I Get it!

     This past Saturday, I was fortunate and blessed to be able to work at the local special needs expo.  I was able to leave Kerstin in the comforts of home with her aunt Regina watching her for the day.  So, not only was I working, I was able to get a little respite, much needed.  As always, when Kerstin is with her aunts, I check in to see how things are going with my little boss.

     Regina kept me abreast on what was going on throughout the day.  When the day was done, I called to chat with them and see if anything was needed.  During our conversation, Regina told me that being there all day with Kerstin showed her how busy a single day can be. This was not the first time she's spent the day with Kerstin somehow, she really felt the love of being Kerstin's full time caregiver.  She said it felt almost nonstop at times, by the time she prepped food, got the Kangaroo bag filled and pump ready then the medicines, it was time do something else.  Keep in mind, Kerstin's medicines are staggered throughout the day with her having to take some every four hours.  She said keeping Kerstin on schedule while doing laundry and other things, it felt like she would sit for a few minutes and have to go do something else.  

     "I get it, Mattisa!", to hear those words seemed exhilarating, because, someone took the load off me for a while and knew I needed it off!  I cannot explain to you how overwhelming it was to hear those words.  As parents of a child with extra care and needs, we often hear how special we are, how special our children are, and how it must be so hard.  Or, can you recall the looks of pity, "Aww, bless her/your heart!"? It is welcome relief when it is gotten.  It is understood.  

     We are in no way looking for pity, Kerstin is as bossy as they come! In fact, she was paid for having to be cared for and not the other way around.  How bossy is that?  I had never heard of the "babysitter" having to pay to provide a service! Kerstin, setting another trend.  

     Let a family member or friend know that you really get it.  "How can I help?" May not be answered because I rarely answer when it is asked of me, just know that understanding the flow of a single day and jumping in without disrupting that goes an extremely long way!  I'm thankful for the supportive circle around us, when things seem heavy, they load is quickly lightened. 


More to come...

Coming from the heart!

     We've all seen what has been in the news as it pertains to healthcare.  The United State House passed their version of a healthcare bill back in May that will take away the healthcare of millions of Americans. The bill would drastically cut Medicaid, which is the sole form of health insurance for so many.  In other cases, it is a secondary insurance for many families that receive their health insurance through work and other forms. Now, we had the Senate republicans release what they are calling the Better Care Reconciliation Act that will be just as devastating to so many people and not just those relying on Medicaid.

     Everytime I think about the potential cuts to Medicaid and the affects it could have on not only my child but others as well, I'm reminded of what Jim Carnes of Alabama Arise said as it relates to Alabama.  He said that the state itself can be considered to be on Medicaid; if you have doctors leaving the state because of cuts.  When that happens, my child isn't the only one affected by that pediatrician that has left but, the one that is on Blue Cross is as well...as it may be the same doctor. Lets look beyond the doctors and look deeply at the overall affects.

     As you all may already know, Kerstin has a feeding tube, and it is the only way she gets nutrition, and her medicines to live.  All of her medicines, feeding tube(s), extensions, syringes, nutritional formula, gloves, diapers, wheelchair, bath chair, hand splints, neck support(s), AFOs, therapists, specialists, glasses, dentist, ophthalmologist,nutritionist and so much more is covered by Medicaid.  Completely covered!  If it was not for Medicaid, these costs would be devastating on our family.

     Recently, I had to do some paperwork after changing medical suppliers for Kerstin and the forms I needed to sign came with a complete breakdown of the cost of her feeding supplies.  Per nutritionist, Kerstin is to have 3- 8 ounce boluses of her nutrition and 1- 6 ounce bolus; the formula comes in 8 ounce containers that cost $9.33 per container or about $224. 00 per case (she gets 5 cases per month), her bolus syringes cost $650 per month, the feeding extension costs $100.00 and the 'button' (feeding tube) costs $300.00.  These costs DO NOT include any of Kerstin's medicines.

     Now, as titled "Coming from the heart!", I am coming from my heart with this entire post.  We've all heard and some may have even said things like "Medicaid shouldn't be given to the lazy", "these people need jobs" and so much more.  Well, I'm not lazy, I can't be, I have a daughter that is completely dependent upon me for her daily living care, even on days when to quote a line from "The Color Purple Musical", 'I wanna sit and do nothing', I can't.  I can't take on a full time job outside of our home because of her needs and care.  I have a part-time job and I am also continuing my education online.  Kerstin is a minor child on Medicaid...know any jobs for her?

     Kerstin's life depends on Medicaid.  Without it, she would not have had the medically necessary surgeries she's had, including the g-tube surgery that I fought against, out of my own fears.  Kerstin is thriving and surviving because she gets the much needed care provided through Medicaid.

     It's not too late to make your voice heard about healthcare!  Call, text, write, tweet and do it again!

#IAmMedicaid

Manic Monday

     Today was Kerstin's first day going back to school after being home for a week with respiratory issues.  Last week was really rough.  There were many nights that sleep was almost nonexistent.  Kerstin was given breathing treatments and CPT around the clock.  The girl is a tough cookie!  She is my trooper!

