Day 4 - Continued

Day 4 - Continued

After I posted today's update, our wonderful nurse Alex came in as she was about to end her shift.  She hooked up Aidan's feed and stayed to talk with us about what was happening, since no doctor had bothered coming by to talk, even though we've requested it.  Is it really so unreasonable to want to know what we're doing?!  Anyway, Alex told me that a Resident would be up to talk eventually, but that if I wanted to talk with her, she'd be happy to share what she knew.  I appreciated it a lot, especially since no one ever found the time to come by.

Basically, Aidan would be taken off his feed at midnight.  He'd have a new IV placed and be put back on IV fluids for the GJ placement.  This is in prep for possibly having the GJ placed on Monday.  No one is yet sure that it can be done on Monday - it may not happen until Tuesday.  It just depends on when IR can fit him in and whether they agree to do it or not.  If it happens Monday, it sounds like we can maybe expect to go home Tuesday or Wednesday - depending on how he tolerates J feeds.  If it doesn't happen until Tuesday, then we're looking at Wednesday/Thursday, again depending on how he tolerates the J feeds.

It didn't exactly go as we were hoping.  Around 10, the IV team came in and spent half an hour working to place a new IV - only to blow the vein and find themselves unable to locate another one. So off they went to discuss their options.

The New Plan is this:

Aidan continues on full strength feeds until midnight.  He will be switched to Pedialyte until 3am, and then he'll be NPO until the doctors decide what they're going to do.  That will probably happen during rounds - which start at 8am. 

So I won't be here to actually hear what The New Plan is.  I have to get out of here as early as possible to get to work.  I absolutely hate leaving Aidan here but especially since I can't VPN in from CHOP, I need to get back to the office and have a really productive day.

Day 4 - Still Inpatient & Happy Easter!

Day 4 - Happy Easter!

The Bunny did not disappoint!  I'm told that he schlepped home late last night to bring back Aidan's Easter Basket so that we wouldn't have to miss out on the holiday.

I think because Aidan can't have candy, The Bunny feels a little bit guilty and may or may not get a bit more stuff than Aidan really needs.  But at least it's contained in one basket - Facebook would have me believe that Easter is reaching Christmas proportions nowadays!

Aidan got a new pillow pet (Deetz (Biscuit) has seen better days, and really, can you ever have enough pillow pets?), a stuffed bunny, a stuffed platypus, a stuffed peep, an Easter book, a CD of kids songs for the car, a Superman coloring book, Superman pens, a new toothbrush, toothpaste, and a slew of rubber ducks.  Also - the biggest hit EVER - Superman shoes!

Noo-Nah!

The shoes were enough to encourage him to get out of bed and run around for a couple of hours.  He's off his IV because it clotted up yesterday and no one could get it to flush, so our wonderful day (Alex - we love her!) just pulled it.  It was doing him no good anyway, and now he has his arm back!

Today, we are up to full strength Elecare Jr.  My fingers are crossed, I guess, although I don't even know what I'm hoping for.  I hate seeing him miserable and vomiting.  But I also hate seeing him tolerating the feeds like everything's fine, when I know that everything's not fine and hasn't been fine in months.  I'm afraid that he'll tolerate feeds okay here because he had such a long break from them, but by the time we get home he will be back to his pukey self and we will have accomplished nothing.  We are still waiting to hear whether or not IR will place the GJ tube.  I think the GJ is the right move, but Tom doesn't want to do it.  The doctors want to do it but aren't sure he's healthy enough for IR take him.  We'll see how it all shakes out, I guess.

In the meantime, we had a fairly quiet day and full strength feed were tolerated pretty well.  He's getting the less tangible symptoms - the reddish cheeks, the coughing, the tantrums immediately after feeds - but he's not vomiting.  So I guess they call this "good enough"?

Day 3 - Inpatient, Frustrated

Day 3 - Saturday.  We expected to be really just treading water, waiting for Aidan's hMPV to improve and very anxiously awaiting surgery on Monday.  Overnight was a little bit crappy since Aidan needed his IV checked every single hour.  But so far, we're really successful on the Pedialyte feeds.  Aidan's perked up a lot since he's started keeping down the Pedialyte.  Which means he's less willing to let the doctors and nurses do their jobs.  But also it means that we're able to take him off the IV fluids.  He's finally making very wet diapers - actually, he soaked through his diaper and sheets overnight.  I'm just happy to see him so hydrated!

In Hospital-Speak, I find Rounds pretty fascinating.  A huge collection of doctors, nurses, and whoever else seems to be milling about goes from doorway to doorway talking about children but never actually seeing, touching, or talking to them or their families.  Today, I decided to join in when Rounds made it to our room.  I guess I'm glad I did - here's what I found out:

- We are cancelling Monday's surgery.  They feel that the scopes are elective and he's too sick for it to be safe.  When I asked how long it would be before he's safe to be put under anesthesia, the doctor said that they liked to wait "at least a week or two." So no answers for a few more weeks on whether what we're feeding him is even safe for him.

