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. 

A Thanksgiving to remember!

     Twenty-six days after arriving in Birmingham, Alabama for Kerstin's spinal fusion, it is Thanksgiving Day 2013.  We wake up to possible snow flurries and 21 degrees of bone chilling cold!

     Today is the day that I have been waiting on.  I know with every fiber of my being that this is the last morning we will wake up in room 1046 at the Benjamin Russell Hospital for Children at Children's of Alabama!

 
 The nurses are changing shifts and not one doctor has come around like they had been coming on previous days.  Around 5:30 and 6 a.m.  I knew to be sitting up or at least awake becasue they would make their rounds and I didn't want another one of her doctors to scare me by rocking me to wake me.  Yes, that happened!!

     Finally, around 8 a.m. we got word that all of the doctors that had been following Kerstin's treatment and caring for her were in fact communicating and about to make their rounds.  First, my friend, the doctor that rocked me constantly saying "mom, mom...", came in with his team to say that Kerstin's levels were continuing to improve and since she had tolerated smaller boluses of her Pedisure the day before and even smaller of the Pedialyte the day before that, it would be safe and okay for her to go home, as long as her admitting doctor agreed.  I knew that we would be going home because her nurses had previously told us that we could go home if her amylase and lipase levels were in a safe range.  So...it's time for a HAPPY DANCE & HAPPY THANKSGIVING, Kerstin is headed home.
Our time in our "apartment" has come to an end! Truly Thankful.

     We are now home, Kerstin is healing and making great strides on her road to recovery!  I'm including some pictures of our stay at Children's and Kerstin's before and after surgery pictures.  Even her pouting Thanksgiving night.  I think she misses the attention and the "friends" she made in the hospital.

Kerstin with her the Justins!

Kerstin with "Mr. Kerstin"-Justin.

Sleeping comfortably!

One of our many evening strolls!

In the Rehab Gym-standing!!

Sitting in her chair watching stories online.

Finally in the rearview!

   

Thanksgiving night, first night home!

Hiding from the daylight!

More to come...

Long overdue, and much to be said!

     Sorry it has taken so long for me to update.  November has been extremely busy!  I don't even know where to begin!  Thinking back over the past three, I will start at Sunday, November 3, 2013.

It is a beautiful Sunday, we get up and get the day started.  I'm double checking to make sure everything is packed, and the vehicle is loaded.  The time is passing so quickly, we have to check in to our room and I wanted us to get there before nightfall.  All of that fell into place.

In the hotel room the night before surgery, sleepy but, not wanting to give in to the nap!

     We arrived at the hotel that's just blocks from the hospital by 4:15 p.m.  We are all checked in!  The night proved to be very restless for me, I think I may have gotten 2 hours of sleep.  4 a.m. came really fast, Kerstin had to be in the hospital by 5:30 a.m.  We had tons of support from our family and friends.  I got a lot of well wishes via Facebook, text, and email throughout the day.  The support means so much.  I often tell myself; "If they care, they will show it, one way or another, they will reach out.  If they don't, don't stress it!"

Day of!  She knows "something" is about to take place. 

     Arriving at the hospital on a dark, chilly, November morning.  It seems so quiet and kind of scary at the same time.  I'm trying to be brave and bold for my daughter, she keeps looking in my eyes.  I've talked to her about what is going to take place on this Monday, 11-04-13.  We sign in, get our visitor passes then up to surgery we go.  There we register, she gets her ID bracelet...we wait!  The wait doesn't last long before the buzzer is telling us, it's time for her to go to the back.  She has to get into her gown, we have to meet with the nurses, techs, anesthesiologists, respiratory, even someone with neuropathology.  A large surgery team to make sure that my daughter was comfortable and safe during a procedure that was going to last for a fair amount of time.  Once all of the caretakers came in and introduced themselves, our family could come back and say their "I love you" to Kerstin.  It's all real!  It finally came down...my daughter is about to go back into surgery, be put to sleep and will stay that way for more than 5 hours.  I was given fair warning that once she came out, she would be significantly swollen.  Her face would be really swollen, her eyes would be and her mouth.  Her arms and legs would also be swollen.  I was also told to not be alarmed because she would have oxygen and what is called a Central Venous Line (CVL) in her neck.

     Seeing Kerstin for the first time 9 hours later was rough!  My daughter was still out of it but, coming around a bit.  She was almost swollen beyond recognition.  I kept telling myself, "You have to keep it together!"  At this point, I have no idea what the night or the next hour will hold, I do know that I'm here for Kerstin!  She's out of surgery, we are headed to the Pediatric Intensive Care Unit (PICU) for at least 24 hours.  What a night?!?  I had no idea how loud it would be nor how much in and out.  Well into the night, the ICU doctor wanted to see how she would be without the oxygen, not good, her blood pressure dropped.  They watched my daughter so closely that night and next day because her heart rate was so high.  Her blood pressure even got high at one point.  Eventually, late the next day, she was able to go into a regular hospital room.  10th floor here she comes...

View from the 10th floor of the Benjamin Russell Hospital for Children, Birmingham, AL

     Now, to not make this very long, let's fast forward to today, 3 weeks post surgery, we still see this 10th floor view every evening.  Even got to see a double rainbow the other day!

Beautiful view of downtown Birmingham.  It's gets boring after 3 weeks!

     So much has taken place since November 4, most notable, Kerstin is still in the hospital.  

Week one:  Post surgery.  Doctors wanted to start Kerstin back on her boluses later in the week.  Her stomach started to distend, she became very swollen (belly), she was uncomfortable and her stomach was tight to the touch.  The decision was made to try her boluses at half and half the next day, that still did not work.  Now she will have to go through a multitude of tests, ultrasounds, x-rays and blood work to try and figure out what is going on with my little princess.  All to come up with the diagnosis of pancreatitis.  What is that?  I had heard of it, never in children!  Her doctors and surgeons were just as dumbfounded as I.   What caused her to come down with this?  There were no gallstones on the ultrasound, no visible spots on the pancreas, so what is causing her enzymes (amylase and lipase) to be so elevated?  One doctor even called her their "little mystery".

     According to her doctors and nurses, normal ranges for amylase is from 30-100, Kerstin's has been as high as 355 and today ( 11-18-13) she was 244; normal ranges for lipase is 13-150.  Believe it or not, Kerstin's highest was 2526 and today it was 1797.  Now, neurology and GI doctor's have been called back in!  Seizure meds will be changed, she will have and intravenous med, Keppra via IV, while she's still in the hospital.  They are making sure her stomach and bowel are completely empty, giving the pancreas a rest and hopefully get the enzymes down. 

     In the midst of all of this, she is recovering nicely from the original reason we were here, the spinal fusion.  She has had some physical therapy, she has begun to tolerate sitting in her wheelchair for  2 or more hours.  This was no easy task at first.  (See pictures)

     What went from at least a one week stay has turned in to our third Monday night, 2 hours from our home.  I'm missing my bed and bathtub.  Through all of this I'm praying for my daughter's recovery and strength.  

     Definitely more to come from Children's Hospital-Birmingham, AL...