The Summer of New Things --Things Anew!

     As we have eased into Fall, at least the calendar says we are.  I reflect back over the summer that was.  Uneventful it was not.  It started out with the usual lazy days of summer.  Those days suddenly changed in July and seem to have been almost unending since.  Kerstin had some stomach/ GI issues at the beginning of July which lead to some vomiting which lead to her aspirating which lead to pulmonary issues.  This one episode of vomiting lead her to on and off pulmonary and bronchial problems.  Before she had the actual vomiting, I had started to take note of Kerstin constantly chewing and smacking shortly after her boluses.  We talked with nutrition and her doctors and she was put on a medicine for reflux with the hope that it would help.  Not so much!

     So, back to the episode with the vomiting and pulmonary problems.  Kerstin was sick, having these bad coughing spells that would seem to take her breath away.  No amount of CPT and breathing treatments seemed to be working so, we would head to the pediatrician.

Kerstin was listened to, labs taken, sent for xrays to make sure that the crackle in her lungs (right specifically) was not pneumonia.  Her doctor placed her on a round of antibodies for a week to help clear her up.  Along with the antibiotic she was receiving around the clock CPT and breathing treatments.  

A week later Kerstin still was not feeling better!  This congestion just wasn't breaking, the antibiotic had not cleared anything.  We were back at the pediatrician again only to find out that not only was there crackling in her right lung, it was present in her left.  Her doctor looked just as defeated as I did.  He told me that he was going to call up to Children's and talk with her pulmonologist.  As we sat in the exam room, reading stories and listening to her Kirk Franklin.  I remember Kerstin looking at me and smiling.  I checked my phone to see what song she was listening to and it was "My Life Is In Your Hands".  I posted the screenshot to Instagram because my first thought was how appropriate the song was in that we never know what a day will hold for us. 

     After some time, the doctor came back to inform that he had sent xrays and labs to Children's and that Kerstin's pulmonary team was prepping a room for her!  I remember just staring at him!  He said they agreed that it would be best if she was admitted there in order to get the care she really needed. 

Prepping a room...they had done that indeed.  We got there, she was quickly admitted and taken up to her room where we would spend the next four days.  Kerstin would get CPT and breathing every three hours the entire stay, she was having trouble with her oxygen levels and required oxygen for 2 of the 4 days.  

She manages to smile through so much. 

It has been a long day. 

     After being discharged and home for a few day, Kerstin ended up back at Children's, this time with big GI issues, literally.  Kerstin's stomach was so distended, I was so afraid that pancreatitis had made an unwanted return!  Before knowing we would have to go back, we watched Kerstin's stomach balloon in the matter of hours.  I researched and found Youtube videos on what to do in the even of...venting was the common thing mentioned. Venting the gtube was not helping! I emailed pictures to her nutritionist and nurses.

 Kerstin was so uncomfortable and did not want to be moved in any position.  The nurse called back and said she had received the pictures and wanted me to pack a few things since we lived so far from Children's!  I hadn't even fully unpacked from the week before.  She gave directions on what to do when we arrived back at the hospital; if Kerstin go sick(er) on the ride to take her directly to the ER at the hospital, if not further directions were given.  Thankfully, the luggage was NOT needed.  An in office procedure determined intestinal gas, that could not and would not be corrected with gtube venting.  Also, nutrition and meal plans were changed while there.  Fast forward to about a month later, just before Kerstin's pulmonary appointment, we have respiratory issues again.  Pulmonologist hears more crackling in her lungs.  Days before she had more vomiting and apparent aspiration.  So, more antibiotics!       
     Fast forward again, about a week this time.  We are meeting with a new GI doctor.  He was in no rush to be in and out of the room, he listened to all questions and concerns and sincerely answered each.  He even wanted to watch as Kerstin was given a bolus to see firsthand the chewing and smacking that eventually makes her gag and retch and sometimes vomit which leads to the aspiration and congestion.  The smacking...rumination!  What? I had never heard of that.  That is a topic for another post on another day.  More to come...

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...