Eat Happy!

Eat Happy!

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Tuesday, April 10, 2012

Ritz to Railroad Car

Today was a very uneventful day..... almost a wasted day in my opinion.  Since the Endoscopy and FlexSig were cancelled for today (Norovirus would have skewed any results)... we were simply “observed” by GI for the day.  Ian was a model patient and perfectly behaved for having to be under “room arrest” again all day.
We started to day a little early at 6:00am.  Ian’s connection had come loose sometime in the morning and he fed the bed again!!  He was lying in a puddle of formula and gastric juices, icky!!  Somehow or another, he managed to sleep through it.  This is unusual for him.  The nurse noticed when she came in to turn off his feeding pump...... which I ad already done when the alarm went off.  As a feeding tube mommy, you quickly learn to do the things yourself so you can set up, turn off, take down, and manage any errors on the feeding pumps.  Nurses are busy people and sometimes alarms happen at the worst times!  I usually always disconnect him and lock his feeding tube extension whenever he finishes eating in the early am hours, but for some reason I didn’t this time....... of course it would be the time he was soaked!!
In the early morning, about 8:00am, they came to test Ian’s Cortisol levels again.  Since the phlebotomist is on the floor between 4:00-5:00am, they drew too early yesterday.  Cortisol peaks around 8:00am or so.  They levels were about 11, normal.  Fortunately, all the endocrine tests have come back normal so far.
The rest of the day was spent watching The Wiggles, Sesame Street, Sprout TV, and Baby Einstein DVDs.  I can sing all those songs in my head.  I have to admit that I never get tired of LadyBug Picnic!  Some, like the ones I watched on Sesame, are simply classics.
As he afternoon rolled by and Ian awoke form his second two hour nap of the day, we were discharged from GI and transferred to Endocrinology.  There was an initial concern of whether we could even see Endo due to the Norovirus.  After speaking with the residents and finding out that Ian has not shown any Nororvirus symptoms, such as diarrhea, since Friday, Dr. Palladino accepted him as an inpatient now.
As we packed up all of our belongings......... being 3 hours away form home, traveling to a hospital with a toddler is like packing for a month’s vacation....... we left our Ritz Carlton suite and traveled down the hall.  Little did we know that the Railroad Car was waiting for us.  I now know why everyone is always talking about how wonderful the doctors are at CHOP, because a lot of the rooms don’t have anything good to say about them.
Endocrinology is a smaller unit, with mild-severe patients which are sometimes hospitalized for longer periods of time.  I’m not sure why, but there are only 4 private rooms in this unit.  These rooms are dedicated to children with respiratory contractable illnesses who need isolation.  As a result, we were placed into a double occupancy room.  I didn’t even know hospitals had these anymore until our stay at Johns Hopkins last year.  (Ian was in a Quad room with two other babies and a 6 year old for 2 days, with curtain partitions....... talk about HIPPA violations!)
My initial concern was “How are we going to occupy a 19 months old under room arrest for 3 days or more in a 12X12 space, with two adults?”  My second concern was “Why is he sharing a room if he is contagious and cannot leave the room?”  The answer form the nursing staff was because he simply needs to be 3 feet away form contact.  Now, I’m sorry in advance if I offend anyone..... but seriously, why is a child under room arrest if he is rooming with another child who doesn’t have the same illness?
Ian is only 9 months old and he has already run over to the other boy’s bed 3-4 times and touched tons of things!  I can only chase after him so fast... and I cannot do it time, after time, after time, after time.  This is a less than ideal set-up.  I spoke with a nurse about a private room and it will be at least 2 days for on to open up.... however, if a respiratory illness admits, we will be deferred again.
If I were the little boy’s parents next us, I would be more than upset that Ian was in the room with my son if Ian is “sick enough” to not be allowed to leave the room.  It just seems OFF to me.  Infectious Disease is going to come and meet with us tomorrow hopefully about a release of confinement.  Typical hospital protocol is “contact precautions” until 2 weeks after symptoms disappear.  But........ the virus is usually a 48 hour thing, 4 weeks at most....... Ian has had it for 3 months!  Sorry guys, but I seriously doubt he is still shedding the virus after over 2,500 hours if it is typically a 48 hour bug with a possible 2 weeks, only 336 hour, shedding period.  I am not getting my hopes up and I don’t think it’ll happen.  Infectious Disease may decide that since Ian is not experiencing symptoms and has had the virus for a large extended period of time, to lift the restrictions.
The room has no room for a rocking chair, so Ian and I snuggled in bed and sang songs until he fell asleep.  I have done this more times than any mother should ever have to do.  Naturally, there are mothers who have done it way more than myself, but trust me, no matter how many times you do it....... it is always hard, it is always sad, and it does NOT get any easier.  It doesn’t matter how many tubes, wires, or machines are there........ it isn’t home, it isn’t there bed, and they don’t understand.
Fortunately, Ian is such a super-trooper that he seems to do it all effortlessly.  He seems unfazed at this point that the room is 12X12 and that he cannot leave.  He simply enjoys visiting his roommate and crawling into the large wardrobe closet in the room.  He keeps our spirits up and continues to make us smile.


