Weight, what?!?

     The latter part of 2017 proved to be very busy for us.  In October, Kerstin had her g-tube changed to a gj-tube.  That was followed by a very unexpected stay in Children's Hospital.  However, since October and the continuous feedings she has been on a constant climb in pounds.  For the longest after getting the feeding tube Kerstin's weight had been fluctuating between 75 and 80 pounds.  She was healthy and her nutritionist was pleased with her progress.   

     Things were going well until they were not so good.  Kerstin started to have these smacking instances along with vomiting which would lead to gastro issues and her aspirating leading to aspiration pneumonia.  All of that lead to a few illnesses and hospital stays last year.  For the most part, and thankfully so, Kerstin has been pretty healthy with no major issues, just allergies lately.  

     The past few months, at various follow up appointments, whenever she has been weighed, Kerstin is no longer in a fluctuating phase on this feeding tube journey, she has been on a steady incline.  well over 90+ pounds.  Normally this may not be thought of as an issue but when you are immobile and assistance is needed for everything, that kind of sudden weight gain can be a bit much.  So, simple changes have been to her continuous volumes made with the hopes of keeping Kerstin in her range of 80-85 pounds. 

     We will see where these changes take us...

More water intake!  Drink up.

More to come...


It's happening so quickly!

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...

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

Cerebral Palsy Awareness Day...not just a day!

     I hope you have on GREEN!  Today is World Cerebral Palsy Awareness Day!  What does that mean?   Awareness to those that don't fully understand Cerebral Palsy.  Awareness to let the world know that more and more people are both with Cerebral Palsy and countless others are diagnosed with it every day.  What do you know about Cerebral Palsy?  

     Don't worry, Cerebral Palsy is not contagious!  Cerebral is of or pertaining to the cerebrum of the brain.  Palsy or palsies are muscular conditions that are defined by tremors of the body parts.  There are three types of cerebral palsy:  spastic, which causes muscle stiffness and difficulty with movements;  athethoid, causes involuntary movements and ataxic causes problems with depth perception and balance.  So, there is no catching any of those. 

Cerebral Palsy info

      For so many families, mine included, Cerebral Palsy is not just a term, awareness day is not just like any another day, it's life.  We live and battle each day.  These battles include those stiff muscles, seizures, wheelchairs, countless doctors, therapists, specialists, medicines, hospital stays, surgeries and many sleepless nights.  I haven't met a parent of a child with special needs that don't understand what I am dealing with and they have faced some of the same battles or they are about to.  Connections are so important. 

     Along with the struggles and the battles, there are immeasurable joys that come along with raising a child with special needs.  I know that raising Kerstin has changed my life in ways I will never be able to fully explain.  I am more patient, having to speak up for her has bought out the advocate in my...that voice that will speak for those that cannot do it for themselves.  I will type/write too!!  I am not only Kerstin's mom, I'm her advocate too!  She has forced me to grow and become a better person. 

My reason!

     So, as the world is made aware of Cerebral Palsy, I encourage you to follow some of the links in this blog post.  Read up on Cerebral Palsy and gain a better understanding of our loved ones living with it each day! 

Cerebral Palsy: Kids Health

World Cerebral Palsy Awareness

My first blog post:  Life!

More to come...

Changes...again!

     It is rare that Kerstin has a visit to Children's of Alabama without something changing.  Change is good, right?  I skeptically say "Yes", when things seem to be going in a good direction.  So, we were back, for another follow up, our second trip in less than a month.  Cannot forget that she has another...in less than a month.  

     This was a follow up with her pediatric surgeon...g-tube follow up.  Beautiful day, beautiful weather (a bit warm, already).  I must say, that I am very thankful for safe travels to and from.  I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.  

     Happy to report that Kerstin is continuing to gain weight.  In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule. 
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs!  I have previously vowed to myself, that Kerstin was NOT getting a feeding tube!  I had heard so many stories from other parents along the way, stories I won't even share.

     At her appointment yesterday, I realized that this surgery has saved my daughter's life.  I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted! 

     I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around!  I know her doctor, we see him every six months.  Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions.  I was assured that we would not leave the hospital before I had information and training.  That training came in the form of pop-ups on the room TV and one on one with his nurse. 

     Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one.  She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube.  No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly!  But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.  

     Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours.  Her water intake is gone up from 60 mL per bolus to 120 mL.  Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while.  She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained.  I think she will eventually work up to not needing the pump at all overnight.  Fingers crossed!  So, for now, she will have a very wacky schedule for a while.  One that I will have to get very used to.  As with everything we're gone through and had to endure, we always conform.  

Received some great products in the #UnivoxBox

One of those products used to write a note to my HERO!  #PenItFFwd

*Products received for free from Influenster, so that I could try and review them.*

More to come...

Unexpected Happenings...One Year Later!

Spring Break is here once again.  This year on the Monday of the break, we were at home.  No scheduled appointments to Children's Hospital to see a neurologist, or to have a swallow study done.  That's exactly what we were doing this day last year.  

