Eat Happy!

Eat Happy!

Disclaimer

**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.**

**Resources are listed to support information associated with this BLOG. These resources support copyrights and are permissible. Information presented outside of this BLOG needs to incorporate resource sites to maintain legal status.**

**This BLOG and its information may be shared at no request; photographs will need permission from the blogger.**

Tuesday, January 31, 2012

The BUG!!

As we made our way home from CHOP on Thursday, we exhaled a big sigh after a weekend hospital admission for bleeding, a trip to the ENT, and a CHOP visit all in a week’s time.  Ian had no doctors appointments scheduled for a whole week.  Well, I guess he got bored...
I don’t know where, when, or who it came from, and I don’t care... but this stomach virus that decided we needed something else on our plate can go back where it came from!!  Friday morning, Ian had some retching, which I found odd.  It seemed to subside and I thought nothing of it.  I had noticed a small glitch in his medicine schedule and thought that must have been the reason he responded that way.
As the morning went on, Ian started having some seriously frequent poopy diapers.  By noontime, I had changed at least 6 of them and he had 3-4 more retching episodes.  At this point, I was puzzled.  I was under the impression that barium caused constipation, not diarrhea.  We had given him a OTC laxative Thursday to help him pass the barium.  (I by no means wanted to go through the impaction issue we had with november upper GI series!)  Naturally, I attributed the diarrhea to the laxative.
As the day went on, I learned that may father-in-law had a stomach virus.  As he was keeping us company at the ENT on Wednesday, my mind immediately shifted.... we have, the BUG!
Since Ian has the fundo, he does not vomit, he retches, and occasionally spits-up.  The retching and the diarrhea were his way of telling us he had the stomach virus my father-in-law had.  While he was violently throwing up, Ian was heaving instead.  We kept a close watch on him and as the night time fell, he had soiled at least 24 diapers.
Overnight, we started noticing an increase, and a decrease in peeing... Ian hadn’t peed in almost 12 hours.  Now, I was really concerned.  A phone call to the pediatrician indicated that we should travel to the ER in the morning he doesn’t pee by morning.
Saturday morning came, and so did my turn for the stomach bug!  Ian was continuing to have diarrhea and no peeing, and I was now violently throwing up in my own pitiful pile of solitude in my bathroom.  Tom was forced to take Ian to the ER alone.  He was feeling fine and Ian was not making any progress.  So off they went...
My mother had come to visit Friday night and Saturday.  Tom and I had plans to drive around and look at homes on Saturday.  Well, the BUG had other plans!  Now, as Tom was taking Ian to the ER, my mother was helping take care of me.  I had a bad feeling about this!
Ian was given IV hydration at the ER.  His blood sugar was 39 and his bicarbonate was very low.  The bicarbonate is the hydration level viewed in the blood.  He was given glucose sugars and fluids to hydrate him and stabilize his blood sugars.  The Pedialyte we had be supplementing his meals with at home was not enough.  Around 4pm, Ian was discharged and Tom brought him home.
No less than an hour after they arrived home, as I lay pitifully in my bed trying to sleep, Tom rushed by me, anxious for his turn to share the bug.  As I listened to him vomit violently in the bathroom, I was both thankful and extremely concerned that my mother was there.  I knew she would be next.  It seemed to have a 2 day incubation period, and lasted 24-48 hours once the vomiting set in.
While Tom and I took turns in the bathroom, my mother played with Ian.  While having nausea and diarrhea, he seemed to be in much better spirits than we were.  AS the evening came, my mother was able to get Ian to bed.  She was now staying the night, which she had not planned.  Tom and I were unable to care for Ian and we needed her help.
Throughout the night, I seemed to be on the mend.  By Sunday morning, I was feeling ambulatory and moderately close to alive again!  Tom continued to lay on the bed like a slug and moved only to visit the bathroom.  My mother was still doing well and Ian was still having diarrhea!  Come mid-morning, my mother headed home and Tom and I were joined by my father-in-law, now feeling better, for help.