Tomorrow, Ian will actually have the Glucose Tolerance Test.  Originally, we were told this wouldn’t need to be done since the treatment for the diagnosed, by never tested, late dumping syndrome was working just fine.  However, I believe Dr. Palladino felt it was worth while to observe.  Seeing as though he is the #1 Pediatric Endocrinologist in the country at the #1 Pediatric Endocrinology Program/ Hospital in the country, I thought we should follow his guidance.  This will happen either tomorrow morning or in the afternoon.  After another feeding or two, the fasting test will begin in the evening.  This way, Ian can sleep for some of the test.  After 24 hours of not eating, I can only imagine the crank-pot he is going to be.  I’d be pretty pissed too if someone took away all my food.
Ian was without food for 36 hours back in January, but was still receiving IV dextrose (sugars) along with hydration fluids.  This time, he will receive hydration fluids, but of course, no sugars........ since the test is designed to look at blood sugars, and the ability to buffer your own sugar.
After speaking with the Endocrinology resident this afternoon, I have a better understanding of the test, possible outcomes, and what they all mean.  As the test begins, Ian’s blood sugar is taking with a finger or toe stick.  He then has a regular meal, via his G tube.  After this blood sugars are tested every three hours or so until his sugar drops to below 70.  Seventy is typically the lowest “normal” blood glucose level.  Then, as his sugars drop into the 60s, they will start testing every hour.  Testing begins at 30 minutes intervals once it drops below 60.
As it turns out Ian should be able to fast for 24-36 hours if everything is “normal.”  What happens during the test follows like this...........
****As fasting takes place, glucose is in the blood stream as blood sugars to provide energy for cells and life.  As fasting continues, since no food is going in, glucose levels begin to decline.  This is because insulin is taking up glucose and converting it to glycogen to be stored in the liver for reserves, and because less sugar (food) is going in.
****As blood sugar levels drop lower and lower, the liver begins breaking down glycogen into smaller chain sugars, called glucose, to be used as energy for cells.  In the meantime, the brain is unable to use these types of sugars, so ketones are created.  Ketones are energy reserves broken down from fat cells.  This type of energy is for the brain.
Hence, the presence of ketones is a GOOD thing, as well as stable blood sugars for a longer period of time.  If the blood sugar drops more rapidly, it shows a decrease in the ability to break down glucose from glycogen reserves.  This can be the result of too much insulin.  The excess insulin continues to take up glucose to be converted into glycogen for later, instead of STOPPING so the glucose can remain in the bloodstream for energy.
If ketones are not created, a dose of glucagon is administered.  Glucagon is a hormone produced by the pancreas as well.  It is given to help elevate low blood sugar.  Ideally, if no ketones are present, and glucagon is administered, the blood sugar will not respond...... an immediate response to glucagon is an indicator for Hyperinsulinism.  "Normal" babies and children will NOT react to glucagon and require "regular feeding to bring up blood glucose levels.  Very rarely, individuals do not respond to glucagon that still have troubles.  Those specific medical conditions are unknown to me.  What is significant is, if no ketones are present, and Ian DOES respond to the glucagon, that means he had too much insulin.
Now, how those results are interpreted are also unknown to me.  We will be asking doctors tomorrow about whatever our outcome means and how it plays a role, if any, in his future.
A few things can stop the test:
  1. Ian’s blood sugar drops to 50
  2. Ketones in his blood (sugar sources from broken down fats when glucose is unavailable) appear at a high enough level..... which is unknown to be
The whole idea and system of Endocrinology has never been a strong point of mine.  I remember in all of my medical classes that this, and Embryology, were always the most difficult to follow.  As I speak with friends, family, and doctors, I am doing LOADS of research from my laptop in hospital lounges.  I never take anything at face value and always want to know WHY something works, HOW it works, and WHAT causes it and helps make it better.  Telling me a diagnosis or treatment is never enough to satisfy me.  Call it a hunger for knowledge, the determination of a mother, or the stubbornness of a patient...... I don’t care.  maybe it’s all three!
I have included some links to endocrine testing in my previous post and listed in the resources section below if interested.
I don’t know if I will ever understand how Ian is as strong as he is.  All I know is that I am thankful for his cheery-attitude (lots of us could stand to learn form that) and eagerness to be a normal little boy.  I don’t know if it is simply because his little body keeps on trying and trying, or if it is because it gets a strong determination and stubbornness from all his experiences.  Maybe it is both...... either way, his smiles light up my day.  I have never seen a little boy get such enjoyment out of the tiny things in life.  he certainly never takes ANYTHING for granted, and I believe we should all try and do the same.

We will be here for at least 3 more days...... I will keep everyone posted!  Thanks again for all the support.  In the words of a friend...... our little ones who try so hard and go through medical ordeals that no child should have to undergo should have a TV game show entitled..... “Are You Tougher Than A  Toddler?”  Thanks Jason! :)

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