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...

Last day of school...

So, here we are!  Kerstin's last day of school until after surgery, which is probably January.  The plan was to go around to all of her teachers and classmates to tell them to have a safe Halloween, Happy Thanksgiving, Merry Christmas and Happy New Year!  Didn't work out!  I did not want to get too emotional and she notices, she senses my emotions and would have cried all the way home.  One of her friends since Pre-K overheard a conversation I was having with one of the teachers and looked at me like she wanted to cry.  She is such a sweet girl, and has always been so sweet to Kerstin and me.

What we did instead was said our "see you later's" to her teachers in the hall.  They all wished her well and speedy recovery.  Even exchanged numbers to check in on her!  It is truly a blessing to have TEACHERS that really care for their students' well-being, wish their supervisors and administrators were as caring but, that's a post for another day!  Wouldn't you know that Kerstin did NOT leave school empty handed either!  Her school's nurse gave her night gowns to be warm and comfy, her teacher and speech pathologist gave us a goodie bag with pajamas, slippers, glove and ear muff set, socks for Kerstin and had a magazine, hot cocoa, Cokes, snacks, lotion, hand sanitizer.  Must say that we have been truly blessed  with so many supportive people.  The blessings have come in mail, via UPS and from church.  Comfort items and monetary support.  It all means so much, more than the supporters will ever know!!

So, we are here, no more school until January.  Eleven days before surgery!  Please continue to pray with us for Kerstin's strength, safety and healing.

More to come...

Wordless Wednesday-October 23, 2013

Things I wish I did NOT know much about!

     There is a saying, "You learn something new everyday!"  True! There are some things I wish I did not know much about!  Since Kerstin's diagnosis back in June 2002 it has be big emotional, educational and at times very stressful roller coaster.

     I feel like I have so many professions all rolled into to one, ME!  I am a cook/housekeeper/butler, chauffeur, paraprofessional, nurse/caregiver, secretary, personal shopper, therapist (physical, occupational...), consoler...most of all MOM!  24-7 the duties of a mom is never ending.

     Since the diagnosis of Cerebral Palsy, we have been faced with so many other diagnoses and terminology it gets pretty hard to keep up with it all.  At the start, Cerebral Palsy...I was a two something mom, first child, and to hear at her 6 month check up that she may have a mild to severe case of cerebral palsy was shocking and very hurtful!  I had no idea what it was, what to expect, what it would do to my daughter.  To be clear, if there was/is a question...Cerebral Palsy is NOT contagious!

     Cerebral Palsy:  is like an umbrella, covering a few forms of motor conditions that affects the development.  Cerebral refers to the cerebrum of the brain.  Palsy is uncontrolled movements of the body.
There are different types of Cerebral Palsy (CP); spastic, ataxic, athetoid and mixed.   We would have to see a neurologist to determine the type; Spastic quad.

     After that first diagnosis there came so many terms I needed to be aware of, so many doctors Kerstin would have to see.  Never imagined the journey we would be on.  I had heard of seizures before.  Never thought I would witness one firsthand, and it be my child fully convulsed.  April 15, 2004, is not a night I will long forget.  Epilepsy!  Another diagnosis, she will have to be followed closely by the neurologist. At first, it was thought that her seizures were febrile, then pain related, not so much the case.  She has been having unprovoked seizures.  Recently having a few small seizures, four in the past week.  Her Depekene dosage has been increased by 1 mL.

     More terms I'm becoming an expert at and wish I wasn't:  Atelectasis, bilateral triple arthrodesis, bolus, chest percussion therapy (CPT), gastrostomy tube (g-tube), pulmonologist, scoliosis, Dandy Walker Syndrome, developmental delay, dysphagia, failure to thrive (FTT), seizure disorder...
Raising a child with special health, medical and education needs is no easy task for anyone.  Place this task on a single parent and it can be overwhelming.  I am doing my best.  I constantly pray for the strength to do all that I can and to have the patience to do so.

   Please keep us in your thoughts and prayers!

More to come...
   

   
   

Busy day!

