Eat Happy!

Eat Happy!


**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

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Monday, July 30, 2012

“Slippin’ Nissen:” Failed/ Slipped Nissen Redo and Hiatal Hernia Repair

Almost 7 months ago to the week, Ian had his Nissen Fundoplication and G tube placement. Back then, Tom and I knew the basics about fundoplications, but would hardly call ourselves experts.... today is another story. While we still know very little about surgical details about these types of repairs, we know worlds more now about the procedures and their pros/ cons, and even side effects and risks.

Unfortunately, as I have stated in previous BLOGs, Ian had several poor side effects of his original fundoplication. The surgery itself did what it was supposed to, but we traded one problem for another. Initially, we were under the impressions that fundoplications were all the same.......... boy were we wrong!! Apparently, fundos come in all locations and in varying circumferences. Ian’s first fundo was a full 360 degree wrap around the esophagus called a Nissen, named after the man who created the procedure. Ian’s new wrap is called a Toupet.... also named after the narcissist who invented the wrap. ;) Fundos seem to be called “Nissens” like tissues are all called “Kleenex.” Weel, if you educate people to believe all tissues are Kleenex, when they find someone offers them an alternative Puffs Plus, you are all of sudden surprised that it has a different feel and maybe even different ingredients and purposes. This is how we realized we had been a little “douped” on the Nissen thing.

Well, today, Ian had his Nissen not necessarily repaired, but undone, repaired, and then turned into a Toupet wrap. The surgeon at CHOP, Dr. Thane Blinman, spent almost 4 hours taking care of Ian in the OR this morning. Taking down the current wrap takes the longest. He made sure to keep everything in place and “reattach” things that needed to be. The first surgeon was a little “scalpel happy” and was a little more aggressive than he would have wanted them to be.

Ian’s surgery was laparoscopic again and has only 4 incisions plus the g tube site, which is awesome..... the previous 4 are now small scars. He will have a total of 9 small scars which will fade over time. Fortunately, we did not need to relocated the G tube or do open surgery.

CHOP: Dr. Thane Blinman

The “undo” was needed due to the failed wrap. In Ian’s case, this is called a “slipped Nissen.” Many things can cause a slipped Nissen such as trouble swallowing or poor suturing, also improper wrap placement...... Ian had none of these, OF COURSE! Ian’s failure was from the retching due to the post-prandial hypoglycemia he experiences after the initial gastric surgery. I have referenced a few BLOG sites about these effects and procedures.

BLOG post-prandial hypoglycemia links

Bottom: Slipped Nissen

When a Nissen “slips” it is almost like a napkin ring. The way the surgeon explained it, the napkin ring sits at the top of the junction of the esophagus and stomach. Since the wrap for a Nissen goes all the way around the esophagus, it encircles the top of the stomach. As it “slips,” the napkin ring slides down the stomach, leaving part of the stomach no longer underneath the wrap. After this happened, Ian then proceeded to herniated about 40% of his stomach up through his diaphragm.... creating a hiatal hernia. When Ian “slips,” he slides all the way! Why do something if you’re not going to give it 150% right?

Dr. Blinman took down the Nissen and reattached the ligament connecting the esophagus to the diaphragm, called the phrenoesophageal ligament. After bringing the stomach down and repairing the hernia, he placed a new 270 degree, 3/4 wrap, called a Toupet. This new type of wrap is what we originally thought was a “partial Nissen” or a “3/4 Nissen.” Sorta like Puffs would be a “partial Kleenex.” As we all know this is not the case, knowledge truly is the key.

As I was sitting in surgical waiting today, I found myself wondering about everything we did for the previously surgery, it’s very easy to think...... well, should we have done this first? Did we do the right thing? And the answer is always “yes” for us. We did the right thing to help Ian at the time. It kept food inside him and allowed him to grow. Unfortunately, we may not have done the GOLD standard for him..... but we did what he needed. We feel VERY VERY fortunately to live within 180 miles of one of the smartest medical professionals I have ever met. Ian’s surgeon has been treating him since December when we relocated hospitals for the awful retching and dumping syndrome.

