Wednesday, November 12, 2014

Wordless Wednesday-11/12/2014






Tuesday, November 11, 2014

Happy Veteran's Day

     To all the men and women that are serving, have served and the deceased, Thank you for your service!  If you have served, and suffered or are suffering from post traumatic stress disorder, hopefully you are getting the help you need and have a great support system!  






Monday, November 10, 2014

Not Our Friend!

   

     First, the story behind the Wordless Wednesday 11/05/2014 picture.  When we are home I usually sit on a stability ball to give Kerstin her boluses.  This smile happened when I was about to sit, the ball started to roll and I made a sound that apparently had her "tickled pink"!  What a smile?!?

      Now, I can think of a few people and things that fit the category; "Not Our Friend!"  When raising a child with "special needs" you encounter things along the way that just are not friendly or ideal.  When these happen, we push forward.  I am especially amazed by my daughter's strength and courage.  I often say that I wish I had just an ounce of it.  


     It was this time last November that we found out that Kerstin would not be going home after her spinal fusion as originally thought.  She hadn't been able to take a small amount of her bolus without abdominal distention, not just a little bit either. So, for that unexpected illness, Pancreatitis comes to mind a year later.  Definitely not our friend!  She was diagnosed until a few days and many tests later but, she had it.  My child had been diagnosed with something the doctors and nurses said is rarely seen in children.  


Spinal Fusion had gone well.  She was dealing with something else.  Receiving TPN and Lipids for almost 3 weeks because of Pancreatitis.  It didn't steal her smile.


     Epilepsy/Seizures, I don't think I really need to explain why they are not our friend.  For me, as Kerstin's mom, they seem to come without warning.  I am very thankful for the Facebook pages that I have found.  They are filled with links and information on how seizures come on and what the person feels before, during and after and episode.  I've never had a seizure but, Kerstin has had quite a few.  They are hard to watch.  As a parent seeing your child seemingly looking at you but her eyes are so void it's like she is looking through you!  Not even a gentle rub can stop them.  They don't leave until they are ready or Diastat is administered.  Even then, as we saw earlier this year, did not immediately work.  Seizures can be vicious!

     Spasms and spasticity are not out friend either!  We have muscles all over our bodies, that means that spasms can happen anywhere.  Kerstin usually has spasms in her legs that causes her to at times violently kick.  At times, gently rubbing them can sooth her and others required a pain med to cease.  Spastic Quadriparesis is the medical terminology or diagnosis given as types of Cerebral Palsy. 

     Sleepless nights, are not our friend.  Kerstin goes through these phases of having very sleepless nights.  Some nights, she will wake up at midnight and not fall asleep until the next morning...6 a.m.  That isn't good for anyone. 

     Medicines that do not work and cause other issues, not our friend.  That recently happened with the scopolamine patch.  The first patch, used to help with drooling, was used September 6.  A few weeks in, I knew it didn't seem to be helping, I decided to give it until November 6.  Had to discontinue them as of November 3, causing a rash behind both her ears.        
Right ear

Left ear..upside down


     I could go on and on about the things that are "Not Our Friend", on this journey, I can only imagine there are plenty of things that aren't friendly, that require more energy than others.  As the saying goes, we have to "role with the punches".

More to come...Neurology appointment today.  Hopefully we will have an update on the recent seizure activity. 

Monday, November 3, 2014

An Unforgettable Day: A Look Back

     Monday, November 4, 2014.  A chilly morning in downtown Birmingham, Alabama. We around the night(11/3/13) before so we wouldn't have to make to two hour journey at 3 a.m.  We got to the hospital at 5:30 a.m. to make sure Kerstin was checked in, all forms filled out.  We met team after team, nurse after nurse.  It seemed like an overload but it was reassuring that my little angel was in good hands.

     Around 7:30 a.m. the nurses came in to take her back so that the could begin the anesthesia and all that came with spinal fusion prep.  We were told that someone would periodically come out to inform of what was going on and that I needed to leave cell numbers so that they could contact if we left the waiting room.  Yes, they suggested, getting a change of scenery, it would be a long surgery.  About two hours later, I got a call to say that Dr. Killian had started the incision.  It took a lot to not cry.