Oh, and did I forget to mention that Sunday we were scheduled to have an Open-House to sell our home!  It was scheduled from 1-4 and we were determined to pull it off.  As my father-in-law played with Ian, and Tom continued his slug-like behavior, I readied the house.  After getting everything put back together and Lysol-ing every single nook and cranny of the home, we packed to leave for the afternoon.  Tom crawled into the car with a pillow and a bucket and we left.
The afternoon consisted of traveling around while Ian and Tom slept in the car.  My father-in-law and I walked around in the fresh air and did some shopping.  Later in the afternoon, we even took Ian to the play area at the mall.  As the Open-House drew to an end, we headed back home.  Tom hadn’t vomited all day and I thought things were looking up...
Ian’s diarrhea was not stopping, and I noticed again, that he had not peed.  I called his pediatrician, again.  She advised us to return to the ER.  This time, it would be me taking him, as Tom was almost done perfecting his slug behavior.  My father-in-law traveled with as Ian received another IV for hydration and sugars.  This time, his sugar was 54... low, but better than 39!  He once again showed low bicarbonate and was dehydrated.
At this point, the doctors wondered what he had and decided to admit him.  We quickly discovered that we were back on the floor from September when the surgery was done.  We were with our old friends again.  The doctors, nurses, child life specialists, and staff all began saying hello to us in the hallways!  Ian settled in for the night and slept well.  He continued some diarrhea, and a few cultures were taken for testing.
The 2 suspected culprits were Rotavirus and Clostridium difficile (C diff).  Rotavirus, of course, is a virus... but C diff is a bacterial induced diarrhea.  Since Ian had recently been on the Omnicef for chronic sinusitis, they were concerned.  As the night when on, they continued to stick Ian to test his blood sugars and gave him continuous IV fluids.  I slept the night with Ian and my father-in-law returned home.  Meanwhile, Tom has vomited again and is now living amongst the slugs!!!
As Monday morning came, I was feeling back to myself.  Tom was feeling moderately alive, and Ian seemed to be doing better.  As I made the phone calls to family to give them the updates, I learned my mother had fallen victim Sunday night and was now working on perfecting her slug-like behavior.  Monday brought good changes for Ian and we slowly began to introduce his feeding again.  The Rotavirus and C diff tests all came back negative and the final diagnosis was simply, THE BUG!
Since Ian’s GI issues are so sensitive and compromised, he was not able to “kick the bug” as the rest of us had.  His gut needed time to rest and heal before re-introducing his food.  We continued to watch Sesame and Baby Einstein in the hospital room, while Tom was finally able to venture out into the world again.  Since his car was no longer running and needed replacement (a Friday morning discovery!) he headed to the dealership for a new car, a used, very cheap, new car!
Since it seems like when it rains it pours, now seemed like a good time to do this.  I stayed with Ian in the hospital and Tom met me here later in the evening.  During Monday evening’s phone call updates, we learned that my mother-in-law and brother-in-law had joined in the fun as well.  We were dropping like flies every day-and-a-half or so and it had run through almost the entire family.
As Tuesday approached, Ian seemed to be feeling even better.  He was tolerating more feedings and wanted desperately to wander around.  The doctors decided to stop the IV fluids since he was feeding normally again.  We took Ian to the playroom and drove him around in the little buggy that he so loved playing with back in September.  We even drove by the ceiling tile that he decorated the last time we were here.  Ian’s old room is only 2 doors down from the room he has this time.
As today, Tuesday, goes on, things around continuing to look up.  We came home this evening and hoping we won’t have to be back at a hospital anytime soon.  Between the pre-visit, MRI, blood sugar testing, bleeding episode, ENT, CHOP upper GI series followup to confirm the hernia, and the BUG, Ian has been in 2 doctors offices, 4 hospitals, 2 with admissions, and had numerous tests run, along with about 2 dozen IV and needle sticks!  The kid is sooooooooooooo over this!  He cries whenever someone even walks into the room.
We are glad to get him home and enjoy some down time.... although, I thought the same thing last time, and the time before that.  We still have our fingers crossed that someone will buy our home and hoping for some good news.......... lots of good news........... soon please!!!!!!

