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