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