Herniated Nissen.......... CHECK!

January 26, 2012


As things died down from the bleeding episode, we headed back to Philly.  While the bleeding was not attributed to his fundoplication surgery, the Radiologist did see a hernia.  This was not was the radiograph was meant to look for, but happen to stand out.  The surgeon at CHOP said it was a good find for him to see it on the radiograph.  Hernias are usually confirmed by upper GI tests, using barium.
The surgeon at CHOP wanted to confirm that this was not a misread on the radiograph, so back to CHOP we went.  The doctor wanted to make sure that the fundo had not torn and caused the bleeding.  When we arrived for the appointment, he too agreed that the bleeding incident was from the Nasonex... we get it...... IT WAS THE NASONEX!
Unfortunately, Ian does have a hiatal hernia.  He has herniated the Nissen surgery that was done September 2011.  It is a small hernia, but part of the stomach has come through the “wrap” that was done and is now above his diaphragm.  A side view during the upper GI series showed it very well.
While the surgeon does not think it had anything to do with the bleeding episode, it does present a problem.  Currently, Ian is not have any reflux symptoms from the loosened fundo wrap, nor does he have current dysphagia (painful swallowing).  Because of this, he does not feel as though it needs surgical correction at this time.
He believes that this hernia is from all the retching Ian did before we were able to get his blood sugar under control and help the emetic (vomiting) reflex in the brain with Benadryl.  He also believe that the hernia was probably beginning back in November.  If you’ll remember, right before Thanksgiving, Ian spit up for the first time past his surgery.  This means loosening, and can mean problems.  An upper GI was performed and no hernia was seen.
However, as noted by the surgeon, the November upper GI series was done only by inserting barium through Ian’s G tube to see if it would come up past the surgery.  This time, in addition to inserting barium through the G tube, some was syringed into his mouth as he could swallow it.  This allowed the Radiologist and the surgeon to see both angles.  The doctor said this study was carried out better than the previous one.  He believes that if the November study had been done this way, we may have seen the hernia beginning.  The surgeon at CHOP that requested the November study was not the surgeon we see now.  The request may have been different from our current surgeon.
Since Ian is currently not having any issues with the hernia, it can wait.  The surgeon did tell us that in a few months, or  couple years, it will need to be repaired.  He said if reflux symptoms return or it is causing pain, then it may be sooner.  In order to fix this hernia, the surgery needs to be “undone.”  The surgeon will go in and undo the wrap created in September.  The hernia will be corrected, then, he will “re-wrap” the top of the stomach around the base of the esophagus, again.  However, this time, will be different.
As this is not the same surgeon who did the Nissen in September, the surgery will be a little different.  According to the surgeon at CHOP, may studies and papers are published about the various types of fundoplciations and their side effects.  Nissens are 360 degree wraps and the stomach goes all of the way around the esophagus before it is stitched.  This time, the surgeon will be doing a “Toupet.”  This type of wrap is a 270 degree, or a three-quarter, wrap.

Here are images for the Nissen versus Toupet wraps:



According to these various papers and studies, Toupet wraps are as efficient as Nissens, and have fewer side effects.  Ian’s post-prandial hypoglycemia issues were mostly the result of gastric surgery.  It is called “late-dumping syndrome.”  Ian’s “sugar-stat” was unstable before surgery, but the gastric surgery exacerbated it considerably!  Apparently, this is a more common side effect of gastric surgeries than most people think.  It contributed to most of the retching Ian did.  Seeing as though we were told by several GI doctors in our home area that “retching syndrome” was a gastric surgery side effect and it would simply go away after a few years on it’s own, I was not pleased to hear this from CHOP!  Thankfully, all of Ian’s feeding regime monitoring to control the blood sugar had helped this side effect tremendously!!!
So when Ian’s surgery is redone, a 270 degree wrap will be completed.  I was also given the impression that this will help swallowing and eating in the future, as the esophagus will not be as “tight.”  As we left the office, we imagined our only issue over the next few days would be some constipation from the barium... boy, oh boy, were we wrong..................