     It would be hours before another report would come and even longer before I would see my love.  The entire process was pretty much all day.  It was around 4 p.m. before she was out and in recovery and it wasn't until around 5 p.m. before I saw Kerstin.  It was a bit of a shock when I did.  I had been warned that she would be getting a lot of fluids while she was having the surgery and that with her lying face down, it would settle to her face and arms, causing significant puffiness.  Understood, but actually seeing the difference was shocking.  Surgery went well.  Dr. Killian showed me her after x-ray picture and it was a huge difference.  My sweet pea's spine was straight!



    Kerstin would be on the 7th floor in PICU for the next 24 hours, then onto the 10th for what we thought would be for the next week. I never knew that ICU was such a busy place!  Not as quiet as I thought either.  This would be a long 24 hour stay.  Over in the night Kerstin started having some complications with oxygen and her blood pressure dropping.  She needed more blood.  She actually needed the 4 units we were told to have on hand.  We had to use the blood bank because the four units from her family had clotted or congealed.  She needed that pain pump overnight as well.

     Just being in somewhat of an upright position overnight, the puffiness and swelling was already going down.  It wouldn't be until late the following evening that she could leave PICU, she was headed up to 1046H.  That's where we would live until Thanksgiving Day 2013!

Looking back...it's been a journey!

More to come...

Monday, October 27, 2014

Scars of Strength

     As November approaches, I can't help but think of the year that was 2013!  This was a year filled with what seemed like surgery after surgery, hospital stay after hospital stay; three in one year.  No matter how hard it seemed to me and for us, I am aware of the families we came across that were dealing with a little more than we were.  However, Kerstin was dealing with a great deal.  At times, I felt like she was dealing with more than any little girl should have to deal with.

     I've said it before, Kerstin's will and strength gives me the strength to go forth each day.  There are times that I have had absolutely no idea where the strength has come from to continue doing the things I do for her each day.  I know that if my sweet pea can smile through the things she's endured in her 12 years, I can keep fighting!  

     "Scars of Strength", came to mind when giving Kerstin a massage after a bath one day.  I was looking at the scars on both her feet, so long and almost around the entire foot, looking as if it was sown back on, with pins/screws to boot.   The bilateral triple arthodesis, was done because her feet had started to turn in  at the ankles and had gotten to the point that she could no longer wear her AFO's and the bone was starting to cause callouses on her feet.  We were even told that if her ankles continued turning, she would not be able to wear shoes.   Now, she is able to wear her AFO's and shoes, comfortably. 
Day of surgery 02/28/2013







     Then, there's the g-tube, an everyday reminder that there is an unnatural hole in her stomach.  Yet, this "scar" is there because she was no longer able to eat the way she had been most of her life.  It was unhealthy not to mention unsafe.  She aspirated, silently, during a swallow study at Children's Hospital.  
Kerstin's new belly button...


     Kerstin's biggest "scar" is over 17 inches long and directly down the middle of her back.  She endured over 7 hours of surgery to have a spinal fusion.  The incision is a few inches from her neck down to her tailbone.  Underneath the scar, rods and more screws to correct a 50 degree curve that had started to cause problems with her lower right lung. 

One month after spinal fusion. 

Before and after spinal fusion

Continuing to heal...



     Kerstin even has scars from central and PICC lines that had to be placed during her spinal fusion.  Still visible are scars on her neck and her left bicep area. 

PICC line scar

Central line scar...and scopolamine patch

     So, Kerstin's "Scars of Strength" are just that, signs that she is a tough little girl.  She has more strength than many.  I've looked at her, watching her in hospital beds, at times with so many tubes, lines, and wraps covering her little body and have wondered; "How much of this can one child endure?"  "How does she manage to smile when in so much pain?"  Faith!  Strength!  No one in her life telling her to give up!  No one with negative vibes surrounding her!  
     Her scars, are reminders for me.  Don't give up fighting.  Be strong and have strength...



More to come...