- We may not be having the G to GJ conversion on Monday either.  Interventional Radiology can do the procedure without sedation, but only if the patient is "very cooperative."  Which this patient isn't. 


So now The Plan is out the window and I'm frustrated and I feel helpless.  I don't know what we're going to do.  I don't know how long we'll be here.  Maybe they'll send us home tomorrow.  Maybe they'll keep us longer and actually try to help us.  I really don't know.  I am angry that Aidan picked up this virus because now the doctors feel justified saying that everything is the virus's fault. 

Our nurse, Alex, let me have him weighed on the baby scale instead of the standing scale.  11.115kg.  Almost 24.5 pounds.  So I'm not as alarmed, although he certainly has lost weight - I just think the standing scale wasn't very accurate for him.  He's just not good about standing still on it yet.





Today's Feeds:

9am - Pedialyte - He did fantastic!
noon - 1/4 concentration Elecare (52.5 calories) - This one went well too.  He mostly slept through it.
4pm - 1/4 concentration Elecare (52.5 calories) - No vomiting, but his cheeks did start to redden during the feed.
7:15pm - 1/2 concentration Elecare (300 calories) - This was set to run from over like 10 hours, so we'll see, but it's been going for several hours and so far so good. 

I guess my fear is that he will do okay with his feeds for a little bit and we'll go home, but then he'll go right back to where he was and we'll be no closer to answers.  We've definitely had days where he tolerates daytime boluses and even the first few hours of night feeds, but by the middle of the night, everything's gone to hell and back again.  I want him to be better - not just "good enough to send home."

Tomorrow I guess we'll continue half strength Elecare and hopefully confirm the Tube Change.  Tomorrow is Easter, so I'll definitely take pictures of what The Bunny has left.

Day 2 - Inpatient & Sick

Today started for good around 6am when Nurse Daniel came in to give Aidan his enema in preparation for surgery. We had results within a few minutes and it was a little bit exciting because it's a step in the direction that we need to go - surgery, biopsies, and hopefully answers.

Megan came around 7 and we were really happy to have her.  CHOP cribs are way less lonely when you have company.

Around 8:30, the Pediatrician and the GI Attending came in to discuss The Plan, which was indeed to have surgery sometime in the afternoon (Upper and Lower Endoscopies with biopsies - woohoo!).  We discussed the results of yesterday's Gastric Emptying Study (normal) and what the next steps were. 

It kind of boils down to this - the emptying study is not showing that motility is the problem.  If we wanted to, we could still treat with motility and/or nausea drugs - but given the normal emptying study, it's not super likely that it would help.  In my mind, this means the problem is either a reaction to what we're putting in (the formula), or the inability of the stomach to do its job - not because of delayed emptying, but for some other reason.

So we're going to try to act on both of those possibilities.  The scopes and biopsies should give us some information on what the formula is doing to his body.  We won't have that information for several days at least - but it will be really good to know.  To get to the issue with the stomach, we are going to change his G Tube to a GJ Tube.

The pros of a GJ tube - it feeds in directly to the intestines - which are below the stomach - so it's nearly impossible for him to vomit his feeds.  There just won't be anything in his stomach to vomit up.  He can still drink water by mouth if he wants to, but feeds that we run in via pump will go right into his intestines.

The cons - It sounds like we'd have to be a little more careful with it.  While a G Tube can be turned around in the stoma (like an earring), the GJ Tube needs to be kept stationary.  Also, we won't be able to do our own button changes - we'd have to come down to CHOP every three months to have Interventional Radiology do it.  The bigger deal is that Aidan would need to be on a continuous feed for about 20 hours per day.  Twenty.  Of twenty four.  So, like, always.

Anyway, the cons are minor compared to his inability to keep nutrition in his body - so we're going to move forward with the procedure at the same time as the scopes/biopsies.  We're told that if it doesn't work out, we can pull it and put his G-Tube back in - no additional surgery or procedure required.

In the meantime, Aidan is sick and getting sicker.  He is spiking fevers (102.5+) out of nowhere - his skin gets BRIGHT RED and he's so hot to the touch that I don't know how he's not hallucinating.  They took a sample of his nasal slime and sent it off to be tested, so we're on contact precautions and droplet precautions until we get results tomorrow afternoon.  That means that any CHOP staff coming in needs to wear masks and gowns to avoid his possible plague.

Respiratory has been in to listen to Aidan, but his lungs sound good despite all of the coughing.  Which means the wheeze is coming from higher up and he doesn't have anything settled down into his lungs yet.  This is good.  But still, he's wheezing.  And his energy level is minimal since he's getting no nutrition whatsoever.

So it wasn't a total shock when, around lunchtime, the doctor came in to let us know Aidan was too sick for surgery.  And since it's not an emergency surgery, it can't be rescheduled until Monday.  It's frustrating but I want him to be safe - and if they can't safely put him through surgery yet, I'm on board with waiting.

Nutrition stopped by to chat a bit about what we'll do once we're ready to start J feeds.  I guess we'll stay with Elecare until we get biopsy results back.