A Pit-Stop at the ENT

January 25, 2012

The Wednesday after the bleeding incident, Ian just happened to have an appointment for his 12 month hearing test... a little behind!  While we were there, we found this a great opportunity to speak about the previous weekend.
Ian’s ears were perfect and he was simply adorable sitting with me in the little sound proof booth listening to all the sounds.  There are lights and small barking toy dogs and such inside.  The Audiologist would trigger the sounds and wait for Ian to turn and respond.  He even heard the very low and very high beeps.  He wanted so badly to get down and investigate all the “toys” that were making noises; but then another noise would go on and he would search for that one.  It reminded me of the dog in “UP.”  He was very easily distracted.
Ian’s hearing was perfect and the results were uneventful.  When the test was over, I felt the extreme urge to remain alone in the sound proof booth and take a nap.  according to the Audiologist, this is a common request by parents!
We once agin visited with the nurse practitioner and she observed the clot in Ian’s nose where she believes the bleeding began.  This is the same clot that the pediatrician saw during the hospital admission.  She confirmed also that the culprit was most likely the Nasonex.  To make sure the bleeding was not stemming from the back of the nose, she took a small scope and viewed the back of Ian’s nasal cavity...... he liked the barking dog way better!!  Nothing was noted and she again confirmed that we had stopped the Nasonex.
We informed her that we would be following up the very next day with CHOP and verifying anatomy again with another upper GI series.

Sunday, January 22, 2012

Home Sweet Home

Yesterday afternoon, Ian was discharged from the hospital.  With no signs of bleeding since our arrival Friday morning, the doctors felt he was stable enough to be at home.  We will be calling CHOP tomorrow for a Thursday follow up appointment at their request.
The pediatrician reiterated to us yesterday that she feels as though the bleeding did stem from the nose.  She is able to see a small clotted area that may have been the source.  The verdict is still out and we may or may not ever be able to confirm the answer.
The CHOP doctor will be seeing us Thursday and he will being doing an Upper GI series to view the hiatal hernia.  He mentioned to us that sometimes those radiographs are misread and the chances of a hiatal hernia could still be up in the air.  The barium swallowed in the upper GI series will show movement and hernias.  The main issue as I see it, is how are they going to get Ian to drink the barium?!? ... and the last time Ian had barium, he pooped an enormous piece of white chalk!! ... very traumatic experience for little Beaner, and for mommy.  Hopefully, even if there is a hiatal hernia, it won’t be serious enough to be causing problems....... or bleeding.  We will have to see what the study shows.

Here are a few studies about herniated Nissens.  Research on these things is not fabulous, but briefly overviews what "might" have happened to Ian.  I have also included a picture of a Nissen Fundoplication and a Henriated Nissen Fundoplication (A type of Hiatal Hernia that Ian might have.)








