It Has Been Real 2013

Posted on January 2, 2014 by Andy Chrestman

Because Team Chrestman spent the first day of 2014 glued to the couch doing absolutely nothing productive, we relay our Happy New Year’s to our blog followers one day late.

For those of you who have followed this blog for some time, you may recall the concept of the “cool shit jar.”  For our new readers, you can read about it here.  For the lazy among you, the cool shit jar was essentially our way of willing 2013 to be a better year for us than 2012.  The idea was to chronicle all of the “cool shit” that happened during the year and go through it at year’s end.

To be honest, we were not the most consistent about it.  And perhaps not surprisingly (given the maturity level of many of those we associate with), there were several entries into our jar that were far from appropriate.  Therefore, here are a few highlights of our cool shit:

 January 2: Kohl’s eye surgery went very well, and he started to make better eye contact almost immediately.

January 12: Kohl celebrated his first birthday and several friends and family members came over.  Kohl tasted cake and had a great time.

January 13: The fact that one day can be positively awful one year and 1,000 times better the following year. (Friday, January 13, 2012 was the day that “the shit hit the fan”.  While 1/13/12 was full of heartbreak, 1/13/13 was filled with happiness.)

January 27: Kohl and his dad got to go to the Barkus parade for the first time

January 30:  We came across a study that uses cord blood stem cells to treat brain damage.  A newspaper article profiled a little boy who had brain damage similar to Kohl’s.  He was significantly delayed up until he had this stem cell therapy at around the age of three after which he began rapidly improving and hitting all of his milestones.  There is hope.

March: CeCe came and stayed with Kohl and his parents for over a week.  Her vampirish sleep habits allowed Mom and Dad to get some much-needed rest

May: Kohl showed he is truly his mother’s son by becoming more vocal.  He also began speech therapy sessions with an outstanding speech therapist.

May 11: Kohl’s mom got to be a part of one of the more creative marriage proposals in recent memory, which involved friends, giraffes, glittery posters, and of course beer. No pressure on a fun wedding, Chris and Melissa.  Just saying…

June 14: Kohl graduated from the treadmill to the pacer.

Jan – June: Because Kohl’s mom had a seizure in December 2012, she was not allowed to drive for six months.  Gentleman/scholar/semi-professional LSU football commentator Chris sacrificed his Friday mornings to take Kohl and Mom to physical therapy for 830a.  Did we mention he did this for 6 months? We truly believe we have some of the best friends on the planet.

June 29: Team Chrestman did a private tour with the brewmaster of Covington Brewery.  This was a Christmas present for Kohl’s dad.  Good friends + cold beer + learning cool shit about the brewing process = damned good time.

July (approximately): Someone anonymously drew this picture:

August 1 – 3: Team Chrestman stayed at The Turquoise in Orange Beach, Alabama.  They had an incredible time.  Nana seriously asked Kohl’s dad if he was on steroids and Kohl imposed his will on both the Gulf of Mexico and the lazy river.

Fall 2013:  Kohl “Badass” Chrestman walked a full lap around the PT department in his pacer for the first time.

September 2013: Our good friend Clare graced us with her presence and she came bearing the best cookies known to man that we are pretty sure are sprinkled with crack cocaine.

September 2013: Good friends Colleen, Alex, Owen, and Tamanna came to play!

November: Kohl got a new “stander” that helps stretch out his legs and accustoms him to being upright.  He seems to genuinely enjoy these standing meetings.

Thanksgiving 2013: Team Chrestman had a delicious Turkey Day in Lake Chuck and were able to visit close friends. Baby Anderson was so excited that he came a few days early in order to meet Team Chrestman!

December 13: Kohl rolled over almost completely by himself.  Quite a feat considering his brain damage and how well-endowed he is.

One of the best lessons from 2013 is that no matter what the previous year held, the next year can always (and in some cases will hopefully) be better.  Appreciate the past, live in the present, and look forward to the future.

Here’s to 2014.



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Last Piece of the Puzzle

Posted on December 22, 2013 by Andy Chrestman

I know everyone will find this hard to believe, but Team Chrestman is not perfect.  We are fallible, folks.  Just like our beloved Sean Payton who thinks it’s a good idea to call double reverses and screen passes on third and long in crucial divisional games, we too have made our mistakes.  So yes, we will admit that we followed some questionable medical advice recently and prolonged Kohl’s War on Food by several months.   But we forgive, we forget and we move on.

When Kohl got his G-tube earlier this year, we decided to forgo a procedure called a Nissen Fundoplication, which is typically done when patients are given G-tubes.  It is when the top part of the stomach – the “fundus” – is wrapped around the lower part of the esophagus. It reinforces the lower esophageal sphincter, which prevents food and stomach bile from coming back up and thereby eliminates vomiting and spitting up – common side effects of feeding via a G-tube.  (If you are wondering whether the term “sphincter” as used in the last sentence and in every medical explanation given to Kohl’s parents made Kohl’s dad laugh, the answer is a resounding yes).

