Posts Tagged ‘pyloric stenosis’

So some of you might know by now about the last week in February and my son Mason having to be hospitalized for “failure to thrive.” What started out back in the early part of February (which I will now call FuckMebruary) as a repeatedly hush-hushed case of “babies will puke”, went all out frightening towards the end of the month.

On February 6th we took Mason into our primary care office to see the doctor on duty, since our doctor doesn’t have Saturday hours. We explained that every other bottle ends in projectile-like regurgitating of the stomach contents. No crying, no hurling sounds, just a quietly approaching FOUNTAIN OF FOOD.

Because our 2 year old son had pyloric stenosis, this doctor was under the impression that Mason was a prime candidate for that lovely piece of shit, so he ordered an ultrasound for that day. We wheeled over to the hospital a few blocks away and sat amidst the people hacking, holding limp limbs or actually decaying in front of us who were waiting for an ultrasound or x-ray.

This was the first ultrasound, and it was negative for pyloric stenosis.

The doctor we saw at our primary care facility had no suggestions for keeping food down other than to slow down the intake of food. Mason’s sister Leah has had no problems eating, and was at this point, taking 3oz every 3 hours like clockwork. So we decided to try 2.5oz every 3 hours and see how that went.

The puking intensified. Not only was this shit flying out during and immediately after a bottle feed, this milky stream was shooting out sometimes 1 to 2 hours after a feed. We aren’t even sure where the hell this shit was coming from because he seemed to be getting rid of everything immediately following a feeding.

Calling the doctor, again gave us nothing. So this was on us apparently, we needed to start trying things or pretty soon this kid was going to start losing weight.

Here is a short list of what we tried to help Mason keep food down.

• *Shortening the time in between burps to every half ounce vs. every ounce, then when that didn’t work, down to every quarter ounce, then when that didn’t work, down to every 15 sucks on the nipple.
• *Cutting the breast milk with formula.
• *Adding a half ounce more water to the formula.
• *Adding a half ounce less water to the formula.
• *Keeping him in an elevated position, about 45 degrees or so, at all times.
• *Feeding him one fucking ounce every fucking hour.
• *Feeding him a fucking half ounce every fucking half hour.
• *Feeding him on a speeding train, upside down.
• *Squirting the contents up his ass like an enema.
• *Mixing the formula bottle, then squirting out a spoonful, putting a lighter under that, cooking it like crack and mainlining it.

Nothing was working, and after another visit to our primary care doctor who actually had an open time slot, we were still getting nowhere, Mason was still pukey mcpukesalot and we weren’t getting anywhere with our doctor besides “babies spit up, let’s wait a week.”

Fuck that. If my kid was born 8lbs and he had currently grown to 15lbs I can see waiting to see if this was a bug or something of that nature, but we’re talking a premature baby, a wimpy white male, as they say. Waiting a week, or even two days, is unacceptable in our opinion and I don’t give a fuck who I offend, someone better fucking listen to me or I’m going to get fucking loud and cussy. And I’m a fucking asshole when I’m loud and cussy.

After Jules talked me down from threatening violence and using the gang signs I grew up on in Aurora, Illinois, I decided to let her do the talking with her eyes, her managerial skill of suggestion and some tears.

So at our third visit to the primary care doctor we were drawn a diagram of the stomach and the pyloris for the fifth time since becoming parents.

It was pretty.

I fucking framed it.

Along with that our doctor, with both palms facing towards us as he spoke, wrote us a prescription for Zantac and drew another pretty picture of what GERD is and how that might be a possibility. Another ultrasound so close to the first wouldn’t prove anything, so here is a drug, a hand drawn picture and the door, use them. Goodbye.

Julie, tears in her eyes said “The first doctor we saw at THIS office told us it sounded like pyloric stenosis, which we know a drug won’t help. If an ultrasound is the only way to see it, who cares what it costs or if it’s negative again, won’t we at least know?”

Then our doctor did something I see doctors do all the time, he did what the patient or the parents wanted to avoid a confrontation, but not a confrontation with us. He was avoiding a confrontation with other patients waiting for him. If he spent another 5 minutes in that room with us he would run the risk of putting his entire day’s worth of patient appointments at risk. In what I referred to as ‘pacifying the patient’ he relented to another ultrasound order and left the room.

Now we can get an ultrasound anytime we want by taking our son to the ER, but with a doctor’s orders you’re lowering the amount billed to your insurance by about five fold, and as weird as it sounds, walking in with a note from the doctor bears a shitload more influence than just a pair of crazy parents.

So we had our order for the second ultrasound and during the procedure Mason evacuated his stomach yet again, narrowly missing the pretty ultrasound wand. Results? Negative for pyloris stenosis.

But hey, we’ll wait a week huh?

No, from that Thursday appointment we went to Walgreens, got the drugs, gave him his first dose and treated him like a porcelain doll. For whatever reason, the first dose of Zantac seemed to allow Mason to keep down an entire ounce for an hour or so. We thought we were on the mend and that weight gain was right around the corner.

