Maybe. Might Be. Wait and See.

 
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Last week was stressful, as I’ve written.  The diagnosis of FPIES has been tough to bear so far, just in the fact that there are no easy solutions to this problem.  The more I read – the more I learn – the more scared I get about what we may face in the future.  I’m trying very hard not to borrow trouble, or let the worry overwhelm me, but I feel I would be foolish if I didn’t consider the problems we may encounter and try to stave them off through knowledge and planning.

It’s a tough row to hoe.

As for immediate concerns, I think I wrote about how Mr. Happy seemed to be having some kind of reaction to the Neocate last week.  Each day seemed to be getting worse, until on Friday he was acting as I wrote in the last post.

In my reading, I saw a post someone made on a message board about the caloric content of formula, and how to make their babies’ formula a different caloric content.  This was a new concept to me; previously, I strictly followed the directions printed on the can.  I didn’t consider that watering it down or thickening it up was even possible.  I also read something about thresholds.  About how a child can sometimes handle a certain amount of a food but not more.  Someone else wrote how their child didn’t seem to do well on the formula because a certain element of the formula ‘sits hard’ on the tummy.

This got me thinking – maybe if we watered down the formula, he wouldn’t have so many problems. It might lower the part of the formula that ‘sits hard’ on the tummy, and may also lower the quantity of whatever is in the formula that he’s reacting to into an ‘under the threshold’ quantity. Plus, it may serve to help hydrate him better.

So for his last bottle on Friday night, instead of 8 scoops of formula to 8 ounces of water, I made the last bottle with 6 scoops of formula to 8 ounces of water.  (Don’t worry, he only drinks 1.5-4.5 ounces at a stretch…we just pre-make bigger bottles of formula to use.)

He seemed okay on it.  He didn’t spit up afterwards, and he didn’t gag or choke, or cough, or stiffen up in pain at any point in the drinking of it.

So we kept him on the diluted formula all day Saturday.  And all day, he didn’t gag, choke, cough, spit up, or stiffen in pain.

This morning, I made his bottles at the 8/8 ratio again.  I wanted to see how he would react.

All day, he has spit up after nearly every bottle, he has coughed frequently throughout the day, he has choked and gagged several times, and he has stiffened up in pain a few times today.

So now I get to decide which doctor to call: the GI or the Allergist?  Which one do I mention this to?

Also, how concerned should I be about him getting his appropriate caloric and nutritional intake with watering the formula down like this?

Oh, and also, when he’s on the 8/8 ratio he doesn’t wet very many diapers, and he doesn’t wet them very thoroughly.  On Saturday, his diapers were nice and full.  So is he just dehydrated, and that’s why the formula is causing these reactions?

I just don’t know.

The worst part is that the big formula experiment I’m in is a very mild, very simple example of what I will deal with every single time I introduce a new food to him for the next 3 years (at least).

I’m scared.

_____

We’re also watching Mr. Charm more closely now that we know what FPIES is and what to look for.  I really think he has it, too.

He has been eating less and less over the last four? Five? Six? months.  It’s been concerning, but because he’s obviously still growing and meeting milestones, I chalked it up to toddler pickiness and moved on.  My Mom has mentioned several times to me as reassurance that “any child with 3 squares placed in front of him every day will not starve”.  Good point.

Except, in my reading about FPIES, it’s not true.  FPIES kids will starve themselves, even when food is in front of them, because they’ve learned to associate food with pain.  Mr. Charm does NOT have acute FPIES, where he vomits and goes into shock, but he has many of the other symptoms of FPIES –  or, at least, a serious food intolerance – and I’m concerned, now, that he’s learning to associate eating with being uncomfortable or in pain.

This morning he would eat NOTHING that the Geek offered him.  NOT ONE BITE OF ANYTHING.

At lunch, I offered him a Turkey & Rice Toddler meal (one of the only supposedly “safe” pre-made foods we can serve him) and he ate half of it, along with about 5 potato chips and a piece of turkey lunch meat.

I ask you, do you know of any toddler that would not eat more than 5 potato chips at a time??

Immediately after lunch, I put him down for a nap.  He woke up only an hour and a half later, and though he seemed in good spirits at the time, within 30 minutes of waking he turned into a Holy Terror.

He whined.  He cried.  He screamed.  He fell to the floor in fits.  His rambunctious playing had a decidedly frantic feel about it.

He stayed like that all. day. long.

Turkey.  Rice.  Two of the biggest FPIES trigger foods.

How much of his belligerence and fit pitching is his age, and how much is a previously undiagnosed food intolerance?

He mooched snacks from us all day, although he has gotten more adamant that we only give him what he wants for snacks.  He takes me by the hand, walks me to whichever cabinet holds whichever snack he wants, turns and says “UP”, and after I pick him up, he opens the cabinet and then points to which snack he will accept.

Today he wanted Snickerdoodle cookies.  He ate two.  Then he wanted pretzels.  He…grazed…on them all day, but almost all that we gave him wound up on the floor as toys.

He mooched about 8 bites of my cereal with almond milk.

He refused to drink more than a few swallows of the chocolate almond milk I got for him.  (What kid doesn’t like chocolate milk?)

At dinner, he ate none of the corn, and only a few bites of the chicken.  The rest he played with, either putting it in and taking it out of a small ramekin, or throwing it on the floor.

Today’s menu for Mr. Charm was NOT a healthy diet.  He’s been eating like this for months now.  Every now and again he’ll have a good day where he eats fairly well, but the pickiness or avoidance is slowly getting worse.

And the behavior is identical.  Some days he’s great.  Some days he’s great…until he’s suddenly NOT – and for no apparent reason.  Some days he’s awful all day long.  So how much of this is ‘normal toddler’, and how much is a sign of something else?

The elimination diet we’re going to be starting this week will, hopefully, help, but the thing I’m most looking forward to (even while I’m going to dread doing it) is the food/behavior journals.

All three of us will be keeping a journal (until I start nursing Mr. Happy again, then he’ll have a journal, too).  The Geek and I suspect that we may have some food intolerances,  though ours are quite a bit milder than either of our kiddos.  Mostly, we’re suspecting they affect our sleep and mood more than anything.  For Mr. Charm, though, this may be the answer we need to find out if he truly is intolerant to things, and what those things do to him.  Plus, if we can start serving him only foods that don’t make him feel icky, he may regain his appetite and start to grow better.

After all, he’s  never been labeled “failure to thrive”, but he went from the 90th percentile on  height and weight at birth down to his ongoing, hovering 10-25th percentile.  Maybe food intolerances are the answer to his growth pattern.

Maybe, maybe, maybe…sigh.  I don’t know.  I just don’t know.

There are so many maybe’s…wait and see’s…so many questions – could it be this, or that?  For all of us, now, but mostly for the kids.

I will handle it.  I have no choice.  But for today, I’m scared.

Get Thee to a Nutritionist

 
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This morning Dr. G called back.  He basically agreed that Mr. Charm might possibly have a milder form of FPIES, and he thought our idea of a self-made elimination diet wasn’t bad.  He said most doctors won’t suggest elimination diets unless they’re absolutely necessary because most people don’t want to do them.  Therefore, they won’t do them.  But he, himself, has food allergies, and did an elimination diet to determine his trigger foods, so he was on board with our idea.

His only suggestion was that we meet with a nutritionist to make sure our self-made elimination diet stayed micronutritionally sound for all three of us.  That’s not a bad idea, and he said our local allergist should have someone she recommends.

He also mentioned something called “Heiner’s Syndrome”, which is another form of food protein intolerance.  It seemed like Mr. Happy was showing symptoms of Heiner’s Syndrome in the hospital.  He had shallow, fast respiration, chest wheezing, bloody stools, etc.  I was okay with the idea that Mr. Happy had FPIES and Heiner’s Syndrome, except that I’ve been dairy free since March!  Mr. Happy has never been exposed to dairy!  And Heiner’s Syndrome, from what I’ve seen online, is strictly a dairy protein intolerance.  Dr. G, of course, said that it is only ‘mostly’ dairy protein intolerance.  So, I guess we don’t know if he has a secondary condition to deal with, too.

