Friday, March 21, 2014

My kids and hospitals

Aryn had her first over night hospital stay when she was when she was 19 months, with a bad bout of croup and a super fun febrile seizure.

Lucas had his first over night hospital stay Monday night at the Alberta Children's Hospital. Yay!

He stood here in the window and waved
at all the nurses. He was quite popular.

As you all know, Lucas was born with Situs Inversus; his internal abdomen organs are all flipped around (mirrored). When he was born, he was checked out with an ultrasound and found to be perfectly healthy, despite his Inversus. The ECG he got when I was pregnant showed his heart to be perfectly normal (which is extremely rare for the syndrome he has - most people born with their hearts on the correct side and their abdomen flipped tend to have a heart defect).

So when Lucas started vomiting after every nursing feed for the past month, and spent Friday night screaming for 2.5 hours and Sunday afternoon for 1.5 hours, I woke up Monday morning knowing the only option was to get him into the doctor. Then I fed him Monday morning, and he vomited all over me and I had had enough.

Finally asleep.

To explain what was happening, basically I nurse Lucas holding him as one would expect: he lays on my arms, he eats. Regardless of how long he nurses, all of a sudden his stomach will "blip" (like a hiccup) and BAM - projectile vomit. It has been a very stressful month.

Why didn't I take him in earlier? He seemed happy. He was pooping, peeing, smiling, learning to stand, crawling around like a maniac.... despite his eating antics, he was a happy, healthy baby.

Why did I take him in when I did? Because of the screaming.

Getting his IV put in. He was a little dehydrated.

When he as born, the senior resident paediatrician in the NICU told us that if Lucas ever started to scream uncontrollably and begin vomiting, his stomach could be trying to flip back around. When he told us that, both Ryan and I stared wide-eyed and asked, "Can that happen?"

Doctor's response: "We don't know. Maybe?"

That's the fact of the matter: no one knows. Situs Inversus is rare. Situs Inversus Totalis (heart and abdomen flipped around) are rare. Situs Inversus with levocardia (or Situs Inversus Incompletus), which Lucas has, heart on correct side and abdomen flipped around, are even more rare. No one really knows what to expect.

So when Lucas was screaming uncontrollably, vomiting during and after every single feed, the only logical explanation in my mind was: his stomach is flipping around. Obviously. There's no other options.

So we went to the Children's, and I began explaining his symptoms: projectile vomiting, fairly tired (napping for longer, more often), and uncontrollable screaming. 

Oh, and he has Situs Inversus.

Well, let me tell you: throw that in the list and you are welcome with a red carpet. Not only was he seen as a medical marvel, they took me extremely seriously. We had an Upper GI done, a few X-rays, an EKG, and some blood tests. 

Lucas getting his EKG. The nurse was a total cow. She got mad at Ryan taking this photo because she didn't want her photo taken. Yes... cuz we wanted YOU in the photo... *sigh*

I'm also not sure why I had that face... probably because it was 9pm and I hadn't slept yet, or eaten, and I was exhausted and delirious haha!

(What's an Upper GI? Basically, first they took an x-ray. Then they stuck a tube down Lucas' nose so it goes into his stomach, and they fill him with barium. Then they take a GI machine and watch the barium fill his stomach and go into his intestines, to see if there's a blockage. Lucas literally screamed the entire time, and it was a 20 minute test. He was so mad at the tube in his nose! Then they waited 20 minutes and took another x-ray to get a big picture of his insides to make sure it's all working smoothly.)

Thank God, his stomach and intestines were fine. There was no blockage (which is what we were expecting to be the issue; we even had the surgical team on standby to operate!) and his stomach wasn't flipping around. Awesome. His heart is also perfect, much to all of the doctor's surprise. "We're extremely surprised his heart is fine, considering his Situs Inversus! It's so rare!"

We were then admitted. Dr. Les, the ER pediatrician, wouldn't let us leave without finding out what was happening. For the entire rest of the day, that night, and the following day, we were asked question after question, and test after test. 

In the end... we found nothing too serious. His hemoglobin is low (93 when it should be 110) so he's on an iron supplement. He has potential reflux, so he's on a Zantac-like product that tastes disgusting and makes him shiver. 

He took these Cheerios and threw them ALL OVER the place.

Zantac or not, he's still vomiting. This afternoon he nursed, and I spent 20 minutes keeping him awake to keep him from throwing up. He gags, chews, burps, etc.... then the next second, he's asleep and fine. 

It's a complete mystery what is going on with this guy! Could it be an allergy? Doubtful, as he throws up WHILE eating, instead of after he's digested a bit. And, after he's digested the rest of what he's eaten, he's fine. It's not like he's throwing up all of what he's eating; just a lot of it. Could it be reflux? Perhaps, but he doesn't follow the symptoms very well at all. 

So we wait. Trial and error, writing everything down (which I am AWFUL at, since I just remembered I was supposed to do that!), and learning new ways to nurse are how we're treating this. And.... I hate to admit it... considering ending our nursing relationship. The thought pains me, but so does watching him vomit 5 times a day! 

Any suggestions, ideas, and prayers are welcome!



  1. I am so sorry you guys are going through this. I don't have any answers or suggestions for you but just know I am thinking of you guys. I hope everything works out for the little guy! Take care and say hello to Ryan for me!

  2. Wow! You totally handle it like a champ! I would be a puddle on the floor, the thought of taking Asher anywhere where he needs to be "contained" right now is frightening - so good for you :)
    I have no suggestions (sorry) but I would like to day that "Situs Inversus" totally sounds like a Gladiator name! For real, if Baby Lucas was mine I would be personalizing that on T-shirts and EVERYTHING :) Essentially, he is a Gladiator - I'm not even being sarcastic (for once). AND one ever dies from not being breastfed, if that's what you guys need to do, then do it - and anyone who judges you? Well just send good ole' "Situs Inversus" after them. Hope you guys come up with a solution that works for you :)

    1. OMG who can I hire to make us a tshirt?!?! Seriously!! That is friggen awesome!!! I'm off to research!!!

  3. I would caution against weaning because he'll still need formula to make up the majority of his diet and formula is much harder to digest. I don't think weaning is the answer.... WHAT is the answer, though? I don't know. :( I'm sorry he's been so sick. The gagging, chewing, and burping, etc sounds a lot like acid reflux to me, at least that's what I'd often do when my reflux was bad. I hope something clicks soon and he can start feeling better!

  4. Since you don't like writing, get a small tape recorder and then talk through what you are doing. that way the doctors can even listen to the sounds in your voice and perhaps some is your stress coming through. Just a thought.


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