The plan for the rest of today is to keep him on IV fluids, treat the fevers with tylenol, and start trying pedialyte bolus feeds.  The first pedialyte bolus (4oz over 2h) went well - he kept it down, although about fifteen minutes after it was done, he started getting hot and feverish, with a more pronounced cough and bright red cheeks.  He didn't throw up, so I guess we'll take it.  The second feed (also 4oz over 2h) was even better - no reaction at all, that I noticed.  So we'll do one or two more tonight.

I have been trying to get as much work as possible done while we plan for the next several days here.  We're all tired and anxious but he's in the right place.  We're just trying to work out who is coming when and who is staying where, and it's all the harder because we just don't know what to prepare for.  If he has surgery on Monday - will he go home Tuesday?  Wednesday?  A week later?  Who knows.

Tom was here for a few hours this afternoon/evening, and Aidan was really excited to see him.  I hope Aidan's not too disappointed when he wakes up and Tom's gone later tonight :-/

Oh!  We did get results of the snot test - Aidan has Metapneumovirus (hMPV).  Not super serious or anything, but very contagious, so we stay on contact precautions.  I guess I need to ask what, if anything, that diagnosis means for surgery on Monday.  I'm not sure exactly how long he's been sick or how long hMPV takes to work its way out of the body - but I really hope that by Monday we're firing on enough cylinders to make surgery safe.

I guess I should get some sleep while I can - the doctor comes in at minimum once every hour to check Aidan's IV since we came so close to losing it last night.

Day 1, Part 2 - Tests and Plans

The second half of Day 1 was just as eventful as the first half.  On admission to the floor, Aidan was weighed, and we found out that he's down to 10.3kg.  He was 11.5kg on Monday.  That's over 2.5 pounds lost in two days.  While no one in the universe but me stresses over this, Aidan relaxes in a bed that he can't fall out of.

 I busy myself trying to be entertaining, but even my hugely successful glovey-balloon falls flat.  Tough crowd.

At noon, his IV fluids are upped from 40ml/h to 41ml/h.  This passes for news around here, because the pumps are brand new (like, this is the first day anyone's used them) and nobody really knows how to work them.

Ooh.  Aah.  Shiny newness.

Nikki left around 12:30 and not 15 minutes later, GI came in to discuss The Plan.  We will be doing a Gastric Emptying Study, and possibly a repeat scope, and possibly changing the G-Tube to a GJ Tube.  I have no idea why we're only possibly rescoping.  I will be pushing hard for this.  Not during this conversation though, because we're literally mid-sentence when the Attending is paged, and he left.  He told me that he had "another patient" and he'd "try to stop back in."

Around 1:30, Megan arrives, and Aidan rejoices.  We talk and catch up and get ready for the Gastric Emptying Study.  I snapped a picture of Aidan relaxing - and he looked pretty good.  Calm, relaxed, not pukey.

Not half an hour later, as we head down to Nuclear Medicine for the Study, we notice that Aidan's getting very red.  He's also getting really cranky and whimpery, and hot. 

Note the Allergy Cheeks starting up. 

The Gastric Emptying Study was traumatic.  For me, mostly.  I think Aidan was too far out of it to really understand what was happening around him, but basically they strapped him to a table and pushed in Elecare laced with Radioactive tracers.  We would then get an hour and a half's worth of imaging to see where the feed goes (and how quickly).  This way, we can tell if he's aspirating anything, or if the stomach isn't moving things through quickly enough.

No energy left to fight his restraints, poor kid

The doctor ordered 6oz of Elecare for the test - but as they pushed in the third ounce, the vomiting started.  At ounce four, they decided to stop administering the Elecare - he clearly wasn't keeping it down.

Radioactivity?  VOM!

The most disturbing part was that he was strapped to this table while vomiting - totally unable to lift or turn his own head.  I'm pretty sure I'll have nightmares about this forever.

 By the time we got back to 5 South, Aidan was feeling pretty miserable.  We had a new inept nurse, Dayna, and we strong-armed her into ponying up some Tylenol.  I hate hearing him whimper with every single breath.  Just not okay.

Around 6:15, the pediatrician working with the GI Attending came in to see me, and I complained about the Attending blowing us off.  She asks how much of The Plan I'm aware of, and I said that all I knew was the Gastric Emptying Study, which we've now already done.  Are we now planless?  We're not, she assures me, we're scheduled for an upper endoscopy tomorrow.  Um, no.  Just no.  We're not doing upper only.  Not when his disease lives in the lower, and his GI has always done upper and lower together.  I warn her that I won't be giving up without a fight - I feel very strongly about also doing lower.  She says she'll "take it back to the team."    I'm expecting a Battle Royale.



Around 8, Nurse Dayna decides it might be fun to start feeds.  I disagree.  I explain again that he couldn't even tolerate the 3oz needed for the Gastric Emptying Study.  Another 7 ounces seems stupid to me.  She eventually agrees to keep him on the IV, and keep him NPO after midnight in case GI agrees to add the lower scope to tomorrow's plan.

We are tired beyond tired, so Aidan and I both try to pass out.  It works better for some than for others, for sure.

