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!

Pump No More!

     After about two weeks of not continuous, overnight feedings, we talked to Kerstin's clinical nutritionist at Children's Hospital.  Since, she has been doing fine with only taking gravity boluses throughout the day, it is officially okay to discontinue her continuous feedings!  I am so happy and very thankful!  She is continuing to make strides and is doing well!  No more beeps in the middle of the night because she may be laying on the lines.  Don't have to worry about her accidently pulling the ports open and not being fed.  No more phantom beeps in the middle of the day...hopefully!  

     Yay for Miss Kerstin!  Another step on our journey of Growing With Kerstin! 

My sweet, silly girl!

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...

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!