Frustrating.

We called our GP and she had a dietician/nutritionist she recommended for us.  We were able to get an appointment for next Tuesday at 2:30 p.m.  Even better?  It is covered by insurance.  Nice!

In unpleasant news, two times today we witnessed Mr. Happy having a classic FPIES reaction.  I feel so impotent!  He’s having a reaction to the Neocate, but I have nothing else to feed him!  He’s breathing shallow and fast, sweating a lot (although it is 103 degrees here), and twice today spit up so much that it had to be a small vomit, coughed and hacked and looked miserable, and then crashed.

We have no idea what to do.  Please pray for him.  And us.

At the Allergist

 
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Today we had a follow-up appointment with the allergist.  I was nervous, because I’d done as much reading as I possibly could in the previous 24 hours, and it appears to be quite common, at least, from the moms who report their experience on message board support groups for FPIES, that many doctors have never even heard of FPIES before.  Not just regular pediatricians, either.  Nope, full blown pediatric allergists have never heard of it, and will confidently say that a child cannot possibly be allergic to rice and send you home with no recourse.

So, I was nervous.  Turns out, I didn’t need to be.

I filled out the paperwork for Mr. Happy, as he was a new patient today, and under the “why are you here?” section I wrote “Possible FPIES”.  I had read enough to know that there are other conditions that seem a lot like FPIES, and that have similar symptoms, so I wanted to see if the doctor would help us rule something out, one way or another.

When the doctor came in the door she sat down and immediately said “FPIES, hmm?  That could explain it.”  Such relief washed over me, you’ll never know!  I wasn’t going to have to explain the condition to her, or convince her not only that it existed, but that my child may have it!  (Many moms on the message boards apparently do; they have links to the best medical papers to print and take with you to help bolster your case in that event.  Scary, huh?)

She asked a lot of questions, looked baffled a few times, once said “Do you mind if I call a colleague of mine, who I know is more ‘up’ on this than me?” – which I was okay with, asked if I minded doing a prick test on Mr. Happy, asked if I minded having a prick test done on me, even tested the pumped breastmilk I had in the car as a prick test on Mr. Happy.

In other words, she was as thorough as one can be with this diagnoses.

In the end, her biggest concern was that somehow, Mr. Happy is allergic to my milk itself; not to something in my milk.  I think that’s unlikely.  That can happen, true; but it is so rare as to be almost impossible.  Besides, I think Mr. Charm has undiagnosed FPIES, and he’s completely weaned and still exhibiting symptoms.  So, I’m not worried about that.

Mr. Happy’s allergy prick test came back with a big, fat positive on dairy.  In fact, when the serum started to roll off the welt being formed underneath it, it left a streak of welt everywhere it touched his skin. Even the doctor was a bit amazed at that.  So the Epi-pen we just got for Mr. Charm’s egg allergy serves double duty as an Epi-pen for Mr. Happy’s dairy allergy now.  Fortunately, it was the only thing he tested positive for in the IgE camp.

Breastmilk tested negative, and I tested negative for everything, too.

In the end, after two hours of non-stop working with the doctor in her office, she agreed with the FPIES diagnosis.  And that’s when I asked the question “What exactly am I supposed to eat?  I’m confused that he’s asked me to eliminate dairy, soy, egg, peanut, wheat and seafood from my diet, when the top most common FPIES trigger foods are dairy, soy, rice, oats, barley, chicken, turkey, sweet potatoes, green beans, squash, corn, and eggs.  If I eliminate ALL of those things…what’s left to eat?”

Her response was basically “How committed are you to breastfeeding?  If the formula works, keep using it.  It’s impossible to eliminate all of that from your diet.”

Sadly, on this one, I disagree.  On the message boards I read of moms who were down to being able to eat only THREE things, but they were still nursing their kiddos.  So, it’s not impossible. It’s just hard, and painful.

Still, I don’t see the logic of eliminating peanut and seafood, unless there is something I don’t know.  She didn’t have an answer, so I figured I’d have to ask Dr. G himself.

In the end, she wanted to check on his CBC levels (which were taken at Dr. G’s office yesterday) and send out a sample of his stool for blood testing.  She wants him to stay on the Neocate for at least 4 weeks before I start trying to nurse, and recommends I simply avoid dairy and soy.

The problem that I can see with that is that I was already avoiding dairy, and I rarely eat soy.  If Mr. Happy was responding to something in my milk so strongly that he ended up in the hospital, it was NOT milk, and was probably not soy.  So I’m left with not having any clue about what triggered the reaction in him.

So, I left her office feeling VERY confident that we have – finally – received the correct diagnosis for both our boys.  I stopped to call Dr. G’s office and left a message.  Hopefully, I will hear back from them tomorrow about what I truly need to eliminate from my diet.

Dr. M called me this evening to report that Mr. Happy is no longer anemic, his platelet count is still high, but it’s improved from the hospital, and he is showing evidence of growing new red blood cells, so that’s all good.  When the stool test comes back tomorrow for blood testing, if it is negative, great, and if it is positive, we’ll have to try new formula.  Ele-care is the other elemental formula on the market.  If that doesn’t work, I don’t know what we’ll do.

So tonight the Geek and I talked it over and agreed that FPIES is probably the correct diagnosis, and we’ll figure out how to deal with it together.

After the kids were in bed, I told him I wanted him to watch the Jack video I linked to earlier.  In case Mr. Happy ever has a full-blown FPIES episode, I thought it good that we both know what it looks like.  With construction, our joint computer is set up without any extras – like speakers – so he decided to just watch it on his phone while he took his bath.

I finished cleaning the kitchen and went to go see what he thought about the video.

“Remember that night that Mr. Happy was dry heaving and we called the after-hours nurse line?” he said.  I didn’t.  But when he started talking about it, the memory came back.  “Oh my God!”  I said.  Mr. Happy already HAD a full-blown FPIES episode and we just didn’t recognize it.

One night, when he was about 3 or 4 weeks old, we were sitting in the office/dining room one night before bed.  Mr. Happy had finished nursing, and the Geek was burping him for me.  Suddenly, he spit.  Only, it was far more than normal spit up.  I wasn’t convinced it was vomit, because it didn’t projectile the way my experiences with vomit have me believe is the only way you can vomit.  But it was an obscene amount of spit up.  Then he started hacking, coughing, his little body positively jerked with the heaving he was doing.

It was not normal.

I tried googling the symptoms but found nothing, so we called the after-hours nurse line at Dr. A’s office.  K, her nurse, listened to us describe it, and said, basically, that it sounded like something that just happens sometimes with babies.  They puke for whatever reason, and then they’re all better.  Just keep an eye on any fever.

The Geek didn’t buy it at all.  I didn’t buy it completely.  But we had no idea what else to do.  So, we kept an eye on him that night, and watched him more closely for a week after that, but it never happened again.  So, I forgot all about it.

Thank GOD the Geek didn’t!!

After Mr. Happy heaved for about ten minutes, it was like he crashed and just passed out.  But, it was bedtime, so we just figured he’d gotten it out of his system and had gone to sleep.

After watching the video tonight, the Geek said it was like watching an older version of Mr. Happy doing what he did that night.  Thinking about it for all of 2 seconds, I have to agree.

Then we started talking about how Mr. Charm sometimes will be playing happily, smiling, being sweet and adorable, and suddenly turn into Mr. PITA for no reason.  We always say “He must be tired”, because it’s usually about three or four hours after he wakes up and he should be heading for a nap about that time. But think about it – what happens right after he wakes up? We FEED him.  And within two hours, he’s acting like someone possessed him, and then he crashes, or sits around listless and lethargic.

Because he doesn’t vomit, and we had no reason to, we never connected those things before.

