Category Archives: Food & Feeding

Owen did pretty well [trying to] sleep with the lights and vital checks and trips to pee. I wasn’t super comfortable but it wasn’t awful. I turned my lights out at 10:30 and was up at 11:30, 12:30, 3:30, and 5:30—finally getting up for good about 6.

And even though he had strong doses of meds all night…he still didn’t poop (he did pee a few times). He’s a tough bugger, apparently. Or, rather, his poop is the tough bugger. 🙂

He spit up at about 6:15 but it was just phlegm. I had to call the nurse so we could change the bed and get him into a gown. His B also got a little wet so I just threw it in the Family Lounge dryer (I was going to pack an extra B and forgot). Bad mom.

An upset stomach (nausea) can be a side effect of too many meds, so they turned them down (they had been up to the max level). Then he vomited at 7:15 and the tube came out. Ugh. Which means we likely have to go through that torture again. We’re waiting to hear the official next step—though I’m sure it means the tube goes back in because he still needs the meds to poop. 🙁

At least I don’t feel bad for being unsuccessful with the Miralax regimen at home—if they can’t get things going with serious drugs over 12 hours…what hope did I have?

Yep. Another tube. And an enema. Joy.

But before that happens, here’s a happy Owen, cleaned up and in his second gown of the day.

“Mom, I’m gonna lay like this. This is great!”

Of course he’s happy now—he doesn’t know what’s coming. 🙁

Nurse: [Grabbing Owen’s toe.] I think I’m gonna eat this.
Owen: No! I need it! [Taps his toe on the bed.]
Nurse: So I can’t eat it?
Owen: No, toes are for walking, not eating.

It was four hours before he got the second tube. FOUR HOURS. This is walking with the nurse to the treatment room.

This is getting the drugs via the port.

This is Owen on giggle drugs (Versed).

This is putting the tube in. It was a different tube and was done in under 30 seconds this time. Phew.

After he calmed down, they have to blow a puff of air through the tube to see if they can hear it in his belly. Owen wanted to listen, so they let him.

The same as yesterday, we had to wait for an X-ray to confirm tube placement. The air puff can be enough confirmation at some places but here they want to make absolutely sure.

The same as yesterday, he was a hot mess as the drugs wore off. Fine one moment, crying the next.

He wanted to see what he looked like:

It took FOREVER for the X-ray confirmation. So long, in fact—well, at least to me—that I completely forgot about it and panicked and called the nurse (and when I couldn’t get him, snagged the pediatric liaison in the hallway) saying he wasn’t connected to his medicine. I blame lack of sleep.

Tom Skyped in and Owen burst into tears and did NOT want to talk to him. After we hung up, Owen was sad he didn’t talk to him. But didn’t want to talk to him if he called back. Stinker.

Owen finally fell asleep about 1:30 so I ran down to grab a quick bite (and they had a volunteer sit with him in case he woke up while I was gone). Then I took a half hour nap, too.

He can’t easily get to his normal left-hand thumb, so he adjusted. 🙂

They RE-started his meds about 2:30 and planned on doing the enema once he woke up.

As a side note, there have been a few machine snafus—nothing life or death—just annoying.

Of course we get the wonky machine that beeps when you unplug it (it doesn’t hold its charge, apparently) so it starts beeping immediately. That’s nice…especially in the middle of the night. Or when Owen is napping and some other random steady beeps happen. I just push whatever button it’s requesting to shut it up—then go find the nurse.

And I have yet to ask about the nurse call button. No one ever shows up when I press it. Luckily there’s not been a real emergency and I can find someone at the nurses station. (I’m not talking doesn’t show up immediately. I’m talking doesn’t show up after three calls in 15 minutes.)

So…turns out I was using the call buttons on the bed when I was suppose to be using the one on the remote. Yeah, that wasn’t told to me, even when I was talking to the first nurse the first night (about telling Owen not to push that one for fun). I asked some random nurse who was standing outside our room and she cleared it up for me. I used the right button and someone answered in a minute.

Which, oh yeah, Owen pooped! Just a mere 21 hours after starting the meds and 26 hours after being admitted. Hallelujah.

But of course he didn’t go on his own. I had to practically beg him to “just try.” Which he finally did…and then let loose. Yay! But he wasn’t happy—he was crying and drooling. 🙁 I assured him it was okay and that’s what we wanted to happen!! I’m hoping that means we won’t need to do the enema.

He had to pee about a half hour later so I said “Let’s try to poop since we’re already here.” More whining and crying. I almost had to force him on the toilet. Once there? More poop. I just can’t understand how he can hold that all in without feeling uncomfortable or like he’s got to go!

When the nurse finally made it in (he had been admitting a new patient) he was thrilled at Owen’s pooping and agreed we’d hold off on the enema. He said he’d have Owen try to poop while I went to grab dinner.

On the way down, I actually noticed the mat in the elevator. I’ve been in it at least four times since we got here.

When I got back from dinner, I found out from our awesome male nurse that Owen call(s)(ed) him a doctor because he’s male. This is odd because Owen’s pediatrician is a woman (but his GI specialist is a man…) so it looks like we need to have a little talk. Rodney got a kick out of it regardless. 🙂

As we were just sitting there:
Owen: I don’t like needles.
Me: Well you’re done with shots.
Owen: Phhhheeeewwww!! Complete with hand wiping across forehead move.
Me: [Laughing]

So I made Owen poop four more times and the last three were (for all purposes) clear so we’re just waiting on the final word from the doc to get the last X-ray! And he’s already off the meds!

If it was any earlier we’d get to go home tonight…but since it’s a bit of a drive we’ll stay and try to sleep and check out first thing in the morning. (Had he not barfed up the first tube, we’d be about SEVEN hours earlier in this process and surely headed home tonight.)

At 9:30 he was given a clean bill of health—and the okay to eat! Of course, I hadn’t brought ANY snacks (I assumed we’d just eat after he was discharged) but the vending machine had his favorite crackers!! So he was a happy boy!

And the tube should be coming out shortly! (I just wish that part wasn’t taking so long because it’s already WAY past his bedtime (it’s currently 9:45). I know this situation is a bit unusual, but still.)

The doc said he’d cancel the nightly vitals checks so hopefully we can both get some decent sleep…and when the nurse came to take the tube out a little after 10, she said fluids were done, too! YAY! So now at least if he has to pee, he can do it alone (though of course I’ll still hear him). He was excited that he could now potty alone. He still has the port in just in case.

But oh. Taking the tube out. He screeched and cried so much while she was just taking the tape off I was flabbergasted. I mean, I’m sure it didn’t feel great, but I thought his reaction was way overboard…which I blamed on him being overtired. The actual tube removal was nothing in comparison and he about ripped it out himself.

So…an eventful day. Hell, two days. Overall I’d have to say it went much better than I thought. And I really hope we never have to do it again.