March 25, 2013 a day/date I will not forget for a long time.  
That is the day I was told that it was no longer safe to feed my child the only way we had used for 11 years.  We could not leave the hospital.  I still cannot describe the shock, the hurt and the fear I felt that day.  That week she spent in Children's is chronicled here.  

Kerstin at Children's Hospital-Neurology--March 25, 2013

A year later, Kerstin's weight has doubled.  She has outgrown pretty much all of her clothes.  We are in a slow process of building a new wardrobe for her.

Kerstin-both taken March 28, 2013 

I will say this about our feeding tube journey;  I never thought that I would have to learn to feed my daughter via a g-tube.  I was always scared of them.  The unknown, the horror stories I had heard just had me completely afraid and unwilling to consider it until I had NO choice at all.  Now, my daughter is thriving!  As previously stated, her weight has doubled.  She is still easy to get sick with viruses and things from "germy" school, but not as often.  

Kerstin--taken March 11, 2014

I'm learning about the g-tube everyday, a year later.  I have become more comfortable with using it, just not changing it, I'll leave that to my sister for now.  As with everything, it is a learning process.  We are always growing and learning!!

More to come...

G-tube journey

March 28 will be one year since my little one has had her gastrostomy tube or G-tube placed.  Since that time, Kerstin has double her weight (pics will come in an anniversary post)!!

When I say that it has been a journey, that is an understatement.  I must say that I have yet to change her port/g-tube.  I am too queasy!  I always get my sister (who is a nurse, thankful mom here).  I don't know if I'll ever have the nerve to ever change it.  Seeing that little "unnatural hole" on her belly.  I know it's there for health reasons but, I don't know...

Since we've become g-tube aware...I think just about everything imaginable has happened when it has come to g-tube boluses and the continuous feedings overnight.

Here we go:

I'm doing a bolus, Kerstin starts to laugh at something on TV...Pediasure is everywhere!  That happens with sneezing, coughing even gas, contents come back like an erupting volcano!!

I start a bolus, the extension line is open and nothing is moving!  WHY?!?  The cap is on the tip of the syringe!!!

How about a newly changed port yet, the bolus is moving really slow, what is wrong?  I panic and call the doctor!  The nurse calmly tells me to give her a little room temperature Coke and let it stay in the line for about 30 minutes then flush.  That simple?  Yes, the boluses moved much better.

Getting all set for continuous feeds, meds are given the pump is started...ten minutes later it's beeping!!  The line is NOT opened!!!

Or, the next morning after the continuous has ended, she's given her morning meds...I can not for the life of me get her extension to disconnect from the feeding bag!!  I had the strength of Wonder Woman and twisted it on really tight.  Come morning, it wouldn't budge.  I had to throw it away.  Thanks to the collection of medical supplies we have on hand, she has a stash of them.

I've left home before and left her water bottle...quick stop at the nearest store to buy her a non-refrigerated bottle!

I can not forget in the beginning, we are not home, once at school and once on a day we were just out and about, no extension set to feed her!!! Thankfully we weren't far from home.

I know I'm forgetting something.  All that to say, I was originally afraid and completely devastated that MY daughter may need a feeding tube, then getting to the point of not a maybe but, she has to have it!  I am thankful for the journey, she has gained weight, and she hasn't been as sick as often as she used to be.

The tube/ port and the extensions HAVE to be kept cleaned.  There's no getting around that!

Resource

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...
   

   
   

Unexpected happenings...

Unexpected indeed!  I had every intention of posting an update on last week of Kerstin's casts being changed and her neuro appointment.  My, how things change.  Last Monday, we went to Children's of Alabama for two appointments and ended up being admitted and she underwent another surgery....all in the span of a week.

So, casts were changed on March 18, appointment went well, ortho doctor was please with her surgical sites, even though they were not a pretty site for mom to look at. Her casts can come off on April 9 and doctor cleared her to return to school after spring break ( April 1 ).


The following Monday, we are back at Children's for an appointment with Kerstin's neurologist and to have a swallow study done. This began the day that I won't forget for a very long time. Things went well with her neurologist, he changed some seizure medicines, so we were to start the process of weaning off one and increasing the dosage on the new one.  The day was a beautiful day, sunny, yet very windy.  We had plans to go to the appointments and get to the nearest Target and walk around, as her treat for being in the house so much, not being able to go to school and mingle with her peers.

 It didn't work out that way.  We left neurologist's office, went up stairs for the swallow study...Barium mixed goodness =((   My sweet girl did not pass the study!! I was so hurt, so upset, I didn't even know who to be upset with and why!  The team attending her study wanted my contact numbers to call me once doctors were able to look at her study.  I had no idea that by the time we left the waiting room and were walking across the crosswalk to go home, my cell would ring!! Urgent call!  The speech therapist stated that the study had been reviewed and that they needed to admit Kerstin to ensure that she was able to get the proper nutrition.  She wanted to know had I left the hospital because the doctors didn't think it would be safe to continue feeding her the way she had been being fed.  I lied!! The tears were burning in my eyes as I looked at my daughter, smiling and looking at the trees ( from the crosswalk windows), I told the nurse that we had left the hospital.  She was so patient and caring, she told me that she knew we lived a few hours from the hospital and she didn't want us to get home and have to return to the hospital.  I told her we would come back inside.

