that the hospital has BRAVO and TLC and very nice nurses.

Again, thank you for all your support, love, well wishes and prayers.

Hugs

FIX YOU

Sitting here in pre-op room, surgery is suppose to be in an hour, at 10:00 Virginia time.  Surgery should take 2-3 hours, depending how difficult Shira makes it. (that is what Dr. Tye's nurse said" Shira will go to the ICU for at least 2 nights post surgery.  While I am so glad today is finally here, I am also feeling a bit nauseous.  Guess it goes with the territory.

A number of you have asked about sending Shira something, while in ICU she can't get flowers or plants.  The hospital she is at is VCU and the only address I can find is 1250 E. Marshall St.  Richmond VA.

I will keep you posted once she is in a room.  Thank you all for your prayers and all the positive energy you are sending our way.

hugs

Hello It's Me

Good Morning,

I have taken a small vacation from posting and have been enjoying reading Shira's posts about our adventures in Virgina. Her blog address is www.thesicchick.blogspot.com.

For those of you who aren't following Shira's blog, I will catch you up.   On Friday we met her wonderful Hematologist, Dr Kahn, who came in on his day off to see Shira.  It turns out that he has baby goats and we managed to get ourselves invited over to meet the 3 baby goats.  We went over Sunday afternoon and fed and played with his goats.  He was so very kind, and had made food for us and we just hung out in his gorgeous back yard for a bit.

To back up a bit, on Saturday evening, our newly adopted east coast family, the Portners, drove from Arlington to Richmond to spend the night at our hotel and hang out with us.  In less then 24 hours, we ate and drank, played games, Shira got help with Latin homework, the kids swam, we all ate a beautiful brunch, shopped and went to the science museum.  It almost felt like we were here on vacation!

Sunday evening, we met up with Pam, the mom who had recommended Dr Tye and her 12 year old son, Roman.  It felt more like we had known them forever then this was our first time to meet.  We had a wonderful evening with Pam and Roman, and if I can figure out how to upload photo's I will share some.  We ended up seeing them again yesterday and this time we met, Eden,  Pam's 6 year old daughter who had the same surgery Shira will have by Dr Tye when she was 3.  The kids swam and then we went to dinner.  It was such a wonderful evening.

Today, Shira has another MRI  and then a quick dentist appointment, a tooth all of a sudden pushed forward.   Laundry and packing up are also on our agenda as we move hotels tomorrow to a beautiful old hotel downtown close to the hospital, the Jefferson which should be very nice.

Last night Shira and I were talking about how we were supposed to  be on the other side of surgery and flying home.  That she thought she would be back in school this week, rather then getting further behind. While this isn't where we thought we would be, we are making the best of it and trying not to focus on what was to be but rather what is and the wonderful new friends/family we have in our life due to the curve ball we were thrown.  I have to say, that one of the selfish upsides for me, is that I truly love hanging out with Shira.  While I wish she were in school and able to live the life that a 13 year old is meant to live, the other side is that we have gotten so much "together time".  While I hate the reason that makes it necessary to spend so much "together time", I do cherish our time together as  I am truly blessed with such an amazing young woman for a daughter.  

Here are some pictures.

Hugs



I want a baby goat!

 Shira sharing her salty chips with our new four legged friends

 Shira and Roman doing Hypermobile party tricks.

Above, is Shira with her hematologist Dr Kahn with the Gandolph and Gretchen Goats. (dad and mom)
 Shira, Roman and Eden in pool demonstrating "ballet fingers"

 Shira, Noah and Ben  Portner at Brunch

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