Eat Happy!

Eat Happy!


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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.