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...

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

Side lying.

     Once again, it has been some time since I've made a post with updates on Miss Kerstin.  Well, she has been doing well.  Since the last post she has had another round of Botox for her wrists.  Just in the past two weeks or so, her occupational therapist has mentioned talking with Kerstin's doctor about possibly doing tendon lengthening surgery to help with relaxing her wrists.  That part of this journey will be closely monitored.  For now, we will talk about dear old side lying.  As I am writing the boss, is wanting to be a bit fussy about side lying and she's only been down for about 5 minutes so far.  She has a few more to go. 

     Last month at her PT visit, therapist suggested "side lying" to help with another cumbersome place...the tightness of the right side of her neck. Hence, the neck support and her always tilting her head down and to the right.  Sometimes Kerstin is okay with it and others. like right now, she grumbles about it.  However, she stops long enough to watch tv for a bit and starts right back.  It is suggested to keep her in this position as long as she tolerates it.  One day toleration was well over an hour.  We will see about today.  

     A little about side lying.  Most probably equate this position with pregnancy however, side lying can be very beneficial in some forms of sleep apnea, it can help with some clients/ patients with dysphagia and numerous other conditions.  Case and point, miss Kerstin, diagnosed with Cerebral Palsy and now needs side lying to hopefully help strengthen and lengthen muscles in her neck, further helping with her head control.  More information on side lying can be found here and here.  

     Kerstin is to be positioned onto her left side, with her head and spine aligned, eventually lowering her head in order to stretch and lengthen the muscles in the right side of her neck. Check her out in these pictures.  

Side lying.  She's ready sometimes and others not so much.