But since Mr. Charm has been alive, he’s only had one or two months where his stool looked solid and firm.  The rest of the time, it’s incredibly loose.  In the hospital, S came up on me as I was changing Mr. Happy’s diaper one day and asked “Did he have another diarrhea diaper?” and I asked “Another?  He’s had diarrhea?”  She said that every diaper he had in the hospital had been a diarrhea diaper. I had no idea.  The Geek had no idea.  We thought that was normal.  Because every diaper we’ve ever changed on either of our sons, not counting the 1-2 months where Mr. Charm’s stool was solid and firm, looked exactly like the diaper I had just changed.

So both of our boys have had non-stop diarrhea since birth.

Frankly, I’m horrified.

I can’t believe we didn’t notice more was wrong with Mr. Charm before this.

As the Geek pointed out, though, once we eliminated dairy, soy and egg from his diet, he improved so drastically that it was easy to assume he was ‘all better’.

And it’s not unheard of for the ‘terrible two’s’ to start a little earlier than 2.  We just groaned when we told people that Mr. Charm started his terrible two’s at 14 months old.

And toddler’s are notoriously picky.  So I’ve been chalking up his lack of appetite to that for the last 6 months.

I feel awful, but the Geek is right – it’s very vague, and without knowing FPIES existed, how would we have made the connection?

But tonight was like a lightbulb going off over both our heads, and my fabulous husband, with his trouble-shooting mentality came up with a game plan for us.

The whole family – him included! – is going on the worst diet in the world.

We haven’t finalized it, yet, but here’s what we’ve come up with so far.  We will eat the following things for the next 4 weeks:  beef, white potatos, carrots, lettuce, spinach leaves, cucumbers, tomatos, bell peppers, watermelon, cantaloupe, blueberries, pineapple, coconut milk, apples, salt, pepper, basil, oregano, olive oil, coconut oil…and, I’m sure we’ll figure out a few more fruits and veggies to toss into the mix.

We will keep a food/behavior journal on both Mr. Charm AND myself (since after learning about FPIES I suspect I have an intolerance to something, too) and if, after a month, Mr. Charm is still showing symptoms, we’ll eliminate the most likely candidate for two weeks and go from there.  If he is, actually, improving, then I will start nursing again and start a food journal/behavior journal on Mr. Happy.  After two weeks, if he’s doing great, then we’ll start adding one new food a week to our diet.

Sounds like hell, right?  But the Geek is right;  it’s the only way to be absolutely certain we’re finding the cause and fixing it.  They actually have a name for this, and I think I mentioned it before.  The TED – Total Elimination Diet.  It’s well known, and Dr. Sears himself endorses it.  You want to know what is on it?  Turkey, rice, sweet potato, squash, and peaches.  Yep.  Only 4 out of 5 of the very things that are most likely to trigger an FPIES reaction in my son.  So we’re making our own elimination diet, and it’s going to be miserable, and we’re all going to be sick to death of food by the end of it, but we will, by God, fix our babies.

How Could an Accurate Diagnosis Still Be So Inaccurate?

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Bright and early on Wednesday we had a follow-up appointment with the pediatric gastroenterologist.  This is the same doctor from the hospital; he apparently also has hours a few times a week in a town closer to us.  God Bless him!  When Mr. Charm needed a pediatric GI doctor, we had no choice but to drive to Little Rock – there wasn’t one in our area at all.  So this is a huge break for our family.

At 8:30 a.m. we were there, signing in for the appointment.  After a short wait, we were led back to be weighed and measured by the nurse.  Mr. Happy was up to a whopping 11 pounds 13 ounces!  He’s just over 23 inches long!  He’s growing faster than Mr. Charm ever did, that’s for sure.

She took us to our exam room, and we waited.  I fed Mr. Happy.  I fed Mr. Charm.  I fed myself.  Being on this allergy diet means that fast-food is out for the time being, so I had my old work cooler packed to the gills: cereal for me and Mr. Charm, bananas, apple, clementine, granola, almond milk for the cereal, utensils, and two bottles of formula made up for Mr. Happy.  I also had a hot cooler in the car with warmed chili for us for lunch, in case our day required we be out that long.  It was like packing for a moon landing!  So, we ate in the examining room because this was our normal breakfast time.

I kept Mr. Charm from unplugging the TV.  I kept Mr. Charm from unplugging the BP/thermometer equipment.  I kept Mr. Charm from pushing the exam table into the center of the room.  I kept Mr. Charm from climbing on the counter to play in the sink and grab the TV/DVD remote controls.  I kept Mr. Charm from turning the trash can over.  I LET Mr. Charm ride on the doctor’s round, rolling stool.  I LET Mr. Charm dig through the diaper bag. I gave Mr. Charm my money purse to play with.

In there I had 4 dollar coins, 2 quarters, 2 nickels, 2 dimes, and 2 pennies.  I grouped all the coins together with their like partners and counted them for him.  The dollar coins were all in a row.  He took a penny and put it at the end of the row.  Then he grabbed a dime and put it after the penny.  Then he took another dime and put it at the end of the OTHER end of the row.  Instantly he moved the dime out of the way, grabbed the penny, put it at the end of the row, and put the dime after that.

He lined things up in a symmetrical line, using like items.

That’s two major developmental milestones right there!

And just as he finished doing that, the doctor walked in the room.  So, I didn’t get to gush all over him like I wanted to, because it was time to ‘talk Mr. Happy’.  But I was still so proud I thought I would burst!

Turns out, the doctor wanted the follow-up for three reasons: 1. To see how I was doing eliminating things from my diet.  2. To see how Mr. Happy was doing on the Neocate.  3. To run another CBC blood scan to check for anemia, which, apparently, he was still suffering from when they took the last test in the hospital.  It was just doing well enough that they were confident it would keep improving, so assumed it would be safe to let him go home.  This was to make sure the assumption was correct.

OK, well, I happily told him we were doing great on the new diet, and that Mr. Happy was doing great as well.  I only had one concern, and it was that, starting Monday, he had started having some eczema on his cheeks and ears, which is where Mr. Charm first started showing eczema when he had his issues, and the fact that since Monday, Mr. Happy was spitting up a lot again.  We’d had a whole week where we didn’t get drenched after every feeding, so we noticed this symptom right away.  Combined with the eczema, I was starting to worry that Mr. Happy was reacting poorly to the Neocate.

Dr. G chatted with us a while, telling me that when I resume nursing Mr. Happy, I should make sure to come hang out in town that day.  You know, just to make sure we’re near a hospital…in case.  Comforting, right?  Then, in talking about Mr. Happy’s allergies he made a comment about “…even though the RAST came back negative…” to which I interrupted him.  Say what? Negative?? So, he’s not allergic to anything?

Of course, the doctor corrected me.  He is allergic, just not IgE allergic.  Well, yeah, I know that, but I assumed from the way we the instructions were given when we were discharged from the hospital that the RAST came back positive to those six things, and that was why I needed them to be eliminated from my diet.

Turns out, nope.

Those are just the six things the doctor picked for me to eliminate to begin trying to find Mr. Happy’s trigger foods.  He does have allergies, but they’re totally non-IgE mediated allergies.  The RAST was, in fact, clear.  So, I don’t have my clear-cut answer.

Hmm.  I asked him if he was sure, totally positive the RAST was clear.  He looked thoughtful for a moment, and said he would go double check in our records for me and come back.

He left, and a few minutes later the techs came in to draw blood.  They stuck a needle in his left arm.  Couldn’t get blood.  Stuck a needle in his right arm.  Couldn’t get blood.  Finally, they pricked his foot and squeezed out enough blood to run the CBC test.  It was painful to watch, and hurt my heart to watch him scream in pain like that.

After they left, we waited more.  Mr. Charm was impatient at this point; the appointment started at 8:30 a.m.  We were in the room by 9:00 a.m.  It was 10:30 a.m., which is a long time for a 2 year old to be confined to such a small space.  He started taking the trash can and opening the door, then pushing the trash can up and down the hallways.  I finally gave up and just followed him holding the baby, making sure he didn’t go far and didn’t run into or trip anyone.  What do you expect with a high energy 2 year old?