Around 10:15, I'm startled awake by a new nurse (Daniel?) who calmly explains that Aidan may have blown his IV, but they're calling the IV team to try saving it.  The IV team arrives in the form of one tiny lady named Mimi - but who am I to complain - she saved it!

At the same time, Anesthesia stops by to confirm him for Surgery tomorrow (they only know about the upper - grr - we WILL be doing both!).  I'm so tired at this point that I'm not even sure whether or not I signed consent.  I must have, because he eventually left.

Around 1:30am, Aidan spiked a high fever again, and even with Tylenol, he spent the next 2.5 hours screaming.  Screaming to be held, screaming to be put down, screaming for water, and just screaming for the sheer pleasure of it (okay probably not really.  But I'm so tired that I'm starting to hallucinate.  It feels like he's screaming for fun.).

I'm desperately hoping that tomorrow brings some sleep.  We both need it.

Day 1, Part 1 - Emergency Department & Admission

Day 1 kicked off in the wee hours, as we were brought to our ER room just after midnight Wednesday night/Thursday morning.  After about two hours of vitals-taking and nothing-doing, we had a plan.  Get an X-Ray (to check on tube placement) and get a Dye Study (another check for tube placement).  Meanwhile, Nurse Tim confirmed that CHOP can't come up with any dye-free tylenol or motrin (This is why I bring my own) and took our stash with him to be verified by the pharmacy.

note the totally unofficial drugs in the background

So off we went to Radiology around 2am, and boy did he love that.  Except I'm totally kidding, because he hated it.  Back in Room 11, Nurse Tim showed up to take some samples to test for blood in stomach contents and stool.  Negative for both, whew.  The X-Rays came back and indicated proper placement of the tube, so we went back for a dye study around 3:30am - I guess it's a more reliable way to check placement?  That one looked good too - no issues to report, except maybe that he had some constipation.

Gee, I hope nobody sticks anything awful up my diaper area...

Never fear, Nurse Tim is here.  With two enemas.  At 4am.  Holy mother of god.  I'll spare you the gory details - suffice it to say that a change of BED was required. 

Not sleeping at 4am

Around then, I emailed my boss to let her know that I was still in the ER and wouldn't make it into work.  Panic is starting to set in, because this situation is chillingly familiar.  I need to still be employed at the end of this hospital stay.

The boy nods off briefly at 5am.  And yes, those are "Taddy Shoes!"

Sleeping like a baby.  A baby who is likely to poop the bed.

Not having slept in days - like, literally days - I finally nodded off in the pooped bed, only to wake up at 5:30 because some doctor is holding a phone in my face, saying the GI on call wants to talk to me.  I wish I'd written down her name - the conversation wasn't good.  The gist was that she didn't think we needed to be in the hospital, and the best thing would be for us to go home and see our own (CHOP) GI on Friday.  She asked me, point blank, "Really, what's your concern here?"  AYFKM?  My concern is that my child is both dehydrating and starving to death.  My concern is that I can't provide care for him anymore.  My concern is that NO ONE IS HELPING ME.  I said that while I wasn't opposed to going home, because home is awesome, I WAS opposed to leaving with a child that I cannot feed.  Especially when our own GI's office told us that in all likelihood, they would be unable to help us much in the office, and that we belonged at the hospital.  Out at Exton, our own doctor can order tests.  Here at Main, these doctors can actually perform them.  I put my foot down.  We aren't leaving without answers.  You have to help us.

So we agreed to try some feeds.  Around 7am, we had a 2oz Pedialyte feed.  It went okay - and at this point I was a little bit worried that they were going to think I was a crazy hypochondriac.  At 8am, right at the tail end of the Pedialyte feed, we started a 7oz Elecare feed.  Half an hour or so into that feed, the doctor came in to check on us.  Aidan was sleeping restlessly, but not crying and certainly not vomiting.  So far so good, I reported.

Doctor Disbelieving wasn't three steps out the door when Aidan bolted upright in bed, coughed, and spewed forth EVERYTHING.  Thankfully, my bucket-grabbing reflexes are getting pretty good these days.  Nikki went for the nurse, and it took half a glance at Aidan filling his puke bucket for her to confirm that he'd be admitted.  Doctor Disbelieving couldn't argue at this point.

The nurse placed an IV, drew blood for labs, and started fluids.  As this was happening, I started to notice that, as usual, Aidan's body was reacting to the feed and the vomiting.  He gets bright red cheeks, a cough, a runny nose, and his body gets hot.  VERY hot.  A temp check clocked him in at 102.5, and a dose of motrin (and an hour later, a dose of tylenol) did little to bring it down.  Poor bugaboo.

Elecare out, IV in, waiting for a room

We hung out in the ER until about 10am, waiting for a room and a crib - and finally - TRANSFER TIME.

Day 0 - To the CHOP ER

It's been several weeks since feeding has gone "well."  I almost can't remember a time when it wasn't at the forefront of our minds - except that I know that it used to work, and it worked well.  The Feeding Tube is the best thing we've ever done and whatever has gone wrong will be fixed.  We will have our lives back eventually.  I digress.