On Wednesday, we visit the ENT for Ian’s one year hearing test.  We were supposed to do this back in the fall, but too many other things were going on!  Conveniently, this is the ENT that the pediatrician at the hospital recommended we see to have Ian’s “situation” evaluated after the bleeding episode.  Since Ian has chronic respiratory and sinus congestion issues, nosebleeds are not a surprise.  I’m not sure what he will say, or if we will need another appointment.  Our appointment is with his nurse practitioner, so maybe she can guide us.
Since being back home, Ian seems to be a little more trusting.  Being around only familiar faces, his fear has subsided.  The last 7 days were not easy for him.  Thankfully, the MRI and CHOP appointment testing for blood sugar all brought good results.  Overall, Friday was the only negative visit... but try explaining that to a 16 month old who is continually being stuck and poked!
This week, it seems like he seems to be punishing me for buying a white crib.  Friday morning, it was covered in bright red blood, and today... POOP!  We had a major “poop-plosion” as I call them.  The blankets and crib were smeared with poop.  As a new mother, this was something I never considered when purchasing a crib!  Although we do love his white furniture and it brings a sense of calming to such an eventful little boy!
On a much happier note, Ian has started saying “mom.”  It was always sweet to hear the  “ma-ma-ma-ma-ma” that would roll off his lips, but the sweet, short, “mom” brings little pursed lips that can only make you smile!
He continues to gravitate to the stairs... they are certainly his favorite “toy” at this time.  He likes to sit on the bottom stair and swing his leg back and forth over the edge.  His other leg rests on the stair and his arm up on the next step up.  He seems to be chillin’ there waiting for something... only to climb down, and then do it all over again.
The next few days brings more doctors appointment and follow-ups.  Hopefully, we will continue to get good news and things can start heading back in the positive direction.  We are in some serious need of boredom...... or several cases of good wine..... or maybe both! ;)

Friday, January 20, 2012

A Bloody Mess

Well, as usual, I spoke too soon........

