Tubes, recapped

Sorry for the delay in posting the full recap. I've been having computer difficulties. Anyway....


Tube day went very well, minus one very unpleasant hour.

Robbie wasn't allowed to have food or drink after midnight, which was fine. He woke up tired, but pleasant and we headed off to the hospital.

In the surgical reception area, we waited to be called.

Robbie wondered why were back in this place AGAIN.


Once we were taken to the back, Robbie was given some scrubs to wear instead of a gown. They were handy, but also about a foot too long. He apparently approved, since we got some random applause here.



Then we just settled in to wait. Surgery was scheduled for 10:10.




Unfortunately 10:10 came and went. In the mean time, Robbie managed to confound a lovely and attentive, but confused nurse. There was a bit of a run of "Who's on first?" conversation in which I explained approximately 457 times that yes, Robbie CAN eat, but he doesn't. She kept insisting that he couldn't swallow. I explained that he can and does swallow. He just won't eat enough to survive on and won't drink at all.

We went around and around:

Nurse: so he chokes?

Trish: No, he can swallow fine.

Nurse: So why does have have a G-tube?

Trish: Because he won't. If you give him a little bit of liquid from a syringe or something, he has no trouble. But he'll only take maybe a third of an ounce before he gets angry and starts spitting it out.

Nurse: So we should give him his meds in his tube?

Trish: We can, yes. Or orally. Whatever is simplest.

Nurse: But he can't drink.

Trish: No, he can drink. We give him meds orally all the time. He does fine.

Nurse: And he doesn't choke?

Trish: No. He's physically capable of swallowing.

Nurse: So why does he have a tube?

Trish: Because he won't take in enough nutrition to live on.

Nurse: So he has trouble with liquids?

Trish: No, he can swallow. He has all the skills required to eat and drink, he just won't. He'll eat small amounts of baby food, but that's all. Just go ahead and put everything in the tube. (Hoping to stop re-explaining.)

Nurse: What about something to drink after the surgery?

Trish: Well, we can offer him something, but I doubt he'll drink it. We will probably have to tube it.

Nurse: So he won't choke?

Trish: [looks around for candid camera]

Robbie practiced his cruising skills while we waited.

He was mesmerized by the mounted television.

Cartoons... on.. the... ceiling...

As it approached 11 am, the surgical team started preparing, so we had a little play time before the main event.



And a little snuggle time, too.




11:00, they're here to get him. I wish a little nervous, but Robbie thought it was great fun.




He was out of my arms for maybe 10 minutes. That's stretching it. They came to tell us he was done, everything had gone fine. The doctor said he has a LOT of very thick mucus in his ears. His left ear drum was also bowed in a bit indicating it had been a chronic condition. We were sad to hear that, but it wasn't unexpected. I don't think he'd been more than 10 days without an ear infection since August.

I went to the recovery room to see him and he was upset. They warned us that he would be very angry. They explained that they are out for such a short period of time that they have so much gas in their bodies they have a hard time coming out of it and they get very angry. They were not exaggerating.

Once they confirmed that his oxygen saturation was good, we went back to our room and were told that the next hour was "about keeping him safe." He was so angry that he was flailing, head-butting, kicking and pretty hysterical. I held him as long as I could, but eventually my arms just gave out. It was like wrestling a crocodile. David and I then took turns trying to soothe & contain him.

After about 45 minutes of wrestling, he was starting to lose a little steam, but was still very upset. Consider yourself warned if you watch the video. He's NOT happy. He's okay, not in any pain, but just really out of it.

Shortly after the video was taken, I decided we'd try to walk the halls. He'd spent part of the morning trying to crawl up and down the hall (and getting frustrated with me when I objected to his crawling on a heavily trafficked hallway.) Once we got to the hallway, he calmed down significantly. Distraction was our savior.

As we walked down towards the nurse's station, our nurse asked how he'd handled his liquids. I was a bit confused as no one had given him any fluids. She seemed confused (again) and asked if I wanted some juice or something. I said yes. She asked how I wanted it. In fear of repeating the earlier circular conversation, I asked for it in a sippy cup, figured I could at least try to moisten his lips a bit, then could pour into the tube if necessary.

She gave us 4 oz of apple juice and diluted it with a bit of water.

Back in the room, I passed Robbie to David. Robbie immediately started complaining again. I then dribbled a little bit of the juice into his mouth and he immediately stopped and licked his lips.

And this was the big surprise of the day. He seemed to like it. Keep in mind that Robbie hasn't willingly drank anything in nearly a year. We've been able to drip maybe a half oz of water or milk or juice into his mouth and get him to swallow it fairly regularly, but he is just tolerating our efforts, not participating in them. But this time, he seemed interested. I offered another dribble. He swallowed and when I pulled the sippy cup away, he reached for it. David and I both froze. Of course, I immediately offered it back. And he kept wanting more dribbles and more dribbles.

About 10 minutes later, he'd drank about an ounce and a half. I was overjoyed! But he wasn't done.

He just kept going. Eventually he actually started sucking on the sippy cup. I could hear gulping, see bubbles in the cup. My eyes welled up with tears. I didn't know he still knew how. The nurse came in and I exclaimed "He's drinking!" and she just stood and watched. She commented that he was doing well and I had the pleasure of replying "yes, like I said, he CAN drink. He just usually won't. I guess it just takes 12 hours of no food or drink, a bunch of gas and oxygen and screaming for an hour straight to get him to do it."

Thankfully, after I picked my jaw up off the floor, I realized I should record this for posterity, so I took a video and the above photo. (Pardon the other child screaming in the background. All of the kids were furious as they came out of surgery.)



In the end, he drank the whole cup. About 6 ounces over 20 minutes or so. If we tried to give him 6 ounces of liquid in his tube that quickly, he'd puke. But I guess since his body knew he was drinking it himself, it accepted it? I don't know, but it was amazing. When there was about 10cc left in the cup, he declared "done!" and pushed the cup away and wouldn't take it again.

At that point, he was happy as a clam and ready to go. We got him dressed and did our checkout stuff and off we went.



Waiting for Daddy to pick us up at the door.




All in all, it was a good day. He fell asleep about 5 minutes into the car ride home and even after we got home, he went right back to sleep and took a long nap. I gave him some Motrin when he woke up just in case. But honestly he didn't mess with his ears or seem uncomfortable at all. He wasn't a huge fan of the ear drops, but he did okay.

Unfortunately we haven't had any repeated success in getting him to drink again. But seeing him drink that way was honestly amazing and did a lot to bolster our spirits and confidence that he will get there some day.

As of right now, he's had the tubes for a week and so far so good. No ear pulling, no night waking, no antibiotics. He has a follow up appointment with the ENT in a month and at that time they will do a hearing test. Hopefully this will be the end of the ear nightmare.

--Trish