After all has been said and done.... so far..... we feel very well informed, educated, and prepared to make the decisions we have, and the ones for us to make in the future concerning Ian’s current conditions and troubles. Hindsight is always clearer and it is never wise to look back questioning yourself. I once heard a great quote that said.

“Don’t look back.... it’s not the direction you’re headed.”

Right now, Ian is recovering from this morning and enjoying some wonderful morphine and toradol. He does seem to be in a lot of pain and the meds are doing the best they can. He wants to sit up and kick his legs around and move. No surprise there! We have been watching dvds and spending lots of time snuggling in his big boy hospital bed.

As I sit here now, seeming like a hospital veteran, I realize that I find myself torn between two very different populations. I can easily identify with the first timers, scared and anxious about being away form home and being in a hospital environment....... but also feeling like a part of the families who are “frequent guests.” While we don’t see the same families each time, it is easy to tell which families and children are newbees and which are town residents by now. We feel very fortunately to be part of both these groups. It allows us to remain empathic to Ian and to the other children, but also gives us the extra strength and tolerance to plow through whatever medical procedure needs to be done....... something that new families may not have reserves to draw from.

Being in the hospital is never fun, exciting, or the vacation spot desired... but I have to admit that having your sick child in the hands of lots of professionals that you trust 24 hours a day is very reassuring. It may sound like we LIKE having Ian in the hospital.... which we don’t...... but sometimes, it is EXACTLY where we want him to be. Sometimes what you need isn’t something you want. Knowing someone is there to help you that can tackle from any medical standpoint you give them takes a HUGE load of your shoulders as parents. I’m sure a lot of my fellow “repeat offender” families would agree.

Both good and bad, we have experienced a lot of hospitals..... 6 I think to be exact. I can safely say that this is by far #1 on my list. If I knew this is what was here and I lived a 6 hour plane ride away...... I would have rented an apartment here months ago! After all the misdiagnoses, the residents that we “taught” (not all of them..... some were fabulous!!), and the never-ending explanations we gave which simply ended in a confused look and a “wow” exclamation... it is nice to be somewhere we are finally understood.

Tonight the hospital’s formula room..... yea, that’s right, the “FORMULA ROOM” simply whipped Ian diet together in a snap. No hospital other than CHOP that we have been to has ever had a formula room. Even more, the other hospitals watched us like we were mixing this crazy potion for Ian to drink of the next 24 hours. We did not have to cart special formula around or Rx additives....... it was already here in the formula room. Our nurse told us we were “guests” and would not have to do any of those things unless we felt the need to “pitch in.”

After having Ian be treated like the kid way out in left field, that nobody has any clue of what to do with, it is refreshing to be taken seriously. We never feel like “outsiders” and Dr. Blinman’s reflux clinic has always listened to what we had to say. It’s nice to feel like part of a team, a team that works together and isn’t shooting in the dark.

As I pull together my final thoughts for the night, I think of everyone all over the country, and all over the world that view Ian’s BLOG and think, pray, and send healing light to him everyday. I cannot imagine what it would look like if we all gathered together. The strength of all those people banding together gets us from one day to the next. A while back, I did finally get my “preemie strength” tattoo. It is an anchor, which sits atop my left collarbone, over my heart. Each day I see it in the mirror and feel encouraged. Some days are harder than others, as any of us can say. However, looking at that anchor, I am flooded by everyone and every thought and prayer. It gives me hope when the days seem dark, and carries me through when nothing seems to provide comfort.

Thanks to each of you for being a part of that. As the tears begin to well up in my eyes, I am now going to go watch my beautiful baby boy sleep....... and probably cry a little more at his peacefulness and bravery. I strive to more and more like him everyday!

Much love to all!

Monday, July 9, 2012

Outdoor Fun

Last month Ian had a great trip to the park.  He enjoyed walking on all the playground equipment, no surprise there!!  It was a very hot day so we only spent about an hour playing.  I made sure to give him a few big boluses of pedialyte to hydrate him.  He especially likes the swings.  My sister Amy and I enjoyed playing on the see-saw.