     Monday, October 14, 2013 was a very busy day!  I still haven't recovered, it seems.  The day started out very early, we had 123 miles ahead of us and in order to get to Birmingham, AL by 8:30 a.m. for the first of many appointments.  So,we had to leave home pretty early.  Time for updated x-rays, and there we a lot of images taken. They were taken on her back, on her side, best bend to the right, best bend to the left.  Once those were done, we had to leave that hospital and head over to Children's were we would spend the rest of the day, really we did.  We were there at 9:30 a.m. and did not walk out until 4:50 p.m.  We had a jammed packed schedule.  Originally it would go like this, CT scan of her spine ( Thoracic/ lumbar), appointment with  pulmonologist, appointment with neurologist and an appointment to see APASS once she received an okay from the specialist.  We ended up having to have a chest x-ray done for the pulmonologist.  We started out on the second floor for CT scan, down to first to see pulmonary doctor, back to second for chest x-rays, down to one to finish up pulmonology appointment, across the hall to neurologist and finally back upstairs for APASS appointment.  Roller coaster day!

     I was not expecting any results from the x-rays at the doctor's office or from the CT scan,  Kerstin's orthopedic specialist because he was in surgery, and I knew he will need to look at them in order to give me results.  Which I'm anxiously awaiting.  Being a mom, and a worried one at that, I've been examining the x-rays and comparing them.  It seems as if my little lady's curve has increased since July.

On the left is the image taken July 23 and on the right October 14.

     After chest x-rays were done for the pulmonary appointment, the doctor came in and informed me that my daughter's lungs are in fact, being affected by the scoliosis.  She informed me that it is best that the surgery takes place soon.  Now we have another diagnosis added to her list of medical concerns, Atelectasis. This refers to collapse of part of the lung.  Along with this new found diagnosis, comes new meds and therapy.  Kerstin will have to have breathing treatments twice a day followed by chest percussion therapy (CPT).  The treatments will either be from the nebulizer or Proair puffs. I had to have in office training on how to cup my hand and how to perform the CPT.  The treatments and CPT were started on Tuesday.  My princess is not a fan of the percussions.  She smiled at first, I think she thought we were playing a game of some sort.  Wednesday, she cried a little when I started.  Today the same.  I talk to her before I start, as a warning of what's to come.  When the percussions start, she looks at me like, "Why are you doing this?"  I don't like doing them, it is uncomfortable to me, so I can only imagine it's the same for her.  Having her mom, seemingly beat her in the chest, sides and back can be very confusing to a child.

Getting a breathing treatment to be followed by CPT. 

     We are 18 days away from surgery.  Kerstin only has four days of school before she is out until possibly January.  Tomorrow we will go to Red Cross to make directed blood donations for her procedure.
She is always surrounded by love and adored by many.

Kerstin and her cousin listening to music as we wait...

More to come...

Wordless Wednesday-October 16, 2013

Coming to terms? Not really!

     Well, I thought I was "coming to terms" with the idea of Kerstin's upcoming surgery...now 25 days away.  This is not exactly the case.  It seems the closer it gets the more stressed I become.  I'm feeding her and fighting back the tears because all I can think about is, "How will they have her laying while they perform the surgery on her back?"  "How out of it will she be once the surgery is over?"  "Will she be in much pain?"  So many questions, that I don't have the answers to.  I do know that her surgery will be no less than three hours, meaning it will be some time before I will be able to see her once they take her back. She will be given anesthesia, it has to kick in before they can start, she will be in surgery for a few hours, then in recovery before I can see her.  After that she will be in the pediatric intensive care unit (PICU) for at least the first night afterwards.

     Everything is becoming so real now that all of the doctor's offices are calling to remind us of the many pre-op appointments she has coming up.  There is a full day ahead of us this coming Monday.  The day will start with an x-ray of her spine followed by a CT of Thoracic and Lumbar spine, first ever visit to a pulmonologist, a follow up with neurology all followed by APASS (Anesthesia Pre-Admit Screening Service).  What a day it will be!

     I'm praying daily for the strength to carry on, but I feel so weak and helpless at times.  When she's moaning and I don't know what is going on or what I can do to console her and make it better.  When her arms or legs are shaking and there's nothing I can do to stop it.  No matter what I do at that very moment, nothing seems to help...there's nothing I can do but cry and pray!  It is very hard, most of the time.  No matter what's going on, how I feel...it seems like there's no break, no sick days for me!  So, I press forward.

Home away from home, in a few weeks. 

 
More to come...