Tuesday, October 9, 2012

To thrive or not to thrive.

Thrive: 1. To grow vigorously; flourish

This has been the question at our house for quite some time.  Is King thriving?  Is King labeled "failure to thrive"?  What does that mean?  For King, failure to thrive meant that he was no longer on the growth chart for weight to length. I have a tendency to get swept away in the details of things like this.  I like to argue the facts and make my case.  The day that we went to Vanderbilt for our last weigh in, I had my case in hand and I was ready to argue.  King's Godmother came with us that day.  I prepared her for what I knew would take place.  It turned out to be one of the most emotional days of King's diagnosis.  Once I allowed myself to listen to what the dietitian and doctor were telling us I couldn't argue any more.  I began to feel selfish that I would put my thoughts and opinions ahead of my son's best interests.  I wake up every day praying that King and Emma Virginia will be afforded the very best in everything.  How could I deny King this opportunity to grow?

I think that allowing the feeding tube was a difficult decision because we had to admit that King was not thriving.  He was not growing vigorously nor was he growing.  We also had to admit the severe deficit that his pancreas had presented and would continue to present.  When we went for the requisite 9 month check up our pediatrician, Dr. Meredith, told Mama and I that King was sustaining the weight and length from 3 months prior; he said that King was essentially in his 6 month body.  At home I was watching King crawl and begin to pull up, babble, coo, and laugh.  I had already made the decision to allow the feeding tube when Dr. Meredith told us this stat from King's chart.  I knew that I wanted my precious son's body to withstand the vigor which he so yearned to display.

Everything worked in harmony.  The surgeons (we had several other surgeries in addition to the gastrostomy) worked together to schedule the surgeries back to back, the pulmonology clinic answered my zillion questions with certainty and compassion, Alex and I were on the same page, and King did not have a serious respiratory infection going into surgery.

Since I have a hard time letting sleeping dogs lie (no, I really do-I would much rather gaze into their eyes and squeeze them) I began to ask questions of anyone with decent hearing and the decency to listen.  I was able to find several innocent souls that I could pepper with feeding tube questions.  God bless the nurse that answered the phone at our local Gastroenterologist's office.  About 20 minutes in she finally referred me to a website that "would be increeeediblyyy helpful."  I see where she was going with that, but that website scared the hell out of me...there was a lot of Mad Mommy syndrome happening in that neck of the woods. After reading nearly 50 comments on the site I pictured the feeding tube to be a geyser overflowing with bile, popping out of it's designated space every other day, and creating a ring of fire on sweet King's belly.  King's pulminologist, Dr. Brown, was tasked with undoing the horror of that "increeeediblyyy helpful" website.  If Dr. Brown made a strong enough case I would probably eat Vienna Sausage. (I feel sick at the thought of the can.)  She really is "increeeediblyyy helpful"!

Guess what?  It wasn't so damn bad!  I sat in the surgical waiting room praying and cursing myself all at once to accept what was happening.  I don't know why I had such a hard time accepting the gastrostomy at first.  I like to be positive and own change.  That is how it works best for me. I prayed to Mary that she would help me to love this new part of my son's body, I prayed that I wouldn't wince when I saw his red flesh, I prayed that I wouldn't be squeamish and he would be able to tell, I prayed that I, of all people, would be able to teach him to be proud of all parts of his body, I prayed that I would be able to parent him as he got used to this "new body" and the new opening from which he would be fed at night, and I prayed that I would forgive myself for having to pray so hard.  Just before they called us back for the post-op consult I felt myself ease into this new role.  My prayers worked.  It was amazing.  I still had a hard time looking at the surgical sight at first; I was scared.  It took me a few days to get into the swing of things. In the meantime, Alex was a champion!  I also talked to another mother who I think the world of, Lauren Casevechia.  She promised me that it would get easier and that I would be an old pro in no time.  You were right, Lauren.  You'll never know how good it was to hear your voice on the phone that day:)  My dear friend, Meryl, allowed me to go on endlessly as I presented my spiel on feeding tubes and the other maladys which we were working to conquer. PS she is a nurse who doesn't need an extravagant explanation when it comes to feeding tubes or anything else.  Gee, Meryl, it sure helped to put it all in words:)

I can now honestly report that King's feeding tube, Walter the Schwillderbeast, and I are pals.  He and King get along quite well with only mild GI issues.  Emma Virginia has gotten to know Walter and approaches him with only slight trepidation which is quite the deal.  Emma Virginia fears nothing.  She takes the bull by the horns...no, literally, I feel sure that one day we will find her shaking a bull by his horns.

Ok!  I am going to stop "milking" the feeding tube story.  Gotta love a pun.