Staying cool with my shades

Amy and I having childhood fun

Free Swinging

Walking the see-saw with Pap

On July 4th, Ian had lots of water fun.  He enjoys playing with the sprinkler.  He does want to run through it, but likes trying to catch the water.  He also loves his little pool.  We use it here at the house for him to splash him.  At first we were worried about at cold water..... but with it being over 100 degrees here in northern Virginia lately, it only takes about 20 minutes to get warm..... and only a couple hours to become a spa!
In has started swimming lessons and likes to kick and splash.  He practices more in the tub than at the YMCA, but he likes it all the same.  He will be taking lessons every Saturday throughout the summer.

Reaching for the Sprinkler

Walking through the grass in my swimsuit...... except I have little legs ;)

4th of July pool party

Ian loves to play outside.  We even got a water table for him to play with on the deck.  He loves to pour the water out onto the deck with cups and scoops.  He does splash around in the water too.  His bath toys have quickly become dual-purpose toys!

Children's Hospital of Richmond

Last Friday, we ventured to Richmond to visit the Children’s Hospital there.  They have a very highly recommended day patient, feeding therapy program there.  It took us 2.5 months just to get the clinic evaluation appointment.  The program has a combination of many therapists that help the children with feeding and other skills.  The clinicians include nurse practitioners, psychologists, dietitians, speech language pathologists, feeding therapists, social workers, occupational and physical therapists, case workers, and MDs to help coordinate a comprehensive treatment plan for each child.
The program is 6-8 weeks long.  The therapy sessions are Monday-Friday each week.  Ian will have 3-4 1 hour sessions everyday.  Since the program is hours away, we will be staying in the area for the 8 weeks.  Unfortunately, the program has a 6-9 month waiting list!  They only treat 5 children at a time and the average stay is the 6-8 week time frame.  The clinicians were wonderful about giving us homework and things to work on at home prior to the program.  They also have scheduled two follow-up appointments with Ian while we are on the waiting list.
Ian’s feeding therapy here in northern Virginia is on hold until after the herniated Nissen is repaired.  Once we move beyond that, we can incorporate the recommended skills from Richmond into his therapy here.  Ian will also begin working on a sensory diet while learning the new feeding skills.  By exposing Ian to more textures and consistencies, he can learn to accept more as non-threatening... very similar to his sensory processing disorder with his hands and feet.
The therapists in Richmond also noticed that Ian is fairly “floppy” in his trunk and shoulder muscles.  While he has control of them, he is low-tone in those areas.  They suggested we begin working with a physical therapist to start building more muscle and strength in those areas.  Unknowingly to us, jaw muscles for chewing and speaking stem from core and shoulder strength.  Thankfully, the rehabilitation clinic that Ian attends for feeding therapy also offers these services.
The program is very much focused about behaviors and skills.  It uses positive reinforcement to integrate feeding skills into the child’s environment.  The program also ignores negative behaviors during therapy, so as to help extinguish the behaviors.  This will include vomiting and gagging/ retching.  The reason these behaviors are ignored is that many children will learn the gagging, retching, and vomiting will buy them an immediate ticket out of eating.  Some child use this to cease therapy sessions.
While the program does not follow the principle of creating hunger to encourage eating, meals are decreased as the oral intake increases.  There are several feeding programs in the country and most function in one of the two ways: behavior or hunger.  Both are very successful programs, depending upon which one the child responds to best.  With my psychology background, I tend to agree more with the creating and extinguishing behaviors as opposed to creating hunger.
The program protocol involves presenting utensils and food for a count of 1-2-3.  If the child accepts the bite, sip, or utensil, there is great praise and reward.  Refusal of acceptance is redirected by following the child’s motions to continue presentation.  The rules are presented to each child prior to the beginning of each session, even very young children.  It is very much the experiment of Pavlov’s dog.  As positive reinforcement is linked to feeding behaviors...... behaviors increase in order receive praise and happy activities.  At times positive reinforcement can be confused with bribery.  Bribery however, does not always include positive reinforcement for the one in control of the situation.  In this program’s circumstances, the administrator takes control of the therapy session, but is not the one being rewarded.
When therapy sessions begin, administrators use statements instead of questions.  The therapist would say “Ian, take a bite” present it to his lips, and count to three.  Comments such as “Ian, would you like a bite of cookie” are not used.  Therapy sessions for Ian right now at home last about 10 minutes.  When the timer is done, Ian is praised for his effort and therapy ends.  However, if he shows interest, he may eat or snack at other times of the day.  Keeping therapy sessions and other eating times separate are very important.
The rewards that Ian receives are whatever is appropriate for his age.  Toys and videos seem to be the most popular. One importance they stressed was to make sure toys and videos, or whatever he is being rewarded with, only come at therapy sessions.  If we were to use on of his favorite Elmo toys, he would quickly learn not to perform behaviors during therapy sessions in order to play with him...... simply because he could hold out until a later play time to have him.
The program also offers fun time and support and relaxation for the families.  Art activities and music are available to give children time to play, along with many other choices.  The families are able to attend weekly support groups, speak with counselors, and even receive relaxation such as massages throughout the course of the program!

