Epidermal Nevus

     This year, has been going fairly well however, I have been really bad about updating things here.  I have been updating Kerstin's Instagram a lot more.  Be sure to following Growing With Kerstin there.  
     Now, I will take us back to August 2016, when I noticed this little spot behind Kerstin's left ear.  At first I was thinking maybe her earring had scratched her or the post had stuck her and I immediately started applying an antibiotic ointment to it.  It seemed to smooth out some but, later it came back and appeared bigger and no matter what I applied it seemed to keep growing.  All while growing, it become more irritating to Kerstin,  she did not want it touched in any way, not to have the area cleaned while bathing, not to mistakenly touch it while dressing or anything. 

continuing to grow

     In October of that year, Kerstin had an appointment with a dermatologist that I walked away from still unsettled and wanting more answers.  The appointment just did not seem thorough or complete.  There had been cultures (cultivation of microorganisms) done on this area only to come back negative for any types of fungi.  So, back in December of 2017 a new medical doctor was added to Kerstin's team and the center of her medical home, a female!  Yes, we were enthusiastic about it and she went right to work with us.  On a thorough exam of missy, she determined that she would refer her out to another dermatologist. 

     February 2018, Kerstin had a new appointment with dermatology and it was determined that a biopsy needed to be performed in ordered to know how to properly treat this spot, whatever it may be.  Scary thought of this in office procedure where a small plug of her skin would be cut so that it could be properly tested. We have to do things that are oftentimes scary in order to take care of our children.  The process included a numbing applicant, that would be in place for 30 to 45 minutes before the cut.  Then, post cut, we had to wait another 30 minutes to ensure that the bleeding had stopped before she could leave.  

The wait!  It is so hard to be patient and wait on the results of a skin growth on your child.  Then the call comes and the nurse says she is calling from dermatology with biopsy results.  Take a deep breath and listen, "epidermal nevus".  What?  A very irritating and itchy skin mole.  It may come back but she has been prescribed a skin topical and now she needs to bath with have her hair washed with products that contain ketoconazole as an ingredient.  Since February, that nevus has inflamed twice, the cream is applied and it goes away again.  Another step on this journey. 

More to come...

References:
Epidermal nevus.  NIH U.S. National Library of Medicine https://ghr.nlm.nih.gov/condition/epidermal-nevus

Harsh Reminder!

      Reminder(s) is defined as "a person or thing that serves to remind", according to dictionary.com.  Then what is remind?  The same site tells us that remind is to "cause a person to remember".  Life does not give us options on how we will be reminded of something, nor do we know when it will happen or whether the reminder is subtle and nice or just harsh!  Well, on Wednesday morning we got a not so subtle reminder that Epilepsy/seizure disorder is still a very prevalent part of Kerstin's journey!

     The thing about seizures is that they have no time frame, they can suck the joy out of any moment.  They can happen in the middle of the day, during a ride from a doctor's appointment, in the middle of the night or even early in the morning, marking the end of a good night's rest.  Which is what happened yesterday.  Kerstin was suddenly awake at 5:40 a.m. and thrust into seizure activity.  With two episodes of cluster seizure, I am so thankful that she did not require medicinal intervention to stop the seizures. 

     So, what are these cluster seizures/seizure clusters?  Clusters are when seizures start and stop.  The Epilepsy Foundation states that, "Seizure clusters are also known as repetitive or serial seizures, with return to baseline between events".  How can one truly prepare for that?  There really is no comparison for a parent or caregiver tending to a child with special health care needs that cannot tell you that they may be sensing that one is coming (an aura) nor can you truly know what it is like when you have not had a seizure yourself.  As recommended, it is good to make notes of the seizure activity:  how long it lasts, how many clusters, how long it took to return to usual activity, etc...

     To those clusters, in the dark coldness on January 3, 2018; thanks for the harsh reminder.  I am reminded to always know what to look for and to continue learning and growing on this journey of Growing With Kerstin. 

More to come...


Reference
Epilepsy Foundation:  Seizure Clusters 
Dictionary.comhttp://www.dictionary.com/

Reflections: An Interesting Year

     2017 has come to an end.  This New Year's Day 2018 is a day of reflection on what has been in the past year and looking forward to what is to come in the new.  We never know what a year will hold for us but, we are always hopeful that it is always filled with many blessings, good tidings and great joys.  January 1, 2017, I never would have thought that after a few good years of no hospital stays, and little to no illnesses, that Kerstin would have a year with several stays and a procedure.  Yet, we ended the year partying and celebrating 16 years of a blessed life of growth and more growing to come. 

