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!

Medicaid in Alabama!

     Medicaid in Alabama!  Cuts to medicaid.  Lawmakers in the state saying it is too costly, they're not the only ones saying that, some citizens of the state say the same as the lawmakers that represent them.  Back in the Spring of this year, I was asked by my program director if I would attend a press conference at the state house on Medicaid.  She told me to prepare a 2 minute statement on how Kerstin has benefited from medicaid and how possible cuts would impact her life.  My first thought was 2 minutes to tell how a lifetime of much needed insurance has helped save my daughter's life and secondly, me, her mom, saying sharing some of our life story in front of a room full of reporters, law makers, advocates and strangers!  

     How was I going to do this?  As always, with Kerstin by my side and my older sister being our personal photographer.  I shared just some of what potential cuts could mean for Kerstin.  In order to get there, you'd have to know her story.  Kerstin has had 4 surgeries, 3 in one year, just a few years ago, she's had a few hospital stays, thankfully the last one back in May was not from an illness at the time but for a seizure study.  Aside from hospital stays, Kerstin requires numerous medicines and medical supplies to live...survive!  There are medicines for seizures, spasticity, along with her nutritional and feeding needs.  Without medicaid, it would be extremely difficult and near impossible to supply all of these needs for Kerstin on a part-time income.  
     I reported that the Pediasure Kerstin was on at the time cost about $11 per six pack, if you bought them in Walmart, that was just for the regular Pediasure not the specialized kind that she needs because of stomach sensitivities.  Pricing this on a site like Amazon, the cost is significantly higher, for a 24 pack, it is priced at $136.78.  That case would not last her a week!!   Because Kerstin is a growing child and her nutritional needs have changed, the new therapeutic nutrition she requires has changed as well, it is much higher in cost, $209.97 for a 24 count case.  Imagine having to pay those costs out of pocket and on a weekly basis just so that she could eat.  These costs do not even touch her medicines, or things like her feeding tubes, extension sets, syringes and diapers (wipes aren't even covered by medicaid).  Medicaid, makes all of this possible for Kerstin's survival.
     Along with all of her medicines and nutritional needs, Kerstin has a number of therapists, doctors and specialists.  These necessities are paid through medicaid.  Kerstin and patients on medicaid go to the same doctors, therapists, drug stores and use the same medical suppliers as patients with private insurances.  The thing that seems to be left unsaid is that, if medicaid is severely cut, that means that these same agencies, organizations and medical professionals may make cuts or leave the state altogether.  If that happens, my child is and people on medicaid are not the only ones without needed medical suppliers and providers.  These cuts could have negative and potentially harmful impacts throughout.  
     There are so many misconceptions out there about medicaid.  Some being that, the program is misused and that many people on it actually do not need the services.  I beg to differ, especially when it comes to my daughter.  As I said, in an earlier interview, she is a constituent of this state and needs all of the benefits because of her medical needs.  I am a part-time worker, part-time student, full-time mom and now a home school educator to Kerstin.  
     Just this month, Kerstin and I were interviewed again for continued input on medicaid in our state and it's potential cuts.  It is my hope that humanity is at the forefront of this story.  She was filmed at therapy, a much needed resource paid for by medicaid, then she was filmed at 'therapy'...her routine after therapy trip to Target (not paid by medicaid, lol).  

That portion has not been aired, dates to be announced. 

Reports:

WSFA :I am Medicaid' campaign aims to show lawmakers the humanity of what's at stake

Raycom News Network

Anniston Star