An hour to two hours later he was right back to his old tricks. I did some looking online and there is a good chance the peppermint flavor of the Zantac actually calmed his stomach more than the actual drug, but who am I to make assumptions? I should be waiting a week!

We knew our doctor thought we were crazy but who gives a fuck what some doctor thinks of you when your kid is visibly shrinking?

We tried to be patient through a pukey Friday and a spitty Saturday, but come Sunday we both knew we had to act fast. Mason’s eyes were sinking into his skull, his eyelids were a veiny red and he wasn’t waking up to eat.

We decided to head over to Urgent Care (Rush Copley in Yorkville, IL) and the doctor we saw within 15 minutes of walking in, who happened to be a mother of twins herself immediately said: “You should go to the emergency room. I’ll call ahead so they’ll be expecting you. Good luck.”

In a kind of relieved state, we both looked at each other, then to her and asked “Really?” None of the other doctors we saw gave us more than 5 seconds of explaining anything before telling us that either babies spit up or to wait a week. Now we’re being told, almost immediately, to go to a hospital emergency room?

“There is nothing I can do here besides tell you, from a mother of twins to parents of twins, if his sister is steadily gaining weight and he looks like this? Yes, as a mother and a doctor I am recommending you go get him a complete work up: blood, urine, whatever they need to do to find out why he’s not keeping food down. Go. Good luck.”

So we left.

Fast forwarding through the 6 longest days of our lives, we experienced the following in our search to find out what was kinking Mason’s yumyum gobbler.

• Two x-rays of Mason’s stomach
• Urine draw
• Blood draw
• 1 DO and 1 pediatric nurse practitioner visit each
• 1 conversation saying if this isn’t GERD or pyloric, to maybe consider seeing a geneticist (WTF?)
• 1 conversation saying we’re being transferred to Central Dupage hospital
• 1 ambulance trip in a lights on/siren on ambulance for Julie and Mason, with him in an isolet that looked like an oven on wheels
• And then the 6 days of hospital food, uncertainty and dread begin
• 1 new ultrasound for pyloric stenosis, again negative, bringing the total up to 3
• 1 upper GI
• 2 iv drugs: reglan & the zantac
• 3 doctors in the first 24 hours, each asking the same questions but with different accents
• 5 different nurses, all very cool but all giving us the head tilt to the right and the “awww” look every time we ask about seeing a doctor or when something is going to happen
• When the drugs didn’t work, they tried hypo-allergenic formula
• When the hypo-allergenic formula didn’t work, they tried thickening with rice
• When the rice thickened, hypo-allergenic formula didn’t work, they tried more drugs
• When more drugs didn’t work on top of the rice thickened, hypo-allergenic formula they ordered yet another fucking ultrasound to check for pyloric stenosis, yet this time they assured me it was using a ninja tech and a ninja pediatric radiologist.
• “Ninja Tech” turned out to be just one with a thicker accent. No radiologist showed up this time.
• The ninja-ultrasound was, indeed, fucking negative, that’s fucking FOUR ULTRASOUNDS
• Since nothing seems to be making sense to the 5 doctors entering and leaving our room, a Speech and Swallow therapist enters the situation asking all of the same questions each doctor asks as they introduce themselves to Mason’s chart
• Speech and Swallow lady has an in with the Pediatric GI specialist from Children’s Memorial in Chicago, she puts in a call to him. Meanwhile she teaches Julie how to feed Mason while being completely upright
• Peds GI specialist actually “wrote the book on Pediatric GERD” so our hope is lifted for the 8th time
• Peds GI specialist comes in and scratches out every instruction we’ve gotten from any doctor or nurse since this whole debacle began
• Peds GI specialist earns Ninja title by doing the following immediately:

1. Takes Mason off all medications
2. Gives new formula mixing instructions for our REGULAR formula, increasing his caloric intake to get him gaining weight
3. Recommends the use of Simply Thick, a thickening agent for us to use in his bottles
4. Encourages the use of a Tucker Sling
5. Says to keep the boy off of his back and preferably on his right side or stomach as much as possible
6. Apologizes for every other doctor we’ve seen not paying attention to addressing the weight gain first and the cause second

What was badass about this last doctor was the fact that he was extremely matter of fact. What he was telling us wasn’t conversation, it was what it was. There was no discussion. What he said was da troof.

Flat out “This is GERD. As severe a case as I’ve ever seen, but drugs won’t do anything for your son. Keep him off of his back, thicker, higher calorie formula, keep him upright for 45 minutes after he’s done eating. He’s what we call a ‘Happy Spitter’ in that he isn’t in pain or crying from this constant vomiting, so we just have to do a better job of helping his body hold the food down.”

Seriously?