We are hoping that the time will pass quickly and we can begin feeding therapy “boot camp” with Ian.  Until there can be constant consistency, I’m not sure he will progress as we would hope.
One medical concern they will be following is the likely-hood of visceral hyperalgesia.  This is a condition where the nerves sense pain when they would not ordinarily.  The nerves in the viscera (lining of the stomach and so forth) are hyperactive.  As the stomach contracts to empty and food is moved through the intestines, the nerves in those areas sense pain.  Therefore, normal gastric emptying and digestion feels painful.  The nurse practitioners feel as though Ian has this condition to some degree.  They mentioned that by treating the blood sugar and dumping issues, along with gastric emptying regulations, and digestion aids, the visceral hyperalgesia has also been managed.
This condition is something I researched greatly prior to Ian’s CHOP treatment back in November.  I have always felt that this may be playing an issue.  If necessary, after evaluation and progression, medication may be introduced to help relieve these symptoms.  The medications used are the same ones used for other nerve and muscle pain perceptions.... such as Neurontin and Lyrica.  Hopefully we will be able to work around these medications.  In the meantime, we will continue to work with Ian at home.
From a non-medical standpoint, Ian is getting smarter and smarter each day.  He identifies lots of animals, shapes, and colors and understands more in order to be a better listener.  He is an excellent helper around the house.  His curiosity grows each day and he is always into something.
He has the brightest smile every morning when he wakes up and seems to be the “freshest” then.  He is much more a morning person than an evening guy..... very much like his father...... and unlike me!!  We are still using the comfylift bed for him and he loves sleeping on it.  He always looks so peaceful sleeping.  It fits perfectly in his crib in his room so he didn’t have to change the environment.
He enjoys sticking food with forks and scooping things with spoons.  he even puts empty utensils and food to his mouth.  But then they immediately go back to the plate.  Sometimes he sucks the juice out first, like watermelon.
As we work with Ian at home I will update everyone on the successes and setbacks..... hopefully more of the former!
The link for the program is:

Tuesday, July 3, 2012

Changing Ian's G Tube Button

Since there are many curious minds about how we insert, change, and remove G-tube button... I decided to post a video of the event.

Unfortunately, it is usually an "event." Button changes for Ian are rarely a *pleasant* experience. Ian h as very fair and super-sensitive skin, and while not inflamed or problematic, his stoma (G-tube *hole*) is almost always a little more sensitive and red. Tonight we changed his button and he was VERY tired.

Ian's site was not inflamed or *infected* in any way, just uncomfy. I know it isn't a pleasant video, but I wanted anyone interested in knowing, to see how we do this.

As a fair warning... This video does show medical sites and procedures that some may find uneasy to watch. Please be assured that we do everything we can to make the process quick and as painless as possible for Ian.