     "Manic Monday" was exactly how our morning started off!  First thing, I had in my mind that today was the day that her Baclofen increased again.  That was NOT the case, the day is tomorrow!  She will once again increase, this time going to 1 and one half tablet, crushed and softened for g-tube administering.   I am so glad that I looked at the calendar on my cell and saw that the actual increase is tomorrow.  

     Second, after her bath this morning, I went ahead and switched her Scopolamine patch.  She wears one behind one ear for three days and then it is switched to the next ear and on and on.  We get to school and she's having therapy, therapist is working on some neck stretches and there is NO patch behind her right ear!  I can only assume that I attached while her skin was still too damp.  

   My issue with both of these instances is that insurance paying for the meds too soon is always tricky.  She will run out before time.  That's another issue for another day.  I am just glad that she was able to go back to school today!  Even if she did doze off in class!  

  



More to come...

Ever Growing Vocabulary.

     I must say it again, having a child with "special needs" causes the parent to learn so much and learn it quickly!  You would be surprised at the amount of information that is giving to a family in a single doctors visit, an IEP meeting or at a therapy appointment.  The things and information I used to take for granted, I can no longer.  

It's been a long week, she hasn't been feeling well.  So, seeing this smile return made my night!

     In the not so distant past I had heard of Baclofen (BAK-loe-fen) and Scopolamine (which I keep wanting to pronounce sco-lop-a-meen instead of skoe-POL-a meen).  Never knew that one day, Kerstin would actually be recommended for them both.  That's where we are on this journey now!

Baclofen:  Used to treat children and adults with severe spasticity, and to help with the treatment of physical and occupational therapies.   Kerstin's PT suggested we see her newest doctor, who is a doctor of physical development and a long background with Cerebral Palsy.  Both her OT and PT sent separate letters to Dr. Law suggesting Baclofen to aid in their treatment.  

     Kerstin can be very rigid at times, making it difficult to dress her as well as perform various therapies.  Also, she becomes so spastic, that her kicking becomes so hard.  It is hard to see your child go through things like that!

     The second medicine; Scopolamine patches. The little patch that was featured in the Wordless Wednesday 09/10/14 post. These little patches are often used to prevent nausea and vomiting even motion sickness.  So why this patch for drooling?  Scopolamine or "transdermal patches" have been found to be very effective with controlling the drooling in patients that have traumatic brain injuries. 

     No medicine comes without side effects.  Both may cause dizziness and drowsiness.  The Baclofen causes frequent urination while the Scopolamine causes dry mouth and throat, as well as dry skin (it dries liquids) and we were told to make sure that Kerstin does NOT get too hot and has plenty of liquids!  Needless to say, you won't find us out and about too much in these final days of warm weather!

Lets not forget what happened on this day 13 years ago!

"Raising Kerstin"

Maybe I should say "Raising Mattisa", I'm growing each day, learning new things...and yes, I am pulling that title from the movie "Raising Helen".  Not many similarities but I thought it would be a great topic, especially after this past week. 

Kerstin was admitted to the hospital on Tuesday night!  I could not believe what was happening!  Monday night she started sneezing quite a bit, Tuesday was full blown congestion, then around 7 p.m. she's warm, temp was 99...frantically I give her a fever reducer.  I know what comes with her fevers, I wanted to stop that.  It did NOT work, she started having a seizure that came with vomit (hopefully you're not reading this while eating).  The seizure did not last long, it was 3 minutes, which is an eternity when it's your child. 

So, we continue to go through the nightly routine.  I was about to start Kerstin's continuous feedings when she becomes fully involved in yet another seizure and this time, it seemed like there was no stopping this one.  I called my sister for reinforcements on administering the Diastat while she's completely involved, this was 4 minutes into the seizures.  She gave the okay but, before I knew it she was also at my home, to assist, along with other sisters and even my mom!  I'm so thankful for that!  

Twelve minutes after the Diastat was given, Kerstin was still seizing and her temp, taken behind her ear, was reading 106.3, I said, "this can't be right!"  A rectal temp was taken and it read 104.1!!  Kerstin's neurologist was called and the on call doctor said she needed to get to a hospital ASAP since the Diastat was not working and her temp was extremely high.  

We arrive at the ER, vitals were checked and her temp was still a very hot 104.1.  This had never happened, where her temp continued to rise or stayed high, even after a fever reducer was given.  Nor, had she continued to have seizures especially after having the Diastat.  

Making a long ordeal short, Kerstin had a cloudy x-ray, showing early pneumonia, causing her to be put on oxygen.  Her Keppra levels were not at a range her neurologist thought it should be.  In order to control seizures, the meds have to be present in her blood and apparently the level was too low to keep the seizures at bay. So, you guessed it, that was increased, the dosage is now 
doubled. 

Kerstin is home once again, thankfully.  She has quite a few follow up appointments coming up.  The story of our life!

Kerstin must have known she would be going home this day, she slept so peacefully!

It is always good to know that there are so many people that care, one of her former teachers (adoptive grandma and great friend) sent this card to her the day she came home!

More to come...