Finally, nurses started showing up trying to shoo us out the door.  I had to explain that the doctor said he was going to check on some test results and come back in the room to finish answering my questions.  Before any of them were able to check and get back to me, I saw the doctor himself coming out of his office across the hall.  He saw me, and from the look on his face I could tell that he had just forgotten that he was going to come back to see me.  They run a seriously over-scheduled operation there!  So we finished our consultation standing in the hallway, which, I’m sure, violates some kind of HIPPA law or something, but I didn’t care.  I wanted my answers.

He assured me that the RAST came back clean, and continued by saying “…but that’s common for FPIES kids.”

FPIES?  I had just read something about that syndrome the week we were in the hospital when I was googling MSPI to refresh my memory on it for Mr. Happy.  But, I didn’t really know what it was beyond a form of food intolerance.

So I was a bit stunned – I’d never heard anyone diagnose Mr. Happy with FPIES.  I said “He has FPIES?  I’ve heard of it but know nothing about it.”

The doctor told me what it stood for, and that it was, as he said in the hospital, a non-IgE mediated allergy.  Everything he said in the hospital is still true, yet, somehow, there was a miscommunication.  The diagnosis of FPIES threw me for a loop.  I had no idea what it stood for, what it meant, what the prognosis was, what the long-term effects were…nothing!  I didn’t know enough to even know what questions to ask, and the nurses were shooing me and the doctor was inching his way down the hall.

So, I gathered up our stuff and left.  I figured I could call him back and bug him over the phone if I needed to.  Besides, Mr. Charm needed to move!

So I stopped in a parking lot to set up to pump, and start googling FPIES on my phone.  In a short time, I’m calling the Geek to tell him the news, and tell him that I furthermore think Mr. Charm has FPIES, too.

What is FPIES, you may ask?  Food Protein Induced Enterocolitis Syndrome.  I cannot even begin to explain it as well as some other people have on the web, so I’m going to link up to them here.  The lady at My FPIES File Cabinet has written a terrific explanation of what FPIES is in that link, and also a terrific side by side comparison of IgE versus non-IgE allergy symptoms.

Perhaps the best thing I found, though, is this video of a little boy, probably just a tad bit younger than Mr. Charm, having a full-blown, classic FPIES episode.  It’s stunning video, let me tell you.

Then there is always the official websites for any condition, and Kids With Food Allergies.org has their own page of FPIES explanations.

So here we were, with this whole new diagnosis that means a whole new thing, and I know nothing about it and have to squeeze in reading on my phone about it in between taking care of the two kids and cooking an entirely new way.  Such fun.

Gluten Free and On The Dole

 
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The hospital gave us 2 cans of Neocate and the remaining pre-mixed formula they had ready for Mr. Happy when we left the hospital.  This only provided, by my estimation, enough food for Mr. Happy to last until Monday or Tuesday of the following week.  Not a lot of time to figure out how to procure more formula.

While still in the hospital, I called our insurance company, both health and prescription.  Health insurance said they would cover it…after we met our deductible.  Since we’re hoping he’ll only be on the Neocate for 1-2 months, we could outright buy it for longer than that before the deductible is met.  (I know the hospital bills will surely meet that deductible, but with the delay in billing it wouldn’t necessarily help us right now.)  Prescription coverage informed me that our co-pay for this formula was 100%.  Not helpful at all!

Then the lady told me I could ask my doctor to call and request they give us a “co-pay exemption”, but that it wasn’t guaranteed, and it might only reduce the co-pay to 70 or 80%.  Still, it was something.  So I asked the doctor there in the hospital, and he said that usually in those circumstances the insurance company wants the requesting doctor to be the general practitioner/usual pediatrician.

So, the next day, when we were home, I called our pediatricians’ office to set up Mr. Happy’s follow-up appointment and ask if they would make the request for us.  They set up his appointment for Friday afternoon, and the new receptionist had no idea what I was talking about when I asked if they would call the insurance company for us.  Instead of asking someone, or looking into it for us, she just shrugged it off saying “You can talk to Dr. A about that on Friday.”  I was busy thinking, ‘Look, lady, I only have enough food for my baby to last until Monday.  I don’t have time to wait until Friday to ask Dr. A!’  I sounded exasperated, I’m sure, so she said she would ask the doctor for me and call me back.  She never did.

Instead, I sucked in my pride and called the County Health Services Office to request an appointment with WIC.  Thursday morning the two kids and I trudged off to officially find out if we could get ‘on the dole’.

Amazingly enough, we qualified by the skin of our teeth.  With me out on leave and not earning a paycheck, the Geek earned $2,000 less annually than is maximum allowed for qualification.  Thank God!

So after answering a barrage of questions, Mr. Charm, Mr. Happy and I headed back to be examined by the nurse.

She weighed and measured both children.  Then she took blood from both Mr. Charm and I to check for anemia.  Then we had to sit in her office and go through incredibly invasive and detailed information about everything we eat, our environment, daily habits, etc.

In the end, we left with “coupons”, which are highly specific shopping lists to use at the grocery store (example: 2 each – 2%, 1%, or fat free Milk; 2 each – 64 ounce juice, etc.), $30 to use at any local farmer’s market andmost importantly, the promise of Neocate delivery on Monday or Tuesday – at no charge to us.

Whew.  I can feed my child!  Thank you, God!

Friday we went to see Dr. A for the follow-up appointment.  Even though two nurse friends of ours pointed out that a first year nursing student should have been able to identify respiratory distress and possible chest infection in a baby, and this doctor missed it, she never once made any comment one way or the other about her lack of diagnostic skills.  I like Dr. A.  She’s a very nice lady and she is very kind and good to my boys.  But I’m very concerned about the way her office is being run now, as several of the people I usually deal with are suddenly gone and a revolving door of new people are working there.   Everyone has been nice, but I haven’t been able to get to know them or feel that they’ve gotten to know us the same way I did with the prior employees.

Add to that the fact that while she did initially diagnose Mr. Charm with MPI and recommend the correct follow-up specialist, she herself knew little about it that was helpful to me.  Compound the current misdiagnosis that very well could have killed our son, and, well, we’ll be looking for a new pediatrician soon.  I’m just afraid I won’t find better.  (Mr. Happy checked out 100% to her, though she didn’t check his stools for blood.)

I decided to take the kids grocery shopping after the doctors’ appointment.  While I was at it, I figured I may as well use some of the WIC coupons.

Wow – what a challenge!

They provide a booklet for you that is very specific about what brands are acceptable for each food category, and on top of that, you must determine the least expensive of the acceptable brands every time you go.  It took an extra 50 minutes of grocery shopping for me to figure all of this out.  However, I took home between $50-60 of groceries that I didn’t have to pay for, so I suppose it’s worth it.  Especially since I had three full bags of fresh fruits and vegetables as part of my WIC food shopping.

I must admit, though, to a certain sense of…shame or embarrassment while I was checking out.  I’ve never used public assistance of any kind before, not even when my take home pay as a Flight Attendant in New Jersey was $963 per month.  I KNOW I qualified for Food Stamps and who knows what else at that time.  But it never crossed my mind to even apply.  I’ve always been a ‘stand on my own two feet, I’ll take care of myself’ kind of person.  Children can teach you a lot about life…I never would have gone on WIC (or any public assistance) for myself, but I am willing to do it for my kids.  So, pride goeth before the fall.  I admit it: I need help to provide for my children.  It stings every time I have to say it.

(shaking it off…)

In the meantime, Mr. Charm and Mr. happy were doing great.  Mr. Charm seemed to have no physical complications from his hospital experience, though the stress of the week seemed to be coming out a bit in behavior issues.  Mr. Happy looked perky and alert again, and was right back on his regular routine: eat like a pig all day and sleep for long stretches at night.  Besides his health, an added plus to him being on formula was my sudden realization that now I did not have to be the only one doing middle of the night feedings!  The Geek could pitch in, too!  You don’t need boobies to hold a bottle, after all!  So he’s getting less sleep, but I’m getting a LOT more, and that makes me happy.  Which makes him happy, of course!