After Reston, Children’s National, Hopkins, Fairfax, and CHOP, Ian can now add a 6th hospital to his list.  We have been admitted to Lansdowne Hospital in Loudoun County VA.  It all started this morning when Ian woke up...
He woke up about 90 minutes early and was a little fussy.  I thought nothing of it and gave him an opportunity to fall back asleep on his own.  I did not check on him.  After about 15 minutes, Ian began crying.  I decided to go into his room and try and rock with him a bit.  As I entered the room, I saw nothing but Ian, standing in his crib, covered in blood!  Ian’s room has recently been painted neutral to help the house sell, and all of his furniture is white.... tons of red blood was a huge stand out in the room.
Panicked, I rushed to him and checked for any visual trauma.  I saw nothing, other than the fact that his nose, mouth, ears and his entire face, was covered with blood.  I couldn’t tell where it was coming form.  He has a very large gathering of blood at the base of his left nostril.  I decided since blood was not running out of him, and he wasn’t crying or distraught, I would jump in the shower with him and rinse him off.  I was hoping I would be able to get a better image of where the blood was coming from.
Ian had finished his overnight feeding at 5:30am.  When I went in to turn the pump off, he was fine, no troubles.  Since he was still attached to the tubing, I needed to unhook him before getting into the shower.  As I detached Ian’s extension form his G tube, blood began running out, bright red blood.  Now, I was really concerned.
I called 911 and the paramedics arrived.  Ian was scared with lots of new faces in his room, but didn’t seem hurt or disoriented.  We took this as a good sign.  After a thorough overview and vitals, the guys decided Ian probably had a very large nosebleed that had gone horribly bad.  Since Ian had been lying down, if the bleed was in the back of the nose, he would have been swallowing a lot of the blood.  The blood seemed to have clotted and stopped.
Before the gentlemen left, I wanted to check the integrity of the G tube and make sure no blood was coming out form around the stoma.  Nothing was notable.  As I attached an extension to the button, and started drawing fluid from his tube with a large syringe, all I got was blood, about an ounce of blood!  The look on the paramedic’s face was unforgettable.  He told us we were going to the ER.  Ian’s stomach was essentially filled with blood.
Once in the ambulance, they did a thorough history and assessment of Ian.  Upon hearing of his history, the men decided they were going to make a short stop nearby to pick up another higher level medic.  This man knew exactly what he was doing.  He spoke to the hospital prior to our arrival and multitasked like I thought no man could ever do!  I was impressed.
When we arrived at the hospital, They drew some blood for labwork.  Ian’s blood cell counts were all normal, along with his clotting factors and so forth.  There was no infection and his blood was normal.  The next test was two radiographs to look for any perforation or tears in the GI tract.  Nothing was found on these films.  The next test was a gastrography.  This test pushes contrast through the G tube and shows on radiographs.  They were looking to see if the G tube had been misplaced or compromised in any way.  Both of these radiographs were normal as well.
The ER physician spoke to the surgeon who did the G tube and he believed the reason for bleeding was internal granuloma tissue.  Granuloma tissue is tissue that forms from the result of trauma as the tissue heals.  Ian had some trouble with this tissue forming outside the stoma.  It looks like a little red blister that bleeds very very easily.  Apparently, this can form inside as well; if bumped the wrong way, it can bleed until it clots and heals over again.  Another thought he had was an ulcer.
Either way, Ian’s tummy needed to be checked for residual blood.  They placed a large tube down his nose and lavaged everything out.  This is essentially like pumping the stomach.  Saline was flushed in, and drawn back out repeatedly until it showed no more blood.  If this test has repeated withdrawn blood without cessation, they would have transferred him to Gi immediately for an endoscopy to find out where he was bleeding.
Fortunately, Ian’s lavage came back clean in the end.  The blood was gone and passed into intestines by now.  There was no active bleeding taking place.  After this test, the ER physician spoke to the doctor at CHOP.  After discussing things with him, he decided that if there was an urgent need for treatment or testing, he would be transferred directly to them in Philadelphia.  Dr. Blinman, the CHOP surgeon mentioned he did not think the cause was granulation tissue.  He said granulation tissue really wouldn’t produce that much blood.
One of the radiographs did show a small dark shadow behind the heart.  The radiologist asked the physician if Ian had a Nissen Fundoplication... and of course he does.  The shadow seen is a hernia.  Ian has herniated his stomach partially through the Nissen wrap done in September.  This is a hiatal hernia.  Ironically, this may or may not be linked to the bleeding and could be completely independent.  The decision was made to admit Ian and observe his normal feeding routine overnight to watch for more bleeding.
Once we were on the floor and in our room, the pediatrician came in to speak with us.  Her main thought process stemmed around the thought of a nose bleed.  Her thought was if he had a bleeding hernia or ulcer, it would most likely have bled again by now.  She saw clotted blood in Ian’s nose and thinks that may have been the origin based on Ian’s history of congestion, chronic sinusitis, respiratory issues.  She will also be looking for a bacteria that can run rampant in the bowel after a course of antibiotics, called c. diff.  They will be running some tests on his stools.
At this point in time, there is no immediate need to do an endoscopy to find an exact source of bleeding, and it may not even find one.  Tomorrow morning, if all goes well overnight, we will return home and follow up with CHOP next Thursday.  If there is any bleeding before tomorrow around lunchtime, Ian will be transferred to CHOP immediately.  Ian’s doctor there wants to see him himself if anything happens.
On another note, Ian will need to have another upper GI done shortly to test the integrity of the Nissen again, since the hiatal hernia is present.  sometimes, these need repairing and sometimes they are fine the way they are.  CHOP will be able to give us more information on this.
So after 7 days of exams, MRI, blood glucose testing, and today’s adventures, Ian has been stuck over 12 times.  The poor kid looks like a pincushion at this point.  Thankfully, the large tube form his nose has been removed and only the IV remains.  He has been eating now for 2 hours and no troubles so far.  His feeding will be over at 4:30am.  The next several hours will tell us a lot about what was going on.
The doctor said we may not be able to find an answer, but that she feel as though the bleeding was coming from the nose.  She said normally, children and adults would vomit up the blood as it accumulated in the stomach and that typically this much blood doesn’t sit in the stomach during a nosebleed; however, since Ian has the Nissen and vomiting is harder for him, it remains in the belly.  Although, Ian wasn’t doing any retching overnight or today, but then again, he never really retched while he slept.  Who knows?  Hopefully, the next several hours will go smoothly and we can follow up next week with CHOP.
Ian is sleeping now and looks peaceful in his big bed here at the hospital.  The room we are in is practically a suite and is brand new.  The hospital completely remodeled the peds department and the room is wonderful.  There is a full size pull out bed for parents, a separate kid’s and parents’ tv, along with a noise sleep machine, private kitchen area and closet space.  We are trying to relax a bit now that things are stable and are hoping and praying the morning will bring good news.  Thank you to everyone who has been praying for us.  More news to come...