Oh, and also, if you are considering a feeding tube for your child please note that our experience has been NOTHING like what I read on that unhappy website.  I do understand that some of these issues can present at a later date and each case is different.  Currently, there is no volcanic field upon my child's stomach, there is no rebel feeding tube, and the ring of fire is nowhere to be seen.  I'll be sure to keep you updated if and when issues worth discussing arise.

Monday, October 8, 2012

Walter the Schwillderbeast

Who is Walter the Schwillderbeast?  I love nicknames.  I think they humanize anything-many times humans, but sometimes inanimate objects.  So, who is Walter?

Walter is King's feeding tube.  You may know enough to know that Walter was born to us on September 20 at Vanderbilt.  Alex and I talked before we went for the birth of our newest member and decided that we needed a better name than "feeding tube."  Not only does "feeding tube" sound lame and uncomfortable, but who wants to say that instead of Walter the Schwillderbeast?  Not I.

I imagined that Walter the Schwillderbeast would take up hours upon hours of time, scary oozy time.  Trust me, it is not like I am dancing through fields of lavender over here.  The days are pretty busy.  Surprsingly, Walter and I don't see a lot of one another.  We get a decent visit in the morning and at night.  Once I took him to the pediatrician's office for a look-see.  I saw way more than I was ready to see.  Dr. Meredith, our pediatrican, took Walter for a spin on the dance floor and I saw all beneath, around, the side...you get my point.  It was kind of like ripping a bandaid off.  I never would have put Walter to that kind of test.  He was up for the challenge though, and so am I.  King has gained a pound since Walter joined the fam.  I think we'll keep him. 

Don't you think that little King will rock the playground with Walter the Schwillderbeast?  I imagine that his friends will welcome Walter with open arms.  If not, they'll get the one two punch from me.  Who wants to get beaten up by a mom?

Thoughts upon thoughts

My very dear friend and Emma Virginia's Godmama, Win Daniels, told me to write a blog.  Here is the problem: I have my suspicions about blogs.  Does one say that they write a blog or post a blog or OHMYGOSH this is so confusing!!!  It is not that I don't enjoy a good blog read (?).  I just don't know (definition of know: to apprehend clearly and with certainty) about them.  In fact, in no way am I clear or certain about the details of a blog.  However, I am intrigued.

There is one blog in particular that can pull me out of any fog any day at any time.  A funny-as-hell girl we went to Ole Miss with has a blog that leaves me guffawing and snorting maniacally every time I read it!  Most ofen on the racy side and always candid, I relish a new post from her. Then there are the blogs written by superbly negative mothers.  Those scare the H-E-doubleL outta me.  I know that these women are being honest (maybe?), but they don't even pepper their stories with happy.  I see the blogosphere (blog lingo, I think) as a community.  It even comes with cliques.  People that have health issue blogs tend to read others like them, crafty bloggers like other crafty blogs, mad mommies like other mad mommy blogs, and so on.

Here is the issue: I am having a major identity crisis.  I love so many aspects of  life (yes, mine) that I can't chose just one!  Since I have convinced myself that you, dear reader, may have an interest in one or more aspects of my life, you get to hear it all.  I am glad that some of you will join me through happy, sad, scary, thrilling, interesting, inspirational times.  I plan to tell you about the funny, sad, scary, thrilling, smart, tiring, interesting things that happen or have happened in my life as well as my role as mommy, wife, daughter, friend, innovator, volunteer, learner, faux medical professional, exercise procrastinator, and so on. 

Sunday, September 16, 2012

A few of my favorite things...

This blog has been created for several reasons...one of them is to document the hilarious things my children say and do.  Don't we all need a little pick me up?:)

Belection (pronounced like collection)-things Emma Virginia finds anywhere and I do mean anywhere. these are proudly displayed on her dresser, my dining room table, the floor, my car, etc.
.
Brand New Muffins-you may think that I have given her an OLD muffin in the past. that is not it. she literally thinks that is what a BRAN muffin is...A BRAND NEW muffin. Her Nonie was the first to capture this gem of the Emma Virginia language.

Cream of Week-meaning Cream of Wheat. Are you noticing a trend?  Nonie and Emma Virginia have breakfast together daily. Nonie loves "Cream of Week" and "Brand New Muffins"

Story #1-Kenneth King in the NICU and Emma Virginia visiting the playground at TC Thompson Children's Hospital

"Nonie, can I go play down there [on the playground for children being treated at the hospital]? No, Emma Virginia, I think that is for children that are in the hospital.  Well, my brother has a tube." Apparently Emma Virginia felt that she would use Kenneth King's tube to her advantage;)

Story #2-Emma Virginia as Ambassador to the Imaginary

Emma Virginia enjoys the fruits of her imagination...to an overwhelming degree.  Currently she is married to Ciao and is stepmother to his two children, Caine and Mary Anne.  They have a large community of ninjas.  I think Ciao must work a night job because he is not home most evenings.  Emma Virginia has two snakes, Sally and Boy.  If you're nice, she'll let you pet them.