Although it's been many weeks (months) since things have gone well, it's really been in the past week or so that things have gone sharply downhill.  The Elecare that he was tentatively tolerating is no longer tolerated.  He vomits every feed, no matter what we feed, even if it's just Pedialyte.  This isn't sustainable at home anymore, and it's clearly time for us to get more help.

I had such a busy day at work that although I knew he needed to go to the ER, I wasn't able to take him until evening.  So it wasn't until 9:40 that the crazy vomiting started and we headed down to CHOP's ER.  We got here around 10:50 and Aidan weighed in at 11.1kg (with shoes and clothes).  It took until midnight for us to get into a room (ED room 11) with Nurse Tim.  We think we like Nurse Tim.

So Day 0 was short.  Day 1 was a lot more insane.  Possibly the longest day of my life.  More to come...

Neo-Gate 2013 - Are you sick of my updates yet?

I'm sorry that I have nothing more exciting than this to write about.  Maybe I should - but I don't. 

We stretched our two cans of PurAmino out to last 3 1/2 days.  The household is kind of split on how we feel about it.  Tom thinks it's the best formula we've tried.  Megan has no opinion.  I think it's no worse than Elecare, but really no better either.  I think it makes him hyper and extra emotional, which I guess the Elecare does as well.  All other things being equal, I take equality as a reason to choose Elecare, because it's easier to get my hands on if (WHEN) Medco decides to delay our shipment for no apparent reason - as they've done EVERY three months since we've started these formulas.

The plan right now is to get him back on Elecare Jr. (CHOP - I'm coming to raid your samples closet) until we can get in to see Dr. Liacouras (GI) on the 29th.  I need to spend some time between now and then gathering my thoughts and coming up with a game plan (seeing Liacouras without knowing what you want from him is a disaster).  I think the game plan will include having him scoped and biopsied as soon as humanly possible.

In addition to the (IMO) obvious - ruling out any anatomical issues causing this sudden feed intolerance - My rationale behind the scope is this:

Possibility 1 - He scopes clean - Great!  Fantastic!  We keep him on Elecare Jr. and decide that the behavior changes we've seen since things with Nutricia went awry are not related to his EGID.  We can then turn our focus back to weight gain and feeding and speech work.  We can also donate our small stash of "safe" Neocate Jr. to children who aren't able to survive on Elecare Jr.

Possibility 2 - He doesn't scope clean.  Elecare isn't working.  We decide how best to stretch out the "safe" Neocate that we have and what to do as we move forward.

I'm cautiously hopeful for Possibility #1 even while I think Possibility #2 is the more likely scenario.  But it's a plan, and it's as far ahead as I can go right now.


No news yet from Nutricia about the testing done on the product that we shipped back to them.  We are supposed to hear something this week.  I doubt they'll find anything, but God do I hope they do.  It's insane to think of the lives that could be changed (infinitely for the better!) if this could be straightened out.

In other news, and this is really a post all of its own, I've been able to team up with several other moms whose children are affected by this disaster.  They've put me in touch with people willing to get us some safe formula at low cost.  There's not that much formula out there at this point, and it warms my heart that someone ensuring that no one goes without while there's still something we can do about it!

So as soon as we get Aidan to see his doctor, we can start him back on his safe formula  - at least a little bit, at least sometimes, at least it would be a break from what's making him feel so badly.  Some boxes of formula arrived yesterday and I cried (happy, grateful tears!) the entire time I was putting that precious powdered gold away.  I'm so thankful that people like this are out there, willing to help give my little boy a chance. 

This is what I'm fighting for.  This is why I'm doing this.  This is why I can't just "leave it alone".  He's sweet, and he's beautiful, and he deserves to be happy and healthy.

Neo-Gate 2013 - PurAmino

Neocate Infant was a NO - but our wonderful RD pulled another one out of her hat for us, and asked us if we'd like to try another Amino Acid formula called PurAmino.  I'd never heard of it - it's made by Mead Johnson and isn't as common or popular as Neocate or Elecare, but obviously we're willing to try it.

As a product, it's frustrating, because it's a 20 calorie formula.  meaning it comes with an itsy-bitsy scoop and no 30 calorie mixing instructions.  And where Neocate gives a page-long grid of 30 cal instructions (and Elecare at least provides "small", "medium" and "large" batch instructions) - PurAmino gives instructions for a quart or .77 oz.  Thanks.  Helpful.

But I got out my handy dandy notebook and did some (hopefully correct) math and Aidan spent Saturday and Sunday on PurAmino.

My impressions:

• It mixes really lumpy.  I'm not sure why.  I mix it the same way that I mix the others.  But this one's clumpier.  It hasn't mattered though, and as long as it's not causing pump alarms, I suppose I don't really care.
• I don't know how it tastes - honestly, we haven't been pushing oral intake with Aidan.  For better or worse, our efforts are focused elsewhere.
• It doesn't smell half as badly as Elecare. 