Thursday, January 19, 2012

A Very Happy New Year It Is: Hooray 2012!!!

Ian had another great visit at CHOP today.  We were able to get the results from the MRI last Friday.  The MRI was to look for Arnold-Chiari malformation of the brain; a condition where the brain stem and cerebellum are intruding into the foramen magnum (large hole at the base of the skull for the spinal cord to travel through).  This can contribute to neurological retching.  Ian’s MRI was normal and thankfully, no Chiari was found.
While visiting the post surgical reflux clinic today, we discussed Ian’s post-prandial hypoglycemia.  The goal for today was to do glucose testing.  The glucose testing was not for a diagnosis of post-prandial hypoglycemia, but rather to test for how treatment helps.  The dietician tried a large step in the direction of progress and wanted to see how Ian’s body tolerated the feeding.
Ian’s first test was a fasting blood glucose, goal between 70-120.  Ian’s was at 108 and they were very happy.  Ian of course was not happy!  After being deprived of food for 7 hours and then being stuck with a needle, he was certainly demanding food!  New glucose meters made it even harder.  The lancet does not penetrate the same and they had a hard time getting blood to test from.
After getting a fasting blood glucose, we made the new concoction... This was administered over 45 minutes.  When meals are this short, they are considered bolus feedings.  Ian received 120 mLs, which is 4 ounces.  The new recipe they were testing was similar to before, only with more Microlipid and the addition of pectin.  The Microlipid is a fat substance (I call it fat in a bottle!) which slows down the intestinal tract and gives the body more time to absorb the carbs he is being given.  It also adds calories.  The pectin is exactly the same as the pectin used in canning.  This ingredient slows down the tract as well and gives more time for things to absorb.
Ian needs more time to absorb the carbs and sugars because of his gastric surgery (Nissen Fundoplication).  Ian has “dumping syndrome” as a result of the surgery.  There are two types of dumping syndrome, early and late.  In early dumping, diarrhea and sweating occur because the food entering the stomach flies out very rapidly.  Late dumping, which is what Ian has, is actually a misnomer!  It is not “dumping” at all and has nothing to do with how fast food leaves the stomach.  The late dumping refers to blood sugar issues and is clinically termed post-prandial hypoglycemia, means hypoglycemia after eating.
As the dietician explained this to me, I could feel my head about to explode.  She informed us that the post-prandial hypoglycemia has to do with a large elevation in Ian’s blood sugar after eating.  I was instantly confused why it was called “hypo-” glycemia if there was TOO MUCH glucose!  She explained that this “spike” in glucose/blood sugar (180 or higher), triggers GLP1, an insulin precursor to release large amounts of insulin.  As these large amounts of insulin are released, glucose if rapidly depleted in Ian’s blood (leaving a blood sugar below 50).
Ian runs out of glucose before he runs out of insulin.  The job of insulin is to uptake glucose and convert it into glycogen, stored in the liver, for future use.  Ian’s insulin is working almost too much.  When asked why the body doesn’t release enough insulin to take care of the current glucose needs and then stop, she quickly answered with “That’s what the problem with post-prandial hypoglycemia is.”  She explained that sometimes manipulation to the gastric tract during surgeries can trigger this physical response and it is not exactly clear why, but it does resolve naturally over time.  She assured us that Ian’s body would someday learn to do on it’s own, what we are doing for him now.
The treatment now is to avoid the “spike” in blood sugar so that the body does not reactively release large amounts of insulin an cause the blood sugar to drop.  Over time, after some “happy time,” they will begin removing some of the additives and see how his body responds.  Over time, his large rise in glucose after eating will no longer “over-trigger” GLP1 and stimulate large amounts of insulin to be released.
We are still adding corn starch to Ian’s meals, even overnight.  It helps add some calories without hanging the osmolarity, or density, of the food.  The purpose of its use during the daytime meals is to slow down the spike in blood sugar.  Because corn starch is a larger chain dextrose sugar, it takes longer to break down and therefore, staves off the spike to some degree.