     I have in the past, commented that "it is always good to go to Children's and leave on the same day", we have and continue to have our share of those days.  Thankfully, most of them have been in and out days.  However, in July and again in November, we did not.  The year was well, appointments were also going well.  Kerstin had a good year.  Then there was July, Kerstin got really sick with a summer cold that just would not seem to break.  She was taken to her pediatrician to start the usual rounds of meds and even a chest xray to only saw what was feared...pneumonia.  So, an antibiotic was started.  Though, a week later Kerstin still was not better we went back to her doctor and on examining her, he determined that her lungs sounded worse than the week before.  He thought it would be best if he called her pulmonologist.  We sat and waited for a while for the doctors to consultant to be told that they had a room for Kerstin already at Children's and that her doctors there thought it would be best to get her started on a rapid rounds of intravenous medicines.  We ended up there for a few days.

     Backing up to September, a new specialist was added to Kerstin's medical team, a new gastroenterologist.  This would bring changes to meds as well and talks of how to get missy's gut stable and rumination under some sort of control.  Things moved quickly and at times it seemed to quickly for me;  the constant consults with the GI specialist and surgeon turned to placing a GJ tube in place of the Gtube.  The procedure was scheduled and the tube was placed.  Kerstin now has a feeding pump again this time there will be no boluses, just continuous feedings.  

First visit with new team member. 

Checked in at IR

Post GJ placement

Hours later, all smiles and ready for the new journey.

     Sweet November...and what a story it has for us.  I am not fond of Novembers at Children's of Alabama.  Yet, this is where we found ourselves and the week before Thanksgiving.  Kerstin had gone to therapy the Wednesday before and the day just seemed to go downhill quickly.  She started having issues with her feedings and was actually vomiting food, which should not happen with jejunum feedings.  After calling to GI, they stated that she needed to be seen in the emergency room there at Children's!! After spending a few hours there, I was hopeful that we could go home but felt like it would be the case.  In fact, we would spend a week there.  More pneumonia, seizure activity as well as the stomach issues. 

Back at Children's

Resting after a very long day. 

Comfort aids

A mother's saving grace(s)

     In spite of all of those before mentioned instances, the year was well and I am certain 2018 will be be even better!  

Looking forward to what's to come.
What will happen if we don't give up?  Endless possibilities!

More to come in the New Year!

It's happening so quickly!

     "It's happening so quickly!"  That was my response after receiving a call from a radiology nurse at Children's Hospital on last Monday, October 2nd.  With a very calming tone, she wanted to speak with the parent or guardian of Kerstin.  After pleasantries were exchanged, she told me that she was in fact calling to schedule Kerstin's appointment to have her G-J tube placed.  I must admit that I was caught a bit off-guard by the quick turnaround. I was even more surprised when she stated that the procedure could be done this Friday the 6th or Wednesday or Friday of next week.  I said, "This Friday? It's happening so quickly!"  I paused, I guess she thought I had hung up or something.  I grabbed my datebook because another one of Kerstin's appointments had been rescheduled to this week, I told her that Friday would not work for us. 

     Believe it or not, the Sunday before, I had mentioned to my family that I felt like there would be a call from either the doctor or the hospital about scheduling the procedure.  So I was mentally preparing myself for this by writing down possible dates.  This did not become real until Jenna (nurse from radiology) called.  Real did not become so emotional until the call.  The tears came...it is real, again.  No matter how minor it may be said to be, it does something to the emotions because, Kerstin is my child!  My girl child!

Dates of possibility.

     So, on today, Kerstin will be having the procedure to replace her g-tube with a g-j-tube.  Kerstin is strong.  This new feeding tube will only help her even more.  Having to have the g-tube became touching but it was for her good and this g-j-tube will also be for her good.  

More to come...

"One Small Ripple"

   

     One small ripple...ripples in a pond.  We have heard the expression that we are all connected in some way; our connections are intertwined in ways we may not even be aware.  Also, the ripple effect is often considered when we think of how one action can flow out to other areas and people around us.  Those actions can be negative or positive.  Well, I like to think of my daughter, Miss Kerstin as a ripple.  She is a ripple in a pond of so much love!