The really important thing is how he tolerates it.  So far, no throwing up.  Which is great!  But we're only two days into the trial, with about enough powder for another day and a half - so it's going to be very hard to tell if it's better or worse than Elecare Jr. in terms of his behavior and how he feels overall.  I hesitate to shout WIN from the rooftops, but it's not an abysmal failure like the Neocate Infant was, either.  I'd love to say that time will tell, but we just don't have the luxury of enough sample product.

Neo-Gate 2013 - Neocate Infant

After deciding that Elecare Jr. wasn't the best of all possible solutions, we decided to try Neocate Infant.  We hoped that whatever terrible thing happened at Nutricia was isolated to Neocate Jr.  (At this point, Yes, I believe something has happened.  Maybe Nutricia changed something knowingly.  Maybe Nutricia had a cross-contamination issue.  Maybe Nutricia changed a supplier.  Maybe a supplier changed something and never told Nutricia.  Maybe a supplier had a cross-contamination issue.  There are a thousand maybes, and I don't have answers, but I am 1000% sure that something is going on over there.)

Saturday morning, I excitedly woke up and cracked open the first of the three cases of Neocate Infant that Christine over at Nutricia sent us.  I have this huge grid that tells me how to mix it at 30 cal for a big strapping boy like mine, so not to worry about that pesky "Infant" word - we can make this work.

Things seemed mostly okay on Saturday, except that Aidan's cheeks seemed even redder than they were on Elecare, and his mood was even worse.  He slept through on Saturday night, but he whimpered a lot in his sleep, and I never take this as a terribly encouraging sign.

Sunday wasn't so good.  He threw up on Sunday morning about an hour after his breakfast feed.  We tried to chalk it up to over-excitement, reflux, or a fluke, but his emotional downward spiral seemed to confirm that it was likely related to what I was pumping into his body.  Again, he slept through the night, but he woke up very suddenly Monday morning just before 7am crying and vomiting.

By Monday, I decided that I'm not going to keep pushing him down this road.  Neocate just isn't working out.  I moved him back to Elecare Jr. Monday morning while we began to try to think of what to do next.  He threw up his breakfast feed, but my guess is that he's still working the Neocate out of his system.


Here's where I start making wild guesses.  Bear with me.

The bottom of a can of "safe" Neocate looks one way, and the bottom of a can of "unsafe" Neocate looks different.  We refer to this as the "Old Label/New Label" problem, but really, there is a subset of "Old Label" Neocate that still isn't safe for these kids.  "Old Label" Neocate is only safe if it was manufactured on or before April 25, 2012 (and expires on or before October 22, 2013).  There is at least one batch of "Old Label" Neocate out there that expires on 11/18 and it is NOT safe for Aidan.  The visual difference is on the stamp on the bottom of the can. 

The Old Can

The New Can

Both Cans

To me, this says that there was a process underway to change the packaging - can stamp included - that began with the batch that expires 10/28.  That batch got the new can stamp, but not the new label.  All later batches got the new can stamp AND the new label.  And all cans that were a part of this new packaging change - whether label, stamp, or both - adversely affect my son and several others.

Now if you look at the Neocate Infant, which did NOT undergo a packaging change, you will see that the can stamp is in the "New" style as well.

Infant

Aidan spent at least 3 months on Neocate Infant when he was younger - and NEVER did he throw up like this.  Not until Nutricia underwent this packaging change exercise.
 

Something is going on.  Something is just not right.  

Neo-Gate 2013 - A Week of Elecare

When last you heard, we were going to be giving Elecare Jr. a try.  Here's to a week of Elecare, what it's done for us, and where we are today...


3/1 - Day 0 - We received the OK to discontinue Neocate Jr. and begin Elecare Jr.  For the first night in more nights than my sleep-deprived brain can recall, we all slept.  Nobody threw up!  I was hoping it would help, but I didn't dare hope it would help this quickly!

3/2 - Day 1 - Maybe this isn't a fluke!  He didn't throw up!  This was a really great day, and it gives me a lot of hope that maybe - just maybe! - we have found a solution for Aidan.

3/3 - Day 2 - Still not throwing up!  Unfortunately, Aidan was a very angry baby today.  He woke up with a blistery bottom and was very screamy.  I'm a little nervous, but he's not throwing up, so can I really complain?

3/4 - Day 3 - This was a good day.  His mood was better, so maybe yesterday was some kind of anomaly.  A two year old being two.  Until midnight, that is.  Aidan woke up very suddenly and very angrily, screaming and arching his back.  He can't be refluxing, can he?  We're still on a PPI, even though I can't imagine anyone still thinks he needs it.  I'm starting to be reminded of food trials.  Specifically, the part where we fail them.  But it's so confusing, because most of the day is really good.  We'll keep up the reflux meds and keep going with the Elecare - because there's nothing else to try.

I spoke to Mimi at CHOP today and arranged to pick up more samples of Elecare Jr.  This stuff is seriously precious cargo!  Huge thanks to CHOP and Mimi, for continuing to work with us while we try to figure this out.  At least we aren't alone.