Over the 90 minutes, Ian’s body responded exceptionally well to the new testing meal and all of his blood sugar tests were normal.  He had a rise after eating, and then a slow drop, followed by a small rise later on.
Fasting: 108
Immediately after eating: 149
30 minutes: 82
60 minutes: 77
90 minutes: 91
This is what they had hoped and we were given the clear to move on with a new feeding routine.  Ian will remain on the same Peptamen Jr, with some water dilution.  Now, he will have more Microlipid and cornstarch, and the addition of pectin.  The reason these additives were increased is so the time can be decreased.  Ian will now have 4 daily meals of 45 minutes a piece.  This means he will only have to wear his backpack 3 hours out of the day instead of 10!  This is huge!!!  Ian will also keep an overnight meal.  This will now run for 8 hours instead of 6, allowing Tom and I to get more consecutive sleep... we did not argue this!
The recipe is slightly different, but also serves to load him up with some more calories at night while he sleeps.  He will now be receiving 8% more calories in a day than before.  It is now 24 calories an ounce, as opposed to the 22 it was before.
Along with the feeding changes, Ian’s medications will change a little bit.  Since he receives almost an ounce of meds in the morning, and this is when most of the retching is happening, they will be spreading them out and incorporating some of them into the food.  He may also be able to come off the prevacid soon!  Apparently, as the surgeon described, continual acid-blockage, from the prevacid, can contribute to chronic sinusitis!!!  This is what was triggering most of Ian’s daily retching.  Thanks to the course of Omnicef he just finished, that problem has resolved.  We will be watching him closely to see if it returns.  if it does, because of the prevacid, the meds will change and we will gain an ENT on our team.  Since the Omnicef course, Ian has only had 2 retching episodes a week!  It was 1-2 daily beforehand.  Who knew acid-blocking medications could cause chronic sinusitis!?
Due to the end of the year complications prior to the Omnicef, Ian has not gained weight, but is remaining in a growth curve of acceptance.  The antibiotic caused lots of diarrhea, and with having several Pedialyte only days due to such high feeding intolerance, Ian did not keep as many calories in as hoped; however, they are not concerned about his weight at this time.
On a side note, his button looks healthy and fabulous!  They are happy with how he looks and no problems are noted in that area.  Due to Ian’s very fair skin, the site is continually red, but normal.  We are continuing the Benadryl to help suppress and relax the emetic (vomiting) reflex in the brain (vagus nerve).  This has been doing wonders!
Ian’s demeanor lately has been wonderful.  He is a happy little boy who is now running everywhere!  His favorite new thing is stairs and is actually very good at them.  He has learned to come down and much to my dismay, is now trying to do it on his own.  He has started saying some words and has managed duck, ball, book, dog, and uh-oh.  Duck was his first word.  As ducks are my favorite animals, I was ecstatic!!!  I should also add that it was watching Baby Einstein and in no way had to do anything with ducks I was “pushing” on him as an influence! ;)
Each night we have story time and we are both there to put him to bed.  It is a wonderful happy time for us a a family.  Most of the time, Ian seems to be content during story time and is nice and relaxed from his bath, and ready for bed... and so are we.  Since Ian has been hooked to the pump, I snuggle with him until he falls asleep and then lie him down.  When laid in the crib awake, he often plays with the tubing and chews on things! ;)  Now, with his 8 hour overnight meal starting after he is asleep, we can work on him falling asleep on his own again.

All in all, it has been a great few weeks and we are finally starting to feel like what it is supposed to feel like it seems.  Ian continues to work with a feeding therapist and has “graduated” from occupational therapy.  His sensory issues are slowly resolving and our work at home and in feeding therapy is now sufficient!  Hooray!!!  I will make sure to keep everyone updated as the next weeks roll in.