Mr. Happy’s poop was really gross and smelly, which is always a shock after breastfeeding for so long.  The Neocate, by all reports, typically does this to babies poo.  It’s greenish-black and sticky, and very, very stinky.  But other than being disgusting it looked like it was supposed to look, and that’s all that really matters to us.

I spent every single spare moment that week online looking up recipes for going gluten-free.  We didn’t have to be gluten-free precisely; but gluten-free means wheat free, and we needed to be wheat free ASAP.  It was just easier to look for a ‘gluten-free’ label than to find out how to eliminate wheat, believe it or not.  As time goes by, I was sure I could split those hairs and expand our diet some.  But for now, this was fastest and easiest.

I found a TON of recipes!  Most even sounded edible!  I learned so much about cooking and baking from reading the varied websites out there and I completely delved into a whole new world of functional allergy/intolerance sufferers.  It was an education, let me tell you!

In the end, I was left feeling burdened but capable of handling making the changes necessary to feed Mr. Happy nourishing, non-poisonous breast milk in a few weeks.  It was good.

And…it was false.

(continued…)

All the Babies Are Back in the Nest

 
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We woke up, made and ate breakfast, started tidying up the house, and then the Geek’s bosses wife called us.  Since we weren’t in the hospital any more, she wanted to go ahead with her plan to visit her sister in Little Rock and was wondering when we were planning to come pick up Mr. Charm.  Honestly, we were not planning on leaving him there as long as we did, but we were so tired, and we knew everyone was doing well at their house, so we were dragging a bit on our way out the door.  Suddenly, the dragging was over.  Quick showers and car loading, and we were off to pick up Mr. Charm.  (By the way, how AMAZING is this family?  K was willing to postpone a visit to her sister to help take care of Mr. Charm while we were in dire straights.  I cannot get over their generosity!)

I ran up the driveway to the house, and Mr. Charm saw me through the screen door.  He opened it, I knelt, held my arms wide open with a stupid grin on my face and shouted “Baby!” and he ran towards me with the most enthusiastic, joyful expression…then veered off and shouted “Bebe!” and ran for the car.

Talk about kick Mommy in the teeth!  (Not to worry; by evening he was hugging me again.)

We ran a few essential errands, one of which was to stop by the local chain pharmacy and rent a hospital grade breast pump.  If I’m going to be exclusively pumping for the next month, those are the way to go.

Finally, come nightfall, the whole family was safe, (relatively) healthy, and under one roof again.

Now came the time to start figuring out how to cook and what to eat…

(continued…)

Released!

 
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Tuesday I woke up to another set of doctor’s rounds with the gaggle of interns.  Out of the blue, they informed me that if Mr. Happy ate well this morning, as expected, he would be released that afternoon.  Say what?  I was dumbfounded!  Of course I wanted him to come home, but I really had no idea that he had improved so much he was approaching release.  The Geek and I were still anticipating spending the rest of the week in the hospital.  So it was astounding news, to say the least.

I called the Geek to share the good news, and soon after, T came back to supervise the first feeding.  It went great, so they removed the feeding tube permanently and Mr. Happy was back to being a normal kid who eats from a boob or a bottle.  So, so happy.

Then the nutritionist came in to see me.  She informed me that I needed to remove dairy, soy, egg, wheat, peanut and seafood from my diet for Mr. Happy.  Wowza!  After thinking about it for a minute, I realized that the only true challenge for me on that list was wheat.  I’m already dairy and mostly soy free, egg free is no biggie because we’re still basically egg free for Mr. Charm, we have to go out of our way to eat peanut or seafood, and so really, wheat is the only tricky item on the list.  Interestingly enough, I was able to give the hospital nutritionist/dietician a couple of website links and smartphone apps that she had never heard of that are very helpful to me.  So, she left feeling confident that Mr. Happy was in good maternal hands.

It was a comfort for me to know that Mr. Happy actually had diagnosable allergies, IgE allergies, because those are things I knew how to handle.  Even though there were so many of them, I was relieved and confident that things were on the upswing from here on out.

She also gave me two prescriptions for Neocate; one was written for WIC and one was a traditional prescription.  They wanted me to keep him on Neocate for 4 weeks before I attempted nursing again, both for my system to clean out and to give his system time to heal.  Neocate is wicked expensive.  I tried not to think about that at the time.

I started packing up and went down to have lunch.  Since I now knew that he had multiple food allergies that I would need to expunge from my system before I could nurse him again, I indulged a bit at lunch and had a slice of pizza and a battered chicken breast with asiago cheese melted over it.  Yum.  Honestly, it was good – okay, the pizza was excellent because who doesn’t love pizza – but at this point, I really can live without dairy!  I’ve only gotten to indulge in it for 3 months out of the last 2 years, so, it’s kind of normal now to not eat cow milk.  Still, kind of a nice treat to NOT have to pay attention to what I’m eating, or grill the cafeteria staff about every single ingredient in what I was about to eat for once.  The dairy wasn’t the treat; the nonchalance was.

In the afternoon I went downstairs to pick up Mr. Happy’s prescription of Amoxicillin, which they wanted him to stay on for the next ten days.  That hospital really is a maze.  I had to have an escort to get to and from the pharmacy.

Mr. Charm went to his follow up appointment at 12:45 p.m., and basically the doctor asked about Mr. Happy the whole time.  So, the Geek was annoyed.  He left and dropped Mr. Charm off with his boss and his wife.  Even though we were returning that night, it seemed cruel to force Mr. Charm into his car seat for 7 plus hours when we had someone perfectly lovely to watch him and let him run and play.  Since we weren’t going to be getting home until late, they agreed to keep him overnight, too.  LOVE the Geek’s boss!

Before the Geek even hit the road, they were ready to release Mr. Happy.  They just let us stay in the room longer because we really had nowhere to go.  So we watched “Toy Story” on TV and cuddled in the chair.  It was nice.

The Geek arrived and we called for someone to help us haul our stuff downstairs.  (With so much experience in hospital stays, we had an ice chest for drinks and snacks, a couple bags of snacks, plus our luggage, PLUS the wedge pillow that we didn’t realize until that moment that we owned!)  We loaded up the car and realized that neither of us had eaten dinner, and I had a month to clean out my system.  So we decided to live a little. We headed off to Outback Steakhouse for a non-restrictive meal (though this is a restaurant I can recommend visiting if you have food allergies.  They’re very accommodating).

We had Spinach and Artichoke Dip for an appetizer, I had a fairly safe meal of steak with coconut shrimp (grilled was better, though).  I even (gasp!) imbibed in a cocktail.  Since I don’t drink much, I thought it would taste like old memories.  Instead, it just tasted bad.  Then we stopped by Sonic for a gigantic chocolate milkshake.  Sigh…milkshakes are one of the harder things to live without when you go dairy free. I know I can make them at home with coconut milk ice cream, but it’s such a treat to stop in somewhere and just order a milkshake on a hot day.  Alas…our hedonistic streak over, we headed for home.

We arrived after midnight, unloaded the car, got Mr. Happy off to bed, and tried to make enough order out of the mess that remained to be able to function.  Then, off to bed.

Infant/Toddler Unit

 
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I woke up in the morning to discover that sometime in the night, Mr. Happy had decided that he no longer needed to be on oxygen.  He had pulled the canula out of his nose and it was over his head like a headband.  The nurse saw this while I was sleeping and decided that since no one knew how long it had been that way, Mr. Happy might be okay without a constant O2 feed, so he left it off and monitored him.  Surprise!  The baby knew best, after all.  He did just fine on room air; his O2 levels were holding at a steady 97-100 on the monitor.  So that was one more tube removed from him.

Mr. Happy resting in the ITU, sans O2 canula. What a relief!