One Small Ripple

     While watching one of her favorite PBS Kids shows, "Splash and Bubbles" with her, I heard the sweetest little song about making a difference.  "One Small Ripple", the lyrics of the song:

"I'm gonna make one small ripple.

Yeah, I believe a little thing like that 

can turn into a big ol' wave.

I'm gonna make one small ripple.

Can you imagine what a difference 

a lot of little ripples could make?

The tiny things we do today, 

make a world of difference half a world away.

So, if I had the chance I should make my ripple

something good.

You'll be amazed, I know it's true. 

I hope you get inspired too. 

With one small ripple coming from me and you.

And see what my small ripple can do."

     The song made me further think about how I have been told numerous times how Kerstin has touched so many with her smile, her will, her strength.  You see, this child of mine has been through so much but she still manages to smile and inspire others, not just locally but across the state country and around the world!  She is my light, my life and I truly hope that her ripple is making a difference.  It has for me, and I don't mind sharing this journey of "Growing With Kerstin" with you all! 

More to come...

Rumination! GI findings

     Rumination!  What is that, you ask?  That was my question as well.  So, rumination is defined as having a deep or considered thought about something and it is also defined as the act of chewing.  Makes sense!  Chewing...smacking, that is what Kerstin has been doing.  Her gastroenterologist (GI doc) also said that rumination could be behavioral but, it would be difficult to determine if that is the case with Kerstin.  I am no medical expert but, I am a Kerstin expert, I do not know if it is actually behavioral.  This has been ongoing for a while, when it started she would do it as soon as I would be done with her bolus and close her mic-key button.  It would be ongoing for 20-30 minutes after. 

     This process becomes so bothersome to Kerstin especially when she does it to the point of gagging/ retching and sometimes actually vomiting.  Which would lead to aspiration as mentioned in "The Summer of New Things -- Things Anew!".  Kerstin has been placed on medicines for reflux, which is also a problem and with this medicine, we had hoped it would help with the chewing/smacking.  Originally, that was what the chewing was thought to be.  

     Well, after meeting with GI and he took some time to watch Kerstin receive her bolus, and immediately began to ruminate.  He informed us that a rumination specialist would be on board in December and he would like to add him to Kerstin's care team.  About a week after her appointment with GI, Kerstin has this lime green residual, which she has never had before.  It was especially surprising since she rarely ever has residual in the mornings. I call to inform her team about this, I was pleased that they were not alarmed by it and was told to keep an eye out for it.  She did not have any more that day or the next but did about four days later. 

     In the meantime, there had been some back and forth phone conversations with her doctor.  He personally called to let us know that he had been talking with her surgeon and they decided that a somewhat common procedure known as the fundoplication may not be ideal for Kerstin.  He went over three options with me: 1) changing her gtube to a gjtube 2) accept the rumination and watch for aspiration or 3) esophageal disconnect surgery.  Two of the three sound like another procedure, something I always want to avoid with my child.  Sometimes, some things are unavoidable or inevitable. 

     Her doctor was once again so patient with this mom.  He told me to talk things over with the family and let him know if we had any questions about any of the options.  Well, that was last Thursday, things were talked over with the family.  I was reminded how I fought against Kerstin even getting a feeding tube placed and quickly learned the ropes, she is thriving and otherwise healthy and doing well with her boluses.  Her getting a gjtube would not be too much different.  I even "phoned a friend" whose daughter has a gjtube to get a firsthand perspective.  Talking to another mom gave me comfort.  Everybody wanted to know when I would call the doctor back, I wanted to wait as long as I possibly could but, had a true gut instinct that he would call me soon and he did.  He called on Wednesday to see had we talked and if I had more questions.  I did and once again, he patiently answered each and everyone of them. 

     The plan now is to meet with GI, surgeon and nutritionist to get Kerstin's health plan, feeding plan and procedure in order.  Procedure...yes, another procedure!  This too will be for her good.  This means, I have more to learn in order to be and do the best I can for Kerstin! 

Smiling through it all! 

Resources: 
G to GJ -- Feeding Tube Awareness
G-J Tube Care --Cincinnati Children's 

More to come...

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...