3/5 - Day 4 - Not as great a day, but still not terrible.  He woke up mid-nap screaming and refused to go back to sleep.  But I feel like it (might???) be safe to say that he's not throwing up his feeds anymore, which is a huge relief.  It tells me that it's not Aidan's little body failing him somehow.  It's Neocate.  Neocate failed him.  Which I guess we knew, but now I'm even more confident.  By bedtime, Aidan's cheeks were starting to look rashy and red.  This worries me...



The really nice thing is that now that Aidan's not throwing up constantly, he can eat on the go a bit easier.  Eating while running, jumping, and playing is now on the table.  He's begrudgingly getting used to the backpack - and I think it looks adorable on him!

3/6 - Day 5 - Aidan's got upper respiratory symptoms today.  He's been on his inhaler since yesterday.  He's sneezy and snotty and coughing.  We've had another little guy in daycare with him for the past few days, so maybe that's why, or maybe these are more symptoms that I need to care about while we figure this all out.  (I love playing "sick or just a toddler??")  Anyway, Aidan's face is still red and crusty today, which is a big part of his traditional soy reaction.  We're keeping an eye on it.  He's also dealing with some diarrhea and a sore, red bottom.  He's complaining that his belly hurts, but we did just have a button change last night, so hopefully he's just a little bit sore from that.  Pretty please don't be allergic to Elecare, Aidan.  I don't have the best feeling about this, but we'll keep going.

In super exciting news, Aidan has gained 4 ounces this week!  More than we can say for his progress in the past 3 weeks on Neocate Jr! 

3/7 - Day 6 - Aidan is congested and wheezing a little bit - I guess maybe he did come down with a bit of a cold?  His cheeks are still red and crusty from time to time, and he's still having diarrhea and a diaper rash.  He's feeling very clingy and overly emotional - He woke up several times overnight crying, asking to be held, and holding his tummy.  I really hate to keep doing this, but what other choice is there?

3/8 - Day 7 - Aidan is coughing a lot while he takes his feeds.  His tummy is still bothering him, and his diaper rash is getting worse.  He's very tired and cranky.  :(


So it's been a week now.  Aidan is worlds better off now that he's off the Neocate Jr.  I'm really thankful for that.  But I feel like Elecare isn't exactly the right solution either.  I don't know what else to do, though.  I'm NOT going back to Neocate Jr.  I'm afraid to try Neocate Infant, because I really don't know what the situation is over at Nutricia and honestly, my faith in them is pretty low.  I'm afraid to try flavored Elecare if we're already concerned that he may be reacting to the unflavored.  I'm really hesitant to try a steroid - we've been down that road and it was awful.  So what's left?  He's keeping the formula down and seems to be gaining some weight - so do we just go with this because it's the best we can do?  Can that really be the answer for my baby?  When he wakes up at night, holding his tummy and crying, can I really look into his little face and tell him that this is as good as it gets?

Neo-Gate 2013 - Steps forward (?)

You can find the beginning of the Neocate saga here -


With Neocate Jr. making Aidan sicker and sicker, we have known for some time that we have to change something.  And actually, we've been trying to make meaningful changes - it's just difficult to know what constitutes "meaningful" when we're trying to change a process that's previously worked nearly perfectly for over a year. And the frustrating thing is that you really need to wait a week or so between making any changes before making another one - just so that you give it time to actually help, and so that you know which change is helping (or making things worse!).  I feel like everything about this disease boils down to waiting...

First, we reduced the amount of Neocate we were feeding Aidan.  At his last appointment in January, shortly after the vomiting started, his doctor requested that we increase his daily target to 48 ounces.  FYI - 48 is a lot of ounces for a 25 pound toddler.  This had us feeding a whopping 24 ounces at night along with four 6oz feeds during the day.  Too Much!  Our new target became 42 ounces - which may not sound hugely different to you, but to me it sounded excitingly like six fewer ounces to mop up.

Then we waited.  And it didn't help.

Next, we changed the delivery.  We had been doing overnight feeds at 71ml/h and daytime feeds very quickly via gravity (by way of syringe - so - very quickly).  Now, we are pumping daytime feeds over 30 (breakfast and dinner) or 60 (lunch) minutes.  Huge difference.

Except not really, because nothing improved.  In fact, overnight vomiting actually seemed to get worse.

After three days of the new feed plan, I'd had enough.  I called the nurse.  I called the doctor.  I called the nutritionist.  I even called our Occupational Therapist.  I was desperate - someone needed to help us.  Not for the first time (and probably not for the last), our nutritionist came to the rescue.  "Start the Elecare tonight.  You do not have to transition him.", she said.  Music to my ears.

So 3/1 would be our first night off Neocate Jr. and on Elecare Jr.  I was really nervous, because Elecare hadn't traditionally been a great solution for us - but desperate times call for desperate measures.

Feeding Tube Awareness Week - Story Time!

Aidan and Megan did something really, really special for Feeding Tube Awareness Week!  They visited a local storytime and spread awareness the good old fashioned way!

Here's Meg, to tell you more...  

Sometimes what can be terrible about caring for a toddler is having to step outside of your comfort zone and realize, “This isn’t about me. This is about <insert child's name here>.” We are responsible for our children’s daily experiences, social interactions, and exposing them to the world – and the world to them. That is what Feeding Tube Awareness Week was all about; Aidan and exposing the world to him, to that which sets him apart from other kids, to his tube. 