Arkansas Children’s Hospital is a teaching hospital, something we really hadn’t seen much of to this point in our experience.  But in the ITU ward, every interaction I had with a doctor was actually an interaction with the Doctor In Charge of Mr. Happy’s care, and about ten interns that followed him around and got grilled on the situation.  It was a bit unnerving, actually.  Other than the one visit per morning with the Head Doctor I never saw him again.  Instead, we had two interns who were more directly involved in Mr. Happy’s care.  So on those morning rounds, I never knew exactly to which doctor I was supposed to be addressing questions and concerns!

In fact, once we arrived in the ITU, I noticed a distinct difference in the attention we received.  It may have had something to do with the fact that Mr. Happy was improving so well, but I also think the disorganization of the new ward played a part.  I spent most of Monday completely in the dark about Mr. Happy’s status, what tests were being done or results pending, and what the game plan was for the next step of his treatment.  It was disconcerting after our experience in Intermediate Care, where we were updated almost hourly with that information.

This wing had been opened so recently, apparently hospital management had not caught on to the fact that the new wing was, from all reports, the size of a football field.  Several of our nurses and techs laughingly said they were going to get pedometers to track how much they now walked at work.  That stemmed from the fact that each nurse was assigned 4 patients at a time, but management had, thus far, been assigning them at all four corners of the wing.  So much of the staffs time was spent in travel back and forth between rooms.

Also, no one really knew where anything was.  At one point, Mr. Happy’s feeding tube starting coming out (bad thing) and when I went to get the nurse, there wasn’t a staff member for 100 feet.  Not kidding.  I yelled for someone (they had not given me a tour of the new room, so I didn’t know where the nurse call button was located) and ran back in to hold the tube in place.  When the nurse arrived and saw what needed doing, she left to get the adhesive tape to hold it in place.  It took her almost ten minutes to find it and return.  This being her first shift in the new wing, she didn’t know where the tape was stored.  Apparently, it took her awhile to find someone who did.

The hospital was so excellent in so many ways, I’m positive that they are correcting the staff assignment problem quickly.  And in short order, I’m sure everyone will learn where supplies are located.  So, I don’t hold it against the hospital in any way.  It’s just that this was the situation we experienced at the time, and it did make things a little frustrating sometimes as a patient.

Anyway, late in the afternoon on Monday I got a visit from the Pediatric Gasterinterologist.  He came in to discuss Mr. Happy’s tummy.  That’s when I first heard that the current theory, and the one that so far had held the most weight, was that Mr. Happy had serious food allergies.  (They had speculated on Sunday, but not confirmed it as the current theory.)

I must say, I L-O-V-E-D talking to that man!  Ever since Mr. Charm came down with food allergies, I’ve been reading everything and anything I could find that was in layman’s terms to help me understand and deal with the issue.  I joke that in the last two years I’ve given myself an unofficial Associates Degree in Food Science and Allergies, and as a consequence, most of the time when I chat with someone about these issues, I wind up teaching things to them.

It’s not a problem to teach things to people; I actually went to college to be a teacher, so I LIKE sharing new thoughts with people and educating them when I know something they don’t.  However, I rarely get to talk to someone who already knows what I know AND can teach me knew information.  So talking to Dr. G was a thrill!

So Dr. G explained some more about IgE and non-IgE mediated allergies, which basically I knew, but he fleshed it out quite a bit for me.  It breaks down like this: IgE allergies are the ones people think of when they think of allergies.  They are the ones you can do the prick test and the RAST test to discover.  They are the ones that result in anapylactic shock, usually.  But there are other ways to be allergic, and those are called “non-IgE mediated” allergies.  They will not show up on most tests that science currently employs, but you will know they exist from observation and experience.  They tend to show up with intestinal, respiratory, and other such non-specific symptoms.  They are often overlooked as allergies simply because they can so closely resemble other conditions.

Example: when I went egg-free for Mr. Charm, I didn’t eat eggs for over a year.  After I could eat eggs again, I noticed that I often had a cramping, many hour long tummy ache after eating them.  THAT would be a sign that I probably have a non-IgE mediated allergy to egg.  For me, it’s mild, and only presents when I eat straight egg, not things with egg baked into them.  But it’s an example.

So, Dr. G explained, he could care less what the test results came back with, unless they came back with a positive result.  That would be a clear-cut allergy.  But even if all the results came back negative for allergies, he was confident that Mr. Happy was in the hospital because of his allergies.

I was willing to accept that diagnosis, but still wondered to him “How on earth could allergies cause pneumonia?”

He gave an explanation, and then asked the simple question “Is there anyone in his family that has or had allergies?”

Well, yeah.  That would be me.  When I was a child I had terrible problems with ear infections, sudden, unexplainable high fevers, a sharp, barking cough, and a few other symptoms that eventually led them to send me for Cystic Fibrosis testing.  After two days of being tested in the hospital and finding out I was healthy in that respect, Mom and Dad were told to get me to an allergist as soon as possible.  They did, and I lit up like a Christmas tree for everything they tested me for: food, animal, and environment.  I spent something like 11 years on allergy shots, two shots twice a week.  As of three years ago, I had my first ever clean allergy test.  I finally outgrew everything at the tender age of 32.

And as soon as the story left my lips it was as if a lightbulb went off in my head.  Before he even said anything I asked him “Allergies can present with intestinal and respiratory problems, right?”  “Right.” He said.  So, Mr. Happy takes after dear old Mom in this respect, for which I am truly sorry.

Apparently, Mr. Happy had some kind of minor infection that he was fighting off all on his own.  But his allergies were getting increasingly aggravated by my breastmilk, and eventually his immune system couldn’t fight it anymore and the infection spread to his lungs and turned into pneumonia.  The bloody stools were the symptom, like Mr. Charm, of his intestines and colon being aggravated and irritated by the allergens the milk was putting into their bodies.

So, yes, I now had an answer.  Despite any test results that came back, Mr. Happy has food allergies (at the least) and THAT was what got him so sick, so fast.

Sigh of relief.  I can handle anything as long as I know what it is. The unknown was the scariest part of this whole experience.

Still, I waited anxiously for the RAST results.  Again, I want to know.

Shortly after Dr. G left, the nurse came in and said that Dr. S (head doctor) wanted someone from Speech to come in and supervise a direct feed for Mr. Happy.  Speech therapists also work to make sure infants have correct latch, sucking and swallowing reflexes, and can generally sustain themselves through bottle or breastfeeding, a little fact of which I was previously unaware.  Since Mr. Happy had not taken anything orally since Friday at 4:00 a.m., they needed to make sure he could eat before releasing him from the hospital.  So this was to be a test run.

T from Speech came in to see us in the early evening and fed Mr. Happy a whopping ounce of formula from a bottle.  He latched on to that bottle and sucked it down with no problems.  So then we had to wait to see how his stomach would react to having food, and T said that if he did fine, he would be back in the morning and they would remove the feeding tube and begin normal feeds.  Hooray!

So Monday was spent mostly hanging around the hospital, getting sporadic good-news updates, and going out to get food because the hospital system had decided that I was no longer a nursing mother due to Mr. Happy being on the Neocate.  I chatted with the Geek, and Mr. Charm was doing great.  They expected he would be released that day.

The Geek’s boss, B, came over to visit Mr. Charm in the hospital that morning.  After hearing of our predicament, this wonderful man volunteered to let Mr. Charm stay with him and his family until we were back from Little Rock.  We leapt at the opportunity.  He is, hands down, the BEST boss I’ve ever heard of, let alone had the pleasure of dealing with in any way.  His wife and twin girls are as sweet as can be, too, and I knew Mr. Charm would be quite happy with two pretty little girls to play with until we could get back home to him.

Sure enough, Mr. Charm was released Monday afternoon with a blood sugar testing kit and a follow-up appointment with our pediatrician for Tuesday at 12:45 p.m.  Which, irritatingly enough, meant the Geek wouldn’t make it to Little Rock until early evening on Tuesday at the earliest.

No matter; my sweet boy had rebounded quickly and completely and was going home!  I was thrilled!