And into 2012...



This email was written on December 19, 2011.  God was with me as I wrote this email and when I received the phone call from our Pediatrician, Gary Meredith. Of course I was shocked to hear that we had a hurdle to overcome, but with the love and support of friends I knew that I could summon the courage.  If you know our story then you know the outcome, but this is how it all started....


"Hi Friends,
Thank you for your prayers while Kenneth King was in the NICU.  They worked!  He is home with us and we are enjoying his warmth.
Today, when I was on the phone with Allie, our Pediatrician called to let me know that the Cystic Fibrosis test came back posititve.  What a shock!  We need your prayers again...they have proven to be such a support!  Many times this test proves to be a false positive.  We are hoping to have Kenneth King retested tomorrow at Children's.  The next test will be a sweat test which is more definitive. Kenneth King will have to produce enough sweat to be tested.  Alex and I are unaware of CF genes in our families...we've been on the phone a good portion of the evening. 
Our List for Santa This Year
-We get an appointment tomorrow at Children's for the sweat test
-Kenneth King can produce enough sweat
-The results come back quickly
-We get a negative this time and a conclusive false positive for Cystic Fibrosis
Thank you all for being a part of our lives...you managed to hold us up over the last weeks.
Love,
Ginger"

65 Roses



This is one of the first things that made my heart smile when I learned about Kenneth King's diagnosis.  I hope it can bring some peace to your heart as well.

By the way www.cff.org is an amazing resource!!!

http://www.cff.org/aboutCFFoundation/About65Roses/
About 65 Roses®

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.
Weiss Brothers Then
The Weiss brothers, Richard, 5; Arthur, 7 and
Anthony, 16 months.
After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.
He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

Updated 09/19/06

Our Introduction to Cystic Fibrosis

This email was written January 5 after Kenneth King's first appointment with Dr. Ledbetter.  Mama had a lot to learn at this point!!!


Hi Family!

Sorry to get this out so late, but we didn't get home until 7:00.  Kenneth King's appointment lasted from 1:30-5:00.  Mama and I met with Dr. Ledbetter, head of the CF clinic, Charity, CF nurse, and Melissa Moser, FNP in the CF clinic.  Alex was able to be on speakerphone and listen to the conversation, but the clinic gets horrible reception:(  He was there in spirit!

Kenneth King has maintained his weight at 6 pounds 13 ounces.  He was weighed by the genetics counselor two weeks ago and was the same weight.  Since he has pancreatic insufficient CF this is not surprising.  Dr. Ledbetter stated that he was glad that we could give Kenneth King a nutritional boost now because it will make a tremendous difference in his outcome.  He is still 19 1/2 inches...his fingers, toes and feet must be 50% of that..longest I've ever seen!

The two mutations that Alex and I passed to Kenneth King mimic one another which means that he will present with "classic" CF symptoms.  This also means that if we can successfully treat one of the mutations then we are that much closer to golden!!  Delta F508 is the most common form of CF and is the most studied.  Clinical trials are getting very close on this mutation.  There are studies currently being conducted in Israel for W1282x seeing as it is the most common in the Ashkanazi Jewish population.  I asked if a study is done in another country if it is accessible for US citizens.  Dr. Ledbetter answered that the CF community shares and shares equally.

We learned that the Chattanooga CF clinic is part of the Vanderbilt CF clinic, but will be affiliating with the UT medical center soon in Knoxville.  There is a loose group that works together in this region.  Dr. Ledbetter has close connections with doctors at the Memphis CF clinic, Birmingham CF clinic, and Knoxville CF clinic.  He knows all about Mississippi and worked in Jackson for a time.  It was nice to make a connection there.  He is even knows my childhood pediatrician'
s son!