Story time at the Perkiomen Valley Public Library quickly became a regular item on our “Things We Like To Do” list. Especially following the really disappointing start we had finding inviting places to go. The week we met Hillary, the volunteer who runs story time, Aidan joined the group to draw, read, do his craft, and eat a snack. Aidan ate the way he does – a little from his cup but mostly from his tube. Mothers and children looked, while trying not to stare, and asked the question, while trying not to offend. (Note: We don’t mind, really. We want you to ask. We want to tell you. We want you to understand this little boy is mostly just like your little boy but a tiny bit different.) After snack an amazing thing happened. Aidan was treated normally. The boys and girls ran and chased and kicked balls with Aidan just like they did with the others - but more importantly, mothers didn’t stop them. (We constantly find parents warning their children away from Aidan. Trust me, we get it, no one wants to be the parent whose kid breaks the “sick” kid, but that is exactly why we want you to ask.) Caroline and I looked at each other and smiled. We liked this place and these people, and we knew we wanted to be a part of it. 

As we were leaving that first day, we took some time to talk more to Hillary, who did ask questions and was a little shocked we were so excited at the normalcy. I mentioned to Hillary that Feeding Tube Awareness Week was coming up and asked if she minded if we could have the floor that day to educate these curious toddlers and parents about our life and Aidan’s feeding tube. She emphatically said yes. 

Feeding Tube Awareness Week was February 10-16 and in it’s 3^rd year. This was our first year to participate.

After saying our hellos and getting out our crayons, Ms. Hillary handed out drawing sheets that said

“G is for GROW. Draw a picture of things that grow”

Lexie drew a picture of flowers while Brody drew a picture of trees.  Aidan drew a picture of... Well, Aidan drew a picture.

Then it was circle time for our story.  Ms. Hillary did an amazing job talking to the kids in a way they could understand what can be a complicated topic - even (especially?) for adults. She talked about how little boys and girls grow big and strong by eating nutrients they can get from eating healthy foods like apples, milk, and eggs…and some of our favorite foods that aren’t so healthy, too (like pizza!!). She asked how those nutrients get into our bodies:

“We eat with our MOUTH!” answered Drew.

“Yes, we eat with our mouths,” replied Ms. Hillary, “but Aidan has a special way to get nutrients into his body. Sometimes, when Aidan eats food it can make him sick so he has a special tube in his belly that helps him get his nutrients so he can grow big and strong, too. Today, I am going to read a story about his special tube.” 

As Ms. Hillary read our story , Aidan and I passed around our Tubie Friend, Puppy Pup, and Medical Me, Baby Aidan, so everyone could see what his tubey looks like. While looking at the tubey in Baby Aidan’s tummy, Drew asked his mom, “How does it get into his mouth?” She answered that it doesn’t and that it goes straight into his belly. “How,” he asked? Then I took out a bolus feeding kit and showed him how we attach it to the tubey and where we put Aidan’s special milk. Then Drew took a turn giving Baby Aidan another bolus feed. (I was grinning ear-to-ear. Aidan was eying Lexie, who liked Puppy-pup a little too much.)

Instead of a craft we played a very special game: Pin the Tubey on the Tubie. Our Tubie, Mr. Penguin, needed help finding the right spot for his tubey so he can get his nutrients, too!!

Charlotte was our big winner!!

After our game it was snack time. Aidan sat and drank Neocate from his cup while the other kids drink their apple juice from theirs. Moms pointed out that Aidan is drinking a special milk and that is why he doesn’t eat goldfish and raisins like them but that’s how he grows. (Under normal circumstances, I would have bolus fed him but we are having difficulties with Aidan tolerating his feeds lately - which is the subject of an entirely different blog post.)

Then the kids, having seen what they needed to see and learned what we wanted them to learn, did what kids do…they ran off to play. Just. Like. Normal. 

The other moms and caregivers that came to story time were really wonderful. They asked questions about Aidan, his disorder, how he was, what we’ve been through, how he was doing,…you know, the usual stuff. Then, happily, the conversation stopped being specific to Aidan and his disorder (we are happy to talk about it but we also want people to see he’s more than his disorder and his tubey, he’s a totally awesome 2-year old boy). We started talking about keeping our children safe, people we know with some food limitations and having a new perspective on that. (I let out a deep sigh of relief.)

Kids are easy, they aren’t prone to getting stuck over things. Kids rarely question why there isn’t cake at the birthday party. It’s the parents we often worry about judging us. What are they thinking? How angry will they be at the inconvenience? Will they be mad if we have a food-free party?

I thanked everyone, numerous times, for letting us come in and take over for the day and share this with them. They responded with, “No, thank you, for coming in and teaching us.”

…then I breathed another sigh of relief.

Team Shields Feeding Tube Awareness Week 2013: WIN!

Special Thanks to Mini Buddy for giving us Puppy Pup!  And to Medical Me for Baby Aidan!  And of course to My Tubey for the wonderful books!