Intermediate Care Ward – Day 3 (Both kids in the hospital!)

 
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For some reason, I woke at 6:15 a.m. and couldn’t go back to sleep.  So I got up, pumped and dumped, cleaned the pump equipment and was heading into the shower at 7:15 a.m. when Mom called me.  She immediately asked me if I was awake, as sometimes when she calls that early I’m still too fuzzy headed to think clearly.  I told her I was, and she delivered some upsetting news.

Turns out, my Aunt had somehow left her diabetes medication out where Mr. Charm could get to it that morning.  Mom was, apparently, in the kitchen cooking breakfast, and my Aunt had walked away for a moment, when she returned and saw Mr. Charm at her medicine.  Two pills were missing, but since they didn’t witness him swallowing them, they spent time looking around to see if maybe he had just dropped them.  They were debating on what to do, whether to test his blood sugar to see if it was affected, or to just take him to the ER.  Mom didn’t want to rush him to the ER if it wasn’t necessary, as she didn’t want to compound our medical bills.

I interrupted her at some point in the story and asked “Why are you calling me?  Call poison control!”  Mom said that they had, and poison control informed them that one of the pills shouldn’t be a problem, but one of them would be dangerous if ingested by a toddler.  So I asked her, again, why they were calling me and not on the road to the hospital already.  That’s when she explained the part about not wanting to compound our medical bills unnecessarily, and I informed her that this was MR. CHARM we were talking about – of COURSE he swallowed the pills!  I said to take him to the hospital NOW.

So she said OK and hung up the phone, and I woke the Geek up to tell him the news.

We came up with a quick Plan C.  Mom and my Aunt were re-packing the car the day before to provide things that we would need for an extended hospital stay that we had not bought at Wal-mart.  Since the SUV was not heading back to Little Rock that day, and I would be left without a car once the Geek left, we headed out of the hospital within 5 minutes of my hanging up the phone with Mom.  One terribly quick trip to Wal-mart later, we were back at the hospital, the Geek was helping me unload the stuff, kissing us good-bye, and heading out the door.

While we were running that quick errand, I was on the phone with Mom as they got Mr. Charm checked in to the ER at our local hospital.  I thought it wise, since they had no paperwork saying they had authorization to do anything with Mr. Charm, to be on the phone in case of any questions or permission necessary from the hospital.  It was gut-wrenching to listen to him scream over the phone as his IV was put in, and to be so far away and incapable of even hugging him.  I’ve never felt so helpless in my life.

His blood sugar was checked in the ER, and a normal toddlers’ blood sugar should be no lower than 80.  His was 53.  They admitted him to the hospital.

I got off the phone while they went through admittance, and, for lack of anything better to do, tidied up the room.  I folded away my bed and re-made the one the Geek was sleeping on (it was longer, so he got it).  I took a shower and got dressed in clean clothes.  I ordered breakfast and ate.  I twiddled my thumbs, as there was nothing I could do for Mr. Happy, nothing I could do for Mr. Charm, nothing I could do for the Geek, Mom or my Aunt…nothing I could do at all!  The only thing I could think of to do was ask S, our nurse, about the medication Mr. Charm had taken.  She said that individually, poison control was correct: one pill was no biggie and the other could cause problems.  But taken TOGETHER, it was a much more serious situation.  I thanked her, and went back into our room to fret and feel helpless.

Once they were settled into their room, I spoke with Mom again.  In the background, I heard a nurse talking and I suddenly shouted “Is that L? Let me talk to her!”  So Mom handed the phone to L, who just happened to be one of the nurses in charge of Mr. Happy the night he was helicoptered out to Little Rock.

I think it’s a terribly bad sign that I already know nurses at the local hospital by name and voice, and not because we’re in the same book club, but because I’ve met them in their capacity as nurses.  Very bad sign, indeed.

She remembered all of us, and immediately asked how Mr. Happy was doing.  I told her that he was basically stable, and that they were simply doing a process of elimination at this point.  She told me she was praying for us and handed the phone back to Mom.

I let them go to pay attention to Mr. Happy’s doctor, who had just come in for a consult.  They had eliminated so many things that could be wrong with him, they were left with thinking it might actually just be food allergies.  His stool had tested negative for blood the day before, but sometime in the night it started testing positive again.  So they were switching him from breastmilk to Nutramigen, which is the formula Mr. Charm had to take.

His latest hemoglobin and hematocrit numbers had come back, and they no longer reported him as anemic.  His lungs were showing clear on some X-rays, still a little fuzzy on others, but essentially were slowly clearing up.  His respiration has slowing down, too, which was a very good sign.  They said that if it continued to slow down, and his O2 rate and percentage continued to drop (he was at a 5 and 100% then) they would move him to a normal room at the ITU.

So they decided to draw blood for a RAST test, which is the test they gave Mr. Charm almost 2 years ago at Children’s Hospital that told us he had an egg allergy.  For Mr. Happy, they had to draw 3.5 ml of blood, which doesn’t sound or look like a lot, until you consider the size of the baby it is being taken from!  I hated watching that.  It was necessary, though, because they had to take him off the Nutramigen by early evening.  With such a short amount of time on the breastmilk, they expected his stool to begin testing negative for blood quickly.  It hadn’t.  Not to mention that Mr. Happy was behaving just as fussy and irritated as he had been overnight.  So they put him on Neocate, which is an elemental formula.  Once on the Neocate, he immediately started calming down.  He wasn’t fussy or irritated, and almost immediately his stool stopped testing positive for blood.  Just.  Ducky.

So, the Geek got to the hospital at home, and somehow they figured out how to get Mom on her airplane, the Geek and the SUV at the hospital, and my Aunt on her way home, and Mr. Happy and I hung out in Little Rock.

It was one helluva morning.

After Mr. Charm was admitted into the hospital at a 53 blood sugar level, he continued to weaken.  Mom said he looked really bad about half an hour after they arrived.  He perked up quickly, though, as they immediately put him on a glucose drip.  Once they were in a regular room, they started bringing him orange juice to drink.  (The medication he took could have put him into a diabetic coma if left untreated.)  Mom put sugar packets into the orange juice to help speed up the raising of his blood sugar.

The Geek and I had to laugh at the irony of the situation: we don’t let Mr. Charm have ANY sugar.  EVER.  I have re-worked recipes to reduce or eliminate straight sugar in them.  One time we got to see him on a sugar high, and it was enough to convince us that this is a child who should never have sugar at all.  He makes the Tasmanian Devil (of Bugs Bunny cartoons) look tame on a normal day – on a sugar high, he reminds me of the squirrel (?) in “Over the Hedge” who was moving so fast it seemed like the whole world stood still around him when he got a taste of sugar.

And here he was, in the hospital, being pumped full of sugar to save his life.

Rule Number 1 as parents:  Never Say Never.

By the time Mom left the hospital, Mr. Charm’s blood sugar was at 125.  A short time later, it was at 153, and they removed the glucose drip and went back to water for him in order to let his blood sugar stabilize on its’ own.  So, things were looking pretty good for Mr. Charm.

And, they were looking pretty good for Mr. Happy, too.  They came to tell me that they were arranging to transfer him to the ITU, as his respiration continued to improve.  He was at 30% and a rate of 4 on his O2, and breaths per minute were steadily closer to the goal of 60 per minute or less.  Mr. Happy himself was looking perkier and more alert than he had been in days.  Things were stressful that day, but it seemed, in the early afternoon, that things were on the upswing at last.

The Geek and Mr. Charm spent the rest of the day in the hospital wandering up and down the hallways, sometimes with Mr. Charm riding in and sometimes with him pulling a wagon, with the Geek dragging the IV stand along with him.  Mr. Charm wanted to go into one room in particular that was occupied by a baby.  Whenever I talked to the Geek, I could hear Mr. Charm in the background exclaim “Be-be!” (no, he’s not French, he just says Baby in a way that sounds more like Bebe).  And the Geek would have to say – again – that “No, that’s not OUR baby” and they would walk on.  Until he passed the room again, and the whole exchange would happen all over again.  Mr. Charm is such a charmer, I constantly heard people in the background exclaiming over him.  Even in the hospital, with wacky blood sugar and an IV in his arm, my son aims to charm everyone.  He’s such an awesome kid.