Before we got Kohl’s G-tube, we were told that children with neurological impairment can have very bad side effects from Nissen Fundoplication procedures and we were strongly advised against doing one.  We accepted that at face value and decided that going through with the G-tube without doing the Nissen was better since if it turned out that Kohl ultimately needed a Nissen, than it would be easier to get one ex post facto than the latter.  It was a calculated decision.  But it was the wrong one.  If we could go back in time, we would have dug a little deeper and gotten a better understanding of what kinds of complications were involved, etc.  But alas, we live and we learn.

And so it was that Kohl had his sixth procedure and third hospital stay of his young life this past weekend and got a Nissen Fundoplication as an early Christmas present.  All things considered, it was a painless hospital stay.  Mom, Dad and Kohl’s BFF Floyd the Frog were with him the whole time.

Kohl’s BFF, Floyd the Frog, provides some shade for Kohl’s much-needed siesta.
Floyd continues night watch

We believe that this will be the last piece of the puzzle.  Goodbye, War on Food.  You lose.



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Let the Culinary Adventure Begin

Posted on October 22, 2013 by Andy Chrestman

I have frequently resisted the temptation to write about Kohl’s feeding problems on this blog for risk of boring you to death.  But the temptation was there because Kohl’s travails with all things gastronomical have probably been the most stressful and most immediate concerns for Kohl and his gang.  But Kohl just had a surgery that will hopefully spell the beginning of the end of the pain, discomfort and insomnia that Kohl’s feeding issues have caused.  First, indulge me to relate a brief history of Kohl’s war on food.

Like many infants, he had reflux issues which caused stomach pain and caused him to spit up frequently.  Such issues were made worse because of the damage to his brain, which controls every function including digestion and the way food moves through the stomach and intestines.  Beginning about his eighth month, things took a turn for the worse.  He started to reject breast milk, and we were forced to switch to a truly foul-smelling formula with a name that mercifully escapes me, lest I have flashbacks of its stench.  This worked for about four or five months, but then his body must have finally realized how vile this substance was and started rejecting it too, spitting and/or vomiting it up with reckless abandon.  Many sleepless nights and GI appointments later, we chose a soy-based formula.  He was sold on soy for awhile, but having concluded that soy was for sissies and could potentially cause man boobs, his very manly stomach rejected it too.

Over time, this led to the beginnings of an oral aversion.  As his little body continued to reject various formulas, he made the connection that this little thing on his face called a mouth caused him a lot of pain in the form of daily vomiting.  He basically said, “you know what, mouth, f&!k you, we’re done.”   While this was a positive cognitive sign, it was outweighed by negatives because it got to the point that he was sometimes only drinking eight or nine ounces per day and dropped way off the growth chart – putting himself behind in yet another developmental milestone.  To add insult to injury, we had to start squirting his medicine down his throat which would cause him to choke and turn purple half the time.  Not only was this a tortuous exercise for mom and dad, it made the war Kohl was waging against anything going in his mouth much worse.

This was a stressful time, and we tried every option on the table before finally deciding to go forward with the gastrostomy tube or “G-tube.”  (Those who have been following this blog may be familiar with the description of Kohl’s G-tube through the majesty of ’90s hip hop).  It is a plastic tube that has an external button on one end where food is injected and the other end runs directly into the stomach.  The G-tube was miraculous because as soon as Kohl was getting enough calories, he started growing normally again and, perhaps most importantly, he finally started sleeping through the night.  Also, apparently adopting his mom’s penchant for becoming “hangry,” his disposition showed tangible improvement once he was eating enough.

Another battle was on the horizon though because even though the G-tube ensured he was getting his calories, it eventually made his vomiting even worse. When we eat naturally, our mouths send signals to our stomachs that prepare it to receive whatever we happen to be eating or drinking.  The stomach expands and prepares to receive the nutrients.  When getting nutrition via G-tube, however, food is inserted directly into the stomach, which catches the stomach off guard.  The stomach reacts by trying to dispose of that food, which is when Ralph and Huey come to visit.  As a result, most G-tube surgeries are accompanied by a second procedure in which the top part of the stomach is wrapped around the esophagus which, in effect, prevents the stomach from regurgitating anything.  In Kohl’s case, however, we were strongly advised against doing this because children with neurological problems tend to have serious complications with it.

Fast forward several months, and vomiting became an all-too-frequent part of the little fellow’s life.  A day where he did not spit up or vomit at all was rare, and days where he only did it once were considered a win.  So with the ultimate goal of weening him off the G-tube, we decided to move forward with his latest surgery which was replacing the G-tube with a “gastrojejunostomy tube,” (GJ tube).  Instead of going directly into the stomach, the GJ tube bypasses the stomach and empties directly into the small intestine, significantly reducing the likelihood of vomit.

Kohl now gets all his calories overnight through a pump that connects to his GJ tube and slowly administers his food while he is in dreamland.   During the day, Kohl will delve into the worlds of butternut squash, apple sauce and various pureed delicacies.  Ultimately, we hope he will make amends with his mouth so that he can get his nutrition exclusively from food and enjoy one of life’s simple pleasures.

Let the culinary adventure begin.



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