We will still continue to see our regular pediatrician especially when sick seeing as sick children are NOT allowed at the CF clinic.  Dr. Ledbetter also advises against CF patients convening for fear of superbugs become monsters!  Dr. Meredith, pediatrician, will work with Dr. Ledbetter in treating Kenneth King.  We will return for visits at the CF clinic every 2 weeks gradually reducing to every 3 months.  This course of treatment depends on Kenneth King's reaction to the treatments.  Our first follow up visit will be January 24th at 9:00 AM.  Baseline blood testing will be done at this appointment.  We are also waiting on approval from BCBS to administer a once monthly RSV-neutralizing antibody until RSV season is over.  The link is as follows: http://www.rchsd.org/ourcare/programsservices/g-h/homecare/rsv-synagis/rsvfaqsforparents/index.htm.
He will have a repeat Sweat Test on February 6th at 9:00 AM.  Dr. Ledbetter sees this as further clarification that we do have CF.  Emma Virginia will have a Sweat Test on Monday at 9:00 AM to determine if she requires further testing.  SOP states that she should be tested since her sibling has tested positive.  She is NOT exhibiting symptoms.

I asked about phase III clinical trials for which Kenneth King might be eligible.  There are none currently.  Clinical trials include adults initially and then filter down to young children.  There are not any trials for Kenneth King's mutations that will be marketable in the near future.  However, Dr. Ledbetter does believe that Delta F508 may have a treatment by the time Kenneth King would be eligible to take it (in 7 years). http://www.cff.org/research/ClinicalResearch/FAQs/VX-770/ This is a link to some information about a company, Vertex, and VX 770, the treatment that it is researching.

I asked if there are positive or negative things to look for and what to do if negative things are noted.  A serious cough that lasts more than 2 weeks or a puffy belly are two examples I was given.  CF patients are expected to cough because that is how they release the secretions.  Eventually, Alex and I will need to administer respiratory therapy by clapping our hands on Kenneth King's chest or thumping his chest.  There are also other therapies (such as a vest) that can help at a later date.  It has not been suggested that we start either of these things currently.  One very positive sign would be weight gain within two weeks.  He is expected to gain an ounce a day with the enzymes we started today.  More about that in a second...

Dr. Ledbetter suggested some tips to maintain health which is 75% of the battle.  Limit exposure to crowds as much as possible especially during cold and flu season.  Have all family vaccinated for the flu especially anyone who visits the home for extended periods.  If you are coming to visit please get vaccinated.  Wash hands as often as possible and use hand sanitizer as much as possible.  Do NOT allow him to be around anyone that he does not have to be around that is visibly ill, sneezing, coughing, etc.  One thing to remember is that a cold to us can be deadly to him.  He is not allowed to be around any smokers because we want to be sure he heads into the eye of the storm with the healthiest lungs possible. Dr. Ledbetter is not concerned about pets.  The bacteria that Dr. Ledbetter is most concerned about is explained at this link http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa

Today we were given Creon which is a medicine used to treat people who can not digest their food normally due to pancreatic insufficiency (the pancreas does not make enough enzymes).  Kenneth King did an awesome job of taking his first round of medication!!!  He will take the enzyme before he nurses every time.  The capsule is opened and the beads are sprinkled on applesauce (just enough to "deliver" the beads).  We can use a wide mouth syringe or a very small baby spoon.  Tonight Nonie gave him his applesauce by spoon and he did great!  He will also be given a Vitamin A, B, D, E, and K plus zinc once daily by dropper.  We'll wait until tomorrow for that one...it has been a long day:)

Each person we spoke with stressed how available they were to their CF family.  Calls are returned promptly and we will have access to any of the staff at the CF clinic.  The staff includes a social worker, dietitian, Nurse Practitioner, Pulminolgist, Nurse as well as support staff.  I felt very confident about our meeting today!

I was told time and time again that CFF.org is the best place to go for research. I was also given a CF "manual" of sorts. 

Alex, I hope I can speak for both of us and I think I can.  We are doing our very best to control the things we can and pray that God takes care of the rest.  We are going to celebrate this beautiful child the same way we celebrate Emma Virginia-wholeheartedly!  We will do everything we can to stay healthy so that we are around when a life saving treatment is made available.  Every life faces obstacles at some point...we know Kenneth King's ahead of time...and will fight like hell to overcome it!  We hope that you will join us:)

So, raise your glass to research and good health---lots of love,

Ginger

Friday, January 27, 2012

Pear Tree


My married name, Birnbaum, literally means pear tree.  I chose PearTree for the blog name because it carries beautiful symbolism.  The pear symbolizes longevity because the pear tree generally lives a long life.  The pear tree is also known to symbolize mankind's salvation.  In some places the pear tree symbolizes a female baby's birth due to fruitfulness and longevity.

It should be noted that I created this blog under the name PearTree in January of 2012 shortly after my newborn son was diagnosed with Cystic Fibrosis.  Initially, in the midst of the devestation, I imagined that I would write solely about the trials that were being presented.  I kept the blog private until now (October 2012).  I am happy (and relieved) to say that this will NOT be a blog with the narrow focus of trials and tribulations.  That would be an injustice to the many blessings and happiness of life.