Meanwhile, I packed up the hospital room as much as I could, and we waited until a room was available in the ITU.  Finally, at 8:00 p.m., we were moved.

New room, indeed; the ITU had been given a brand new wing of the hospital.  We were only the 2nd patients to ever stay in the room we were assigned.  Every person who worked with us for the rest of our stay reported to me that this was their first shift in the new wing; they’d gone onto days off and returned working in a new location.  (Consequently, things were a tad disorganized.  I’ll expound later.)

Ever since we had arrived in the hospital, we were constantly being told “You should see the new wing!  It’s like a hotel over there!” whenever I would compliment them on how nice the room was, or how comfortable the Geek and I were there.  So they really built it up in our heads.  And, it was nice.  But I honestly kind of liked the Intermediate Care wing better.  I got to know the nurses and doctors a LOT better over there, and I thought the rooms were just fine.

However, the rooms were very nice.  Top of the line everything, but as far from everything else in the hospital as you could get.

How’s that for a hospital room? High ceilings, large rooms, soothing, but bright colors…yep. Everyone was right. It’s like a hotel in the new wing.

For me, though, the nicest thing about the ITU was the fact that Mr. Happy had so many tubes and wires removed from him upon arrival.  The electrodes attached to his chest and stomach were removed right away, which was a great relief.  Now we only had to deal with the feeding tube, the O2 canula, the IV, and the pulse/ox monitor.  It made it a lot easier to pick him up and love on him.

A broader perspective. They had a lovely desk in the corner that I set up camp in with my hospital grade breast pump. The bed for me was right next to it, and there were actual closets in the hospital for parental use.

The bathroom. It’s huge! The tub was big enough I could actually fit into it without my knees in my nose. Above the toilet was a cabinet for personal items. The shower curtain rod is one of the curved ones that means the shower curtain won’t billow in on you while bathing.

 

View to the front of the room. Behind the curtain is another bank of cabinets. They are designed to open from inside the room, and the hallway. This makes it possible for the cleaning staff to replenish towels, washcloths, swaddling cloths, sheets and blankets and pillows, and to empty the linen basket, without disturbing patients in the room. On the right is a HUGE counter with a sink and a hidden garbage can. Swanky.

 

Once we got Mr. Happy settled in, the new nurse did his work and left me alone to get myself settled in.  I took the opportunity, while Mr. Happy was sleeping and there wasn’t anything going on, to go for a wander around the hospital later that night to get my bearings.  It’s a maze there, I tell you!  I came back to the room, pumped and dumped, showered, and headed for bed.

Meanwhile, back at our local hospital, Mr. Charm had finally crashed a bit from his sugar high, and he and the Geek were attempting sleep, too.

(continued…)

Intermediate Care Ward – Day 2

 
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We woke up to find Mr. Happy sleeping on a wedge pillow.  Apparently sometime during the night the nurses and doctor decided to elevate him to perhaps help his breathing.  We talked with the dayshift crew and find out the plan for the day.  They decided they wanted to rule out anything to do with his heart.  It seems that sometimes babies will have hearts that are too large for their bodies, and this can cause most of the symptoms Mr. Happy had.  So they brought in an X-ray machine, and also performed an EKG and an Echocardiogram. Then we had to wait for the results.

 

On the wedge pillow. He wasn’t happy about it, either.

The portable X-ray machine in the hospital is decked out like a Fire Truck. How totally cool is that? Everything in this hospital is designed with kids in mind.

Being X-rayed in the comfort of our own room.

Saturday was much the same as Friday in terms of watching and waiting.  The Geek had to leave for every meal and go to the cafeteria, but they were providing meals for me, as I was still – technically – a nursing mother.  I continued pumping and dumping to keep my supply up, and we changed diapers, updated people via phone calls, and waited for news from the medical crew.

A few times during the day, we were told that if his respiration didn’t start improving, they were going to move him into PICU.  The determination would be based on what level of O2 he was on, and how many breaths per minute he was taking.  Since arriving in the hospital, he had been on Hi-flow oxygen, which means that it is designed to shoot out at high speeds in order to bypass any nasal mucous and make sure it arrived in the lungs.  He was taking 100% oxygen, at a rate of 6.  If he could get down to 21-30% oxygen (21% is ‘room air’) and a rate of 4, he would be released to a regular room.  If he continued to need the higher levels and rates, he would be moved to the PICU.  Due to our long history with Mr. Charm and, now, Mr. Happy, in hospitals, this wasn’t as scary a newsbrief as it might have been.  Still, we didn’t want that to happen.

 

I can’t remember now what they were doing, but they needed him still for a few minutes for a test or exam. So they sort of straight-jacketed him with the swaddling wrap. Mr. Happy gave us lots of wide-eyed “what are they doing now?” looks during his hospital stay.

Saturday evening, they finally agreed to put in a feeding tube.  He hadn’t eaten in so long, and was crying in hunger.  We were anxious and frustrated that we couldn’t feed him, even as I was pumping between 4 and 11 ounces at a stretch.  The tube went through his nose, down his esophagus, through his stomach and straight into his intestines.  The poor little guy would finally be getting fed, but he wouldn’t have the feeling of satiety that you get from having food in your stomach.  Still, it was better than nothing.  And finally my breastmilk was being put to use!

 

The yellow tube is the feeding tube going into his nose. The O2 canula also went into his nose. He spent a lot of time trying to rub his nose.

The bag on the right is saline. The bag on the left with the purple top is the breastmilk being ‘fed’ to Mr. Happy.

 

Shortly after the feeding tube went in, L called me in tears.  It seems that while she was still willing to watch Mr. Charm for us, she was getting terribly concerned about her ability to do so safely.  One of her grandsons has special needs of his own, and she was terrified that Tuesday-Thursday, when she had her grandsons’ with her, she wouldn’t be able to pay enough attention to Mr. Charm and he would suffer for it.  She was still willing to watch him on Sunday night, Monday, Thursday night and Friday, which was as long as we were currently coordinating care for, and she felt miserable that she was having to back out on us at a time like this.

I assured her that it was no problem, that I appreciated her even being willing to consider it.  Mr. Charm is a wonderful child, but the food allergies are scary, and I totally understood her fears.  Frankly, I was amazed that she had agreed in the first place.

Still, that left us scrambling to find a new plan.  We asked at the nurses desk, and they called the hospital social worker to see if they could find room for us at the Ronald McDonald house.  Siblings under age 16 are not allowed to spend the night at the hospital, so the idea was that the Geek and Mr. Charm would be with me at the hospital from 9:00 a.m. to 9:00 p.m., and I would stay with Mr. Happy 24/7.  They came back in a few hours with the answer: the Ronald McDonald house was full.  They gave us a list of hotels in the area that offer discounted rates to family members of Children’s patients, and we decided it might be cheaper if we could find one of those weekly rate hotels, since we didn’t know how long we would be in Little Rock.

So Saturday evening was a whirlwind of phone calls trying to figure out what to do and how to do it, as Mom had a flight at 2:30 p.m. on Sunday that she had to take.

Finally we decided that the Geek would drive back home Sunday morning in the car, and drive back to Little Rock with Mr. Charm in the SUV so we (and all our stuff) would fit when Mr. Happy was eventually released.

The tests on Mr. Happy’s heart came back negative; he has a perfectly perfect little heart.  So, keep watching and waiting, and Doctor L (the doctor coordinating Mr. Happy’s care) would tell us in the morning what the next phase would be.

Isn’t this genius? We didn’t have a pacifier clip with us, and his pacifier kept getting lost in the bed. S stuck a washcloth through the loop on the pacifier and suddenly we never lost it again! It also gave it some weight to help stay in his mouth more. Genius!

I pumped and dumped, we unwound and went to bed.