You mean all of this scary shit, not knowing what’s going on, losing a half pound when only weighting 7 pounds…

Why couldn’t the first doctor we saw, our PRIMARY care physician, have taken the time to either a. discuss options for helping him keep food down or b. sent us to a fucking specialist to talk about this?

No, we had to deal with being ignored, being told to wait another week, and being run through the gamut of tests on a boy not even old enough to grab his own dick and common motherfucking sense was the answer?

I am completely thankful for this last doctor’s frankness, and we’ve slept a hell of a lot better since leaving the hospital, but I am completely miffed as to why it had to go this far.

But we learned something, or rather reinforced what we were pretty sure we already knew:

No one is going to look out for you unless you stand up and demand what you think is best for your kids.

A few weeks ago I had a difficult time not becoming emotional whenever anyone asked about our twins because of how worried I was about Mason, but we’ll get through the pukes. I just hope the American health care system gets the fucking enema it needs, cause it is completely full of shit.

We did have one more ultrasound before we were allowed to leave the hospital I must add. A nurse noticed dilated pupils and told a doctor, so Mason got a brain ultrasound through his soft spot to check for water or blood around the brain. Some think this could’ve been related to a potential side effect of the Reglan.

When it comes to eating that is…

Leah is a champ. Takes to the bottle immediately, complains when you interrupt her to burp, burps like a trucker, then finishes the bottle and conks out for a few hours. In between she drops some of the nastiest smelling bombs I have ever had the displeasure of feeling on my hands, stomach and lap. *Like mommy like daughter huh?*

Mason on the other hand, is a Nancy when it comes to food. You have to tease him with the nipple to get him to pay attention to it, and when he does you have to interrupt him a good dozen times to burp him throughout. Otherwise, dude is a puke machine. And not just tiny urps, I’m talking half and full bottles worth of puke, but not puke-puke, more like whatever we just put in just came out.

We are currently under the impression that he might be dealing with a pyloric stenosis situation, but the first ultrasound at the hospital showed, while the pyloris was a bit large, it wasn’t completely cutting off his food from digesting. Dylan, our oldest, had pyloric stenosis and Jules discovered it at day 21. He had surgery to correct it on day 22. Julie will never let me forget that she rules at mother’s intuition, and I’m okay with that. Just put the laundry away once in a while. BURN!

So why is it one twin is a monster, devouring anything in sight, be it nipple of rubber or flesh; while the other is more interested in daydreaming and breakdancing? (I’m not kidding about the breakdancing, will upload video soon, dude has an uprock many would envy)

What tha gwan?

*exhale*
Things are going as well as can be expected.
The twins were born at 5lbs 12oz (Leah) and 5lbs 9oz (Mason) and are now at 5lbs 14oz each. Which means, yes they are growing, but also that we have to wake them up every 3 hours to feed them, mainly because they were 5 weeks premature and tan as hell (jaundice).
Three hours seems so long when you’re at work or driving, but when you’re twinning, it’s like 15 minutes. There’s no time to get a good poop in, a lengthy shower, a trip to the local watering hole  or even a quick nap.
But as the days slowly pass I am sooooo fucking thankful that we didn’t have twins on our first shot. I remember the “looking uphill” and “I’M SURROUNDED” feeling that I had when Dylan was born in 2008.
It was miserable not knowing how to have confidence in yourself as a parent, I remember leaving the room once when D was just a few days old and calling a friend’s wife and basically crying to her that I couldn’t change my own son’s diaper or feed him or burp him, anything! I was spooked. Nothing seemed natural, every movement I had with the baby meant a neck was flailing, or an arm was caught in a onesie, or he wouldn’t eat or burp for me… I was horrible at everything and good at nothing besides loving the damn thing.
After a few weeks of that helpless feeling I started to settle into my role as Dad, but friends and family all told me the same thing “It’ll get better” and it did. But just as I was getting a better feel for handling my little dude we discovered he had pyloric stenosis at 21 days old.
That fucked me up for a good month and a half. I was paranoid, edgy, quick to emotion, sad and completely out of sorts. Granted, none of what happened to D was at all related to anything I did or could have done, but I felt like I had somehow let my kid down. And I remember I was okay at the ER, okay in the xray, okay in the ultrasound of D’s stomach, okay while following Julie and D in the ambulance to another hospital but when they brought him back in with the IV in his arm and the bag of saline was almost as big as he was I completely lost it. I wailed like a little bitch. I hadn’t let my guard down at all that day because I felt I had to stay strong for my wife and kid.
But when I think back on it, only after I allowed myself to be vulnerable did I become a better parent. I knew I didn’t know all there is to know and at one point I was ashamed of not having prepared well enough or something dumb like that, but as soon as I accepted my stupidity, I started gaining ninja skills as a Dad without trying, they just magically came. It wasn’t instinctual or taught, it was acquired through divine somethingorother.
Now, armed with the truth that “I don’t know shit” about being a father to twins and that that is okay, I’m ready to be a ninja at it.