Here comes the whirlwind!  Once back "inside", as we're walking to the admitting office, I could barely see and I was so overcome with so many emotions...I could no longer control the crying!!! The tears and the sobs escaped, I knew I didn't want my sweet girl to see me like this, so I stayed out of her eyesight. The nurses, bless them, they couldn't hold back the tears either!  Not sure if someone told the 'clowns' to come visit her room, but they came in soon after she was admitted!

We were admitted, get this, her room this time, was two doors down from her room after her ortho surgery. Now, in come different doctors, specialists, anesthesiology  nutritionist, nurses...I had to get out pen and paper to write down names and titles.  The TV in the room has notes popping up to watch this video on seizures, watch this video on gastrostomy tube care... I must say they make sure you are knowledgeable about why exactly your child is in the hospital.

An IV is started to get fluids into Kerstin.  Later in the day, a doctor comes in to explain the first step they're going to take.  Placing my princess on an NG tube, then she would have and upper GI study done to see how things flow and to determine g-tube placement.

Day 2:  NG tube is placed!  Her nurse, Justin, was so thoughtful and caring!  He came in earlier to tell me that they were going to place the tube, and that he thought it may be a little easy on mommy if I left the room for the procedure!  My sister, whose a nurse as well, had warned me the night before, she said " I know how you are, and it can be a bit hard to watch it done."  Justin told me to go downstairs and get breakfast and the he and another nurse, Amanda, would keep an eye on her until I got back to her room.  They did, and when I reutrned my daughter has a feeding tube in her little nose. Hard for this mom to look at!

Day 3:  Upper GI study.  Determined that the NG tube was placed properly, Barium laced Pedisure was flowing in the right direction.  She was rolled from side to side, on her back, on her side and back again.
Room filled once again with doctors, nurses, neurologist, surgical team, anesthesiology   Yes, g-tube will be placed!

Day 4:  Surgery day!  One month to the date of her ortho surgery, my daughter is about to go for yet another surgery. So, we go down for the procedure...meet yet another team of really nice doctors and nurses, all confirming that "we're going to take care of Kerstin this morning,,,"  While enjoying a nice cup of coffee, I get a call to come to the desk, I quickly pour out the coffee, rush to the desk...Doctor is there, he says "surgery went well, she's in recovery, do you have any questions for me?"  I did. I didn't know what to ask first, can she get in the tub, once her casts are off?  Will she be in a lot of pain? Is this permanent? I have no idea how to feed my child through a g-tube!!! Dr. Martin, another reassuring person at the hospital, calmly answered my questions and told me that we were not leaving the hospital until I had training on how to, what not to, what to do if/when...

Day 5:  Only clear liquids via her g-tube, Pedialyte and water, starting with smaller bolus feeds and increasing at each feed.  Her midnight feed  was not pleasant, she was so uncomfortable and grouchy.  The numbness was wearing off and her belly was full to the rim with clear liquids. It took a while to get her settled, and later in the night/morning more of the strange lip smacking from Missy.  Took a video to show her doctors.  Later determined that she was in fact having a mild seizure. Neurologist informed me that when children start growing and meds are changed, if the new one is doing it's job you will see mild seizures in your child. He also said that if the child does not go into full convulsions, then the new meds are working properly. Catch 22? Not sure!  He told me that as a parent you don't want your child to have seizures at all, TRUE, but you also don't want them so medicated that they are non-responsive and out of it most of the time, TRUE.

Day 6:  Bolus feeds of Pediasure...mommy gets g-tube training!  Kerstin is able to get bolus feeds of Pediasure and they will be introduced slowly, increasing at each feed.  So far, so good.  Thank God!  It is also day 6, when mommy has to get away to the meditation room in the hospital.  I'm Thankful to God, that surgery went well, I'm also thankful to Him that we're going to make it through this too!  So, we get a visit from her surgeon's nurse, she is here to train me on some basics, and what to look for, what to do if it pops out, how to take the extension tube off, how to lock it, etc...  Putting the extension tube on, made me feel so uncomfortable, she reassured me that if I gently hold the "button" and feel the little click, it will not hurt Kerstin. Okay!  More training to come for mommy...I have to know how to replace the tube; Pray I can handle it.

Day 7: Easter Sunday! How did she do overnight? Fine! We are able to go home!  Kerstin was so happy to see the trees and traffic, I thought she wanted to watch her TV as she normally does when we're riding...she was looking out the window with a beautiful smile on her face.  No more hospital walls!! We are heading home!! The view was nice from the 10th floor of the Benjamin Russell Hospital For Children, but it was time to go!

We did go on strolls just to get out of the room, nothing like being outside of the building altogether!

After 7 days 6 nights in the hospital, we're back home, trying to get used to new routines!  I know with all my heart we will make it!  Things will get easier each day!  This is all going to be for the best for Kerstin.  She will thrive, she will grow stronger, she will be just fine!  I thank God, for all of the doctors, nurses, and everyone we came in contact with.  They were really nice and caring, so understanding and patient. It made our stay more tolerable.  I've even nominated some for the hospital's Daisy Award, hope they're considered!