Saturday, September 30, 2017

Four Surgeries Summer 2017


The last couple of months have been chaotic. But how is that different from any other day, week, or month we've had in the past 6 1/2 years?

Well, we had four surgeries this past summer.  Don't worry! None of them were life threatening. A few of them we anticipated.  Some we combined so he wouldn't have to be sedated four times. In total, he was put under three times in two months.

Ultimately, this is why I've been MIA for so long.  In addition to therapy three days per week (our normal schedule), we'd been doing doctors visits galore, verifying that Jacob was healthy enough to go under the knife. Then there was the juggling of appointments and getting all four doctors to communicate with one another (that did NOT go well), phone calls from the nurses, insurance, paperwork, pre-ops, post op visits, and recovery time.

Add in that I also had a procedure a week after Jake's last surgery, and my husband had been experiencing some physical issues during this time and discovered he will need a major surgery in December, and I can honestly say we're done with doctors for a while. Sigh. Except somewhere along the line, they forgot to do his annual blood work while he was put under, so I'll need to do that here shortly. And he needs an X-ray to check his spine for an issue that's common among kids with Down syndrome.  This, too, is something we've known about for years. We've tried a couple times to get the x-ray done, but he wiggled and fought too much. Our pediatrician doesn't want him doing any major sports until this has been verified though. And since Jake is nearly seven, I'd like to get him into sports. Lots of them.

But I digress...

We had four surgeries. One on his teeth. One on his ears (he had a perforated ear-drum on one ear, and the T-tube on the other had fallen out). One for a circumcision (he still wasn't potty trained and his stream was only a trickle). And one on his eye (to help with the crossing).

Teeth:  This was an annual thing.  Jake is only just beginning to let us put a toothbrush in his mouth, and usually for only a few seconds.  Which means that, at age 6 1/2, his teeth haven't been brushed. I know. Ick!  There are so many things wrong with this scenario. But, ya know what? We've been through open-heart surgery.  In the grand scheme of things, this is a walk in the park.  No, this is a NAP in the park.

Luckily, he has tough teeth (thank goodness).  He had one small cavity, they cleaned him up good, noted he's lost a couple baby teeth, and said he's looking healthy.  Come back next year.  Yay!!

Ears:  So, Jake never tells me when his ears hurt.  No sign language, rarely any ear itching/tugging, nothing.  If he hurts, he does nothing to indicate the pain.  I saw one itch and boom! I was calling the ENT.  Guess what? Ear infection. And a perforated ear drum. And the t-tube may or may not have come out on the other ear.  Surgery.

That's okay.  This was not our first...or the second...or the third time at this rodeo.  Plus, our ENT is uh-maz-ing!  We set up an appointment, Jake walked in (a week after his teeth), gabbed with the pre-op nurses, grinned, flirted, and walked right back with them when it was time for surgery.  He was a ROCK STAR!


I hung out in the lobby until they were done (about twenty minutes) and then they called me into recovery.  I knew Jake has a hard time waking up after anesthesia, so I expected a bit of time in the room with him.  He did not disappoint.  I think we were back there for a good forty-five minutes before he was awake enough for me to dress him. Not even grumpy. Thank heavens!  He got to ride out in a wheelchair, and we were home to snuggle and relax for the rest of the day.  No pain meds, and no grumpiness.  By the next morning, he was good as new.

Circumcision/Eyes: These procedures were done together.  For both, I was told he'd be sore for a day or two and then be back to normal.  Once we got to the hospital, I was told by the eye doctor there may be a little bit of bloody tears after surgery, but that was normal. He'll be good to go in a day or two.

Same sort of response from the Urologist.  No problem. I got this.

When Jake came out of surgery, he was in PAIN. Not discomfort. PAIN.  He moaned and cried, and insisted on a wet washcloth on his eyes while refusing to let anything near his penis. I'd never seen Jacob panic, but he was panicking if anyone came near his penis. I felt horrible for the little guy.

During the 2-3 hours we waited for him to wake and try to eat, the nurse mumbled about how all the doctors tell their patients the surgery doesn't hurt, but then after they get rolled into recovery, they realize how they'd been mislead.

She informed me past patients say the eye surgery is like having sand thrown in your eyes and not being able to do anything about it. And I'd heard from someone else how their husband had a circumcision as an adult and said it was one of the most painful weeks of his life afterward.  I tried very hard not to take my frustration with the doctors out on the nurses. And, of course, I didn't see the doctors again after I'd seen Jacob.  Besides, what were they going to do? Undo what had already been done? Yeah...nope.

After several hours, we managed to get about 15 goldfish crackers down Jacobs throat, and he drank 1/3 of an apple juice.  We managed to convince him to take a ride to my car in a wheelchair, but he refused to put anything over his penis, so we had to drape a blanket over the handles of the wheelchair and drape it over his knees so that he wasn't flashing the world en route to the car.

I gently sat him down in his car seat, and he drove home, free as a bird, panting. After walking from the car to the house, buck naked from the waist down, he laid down on the couch, happily took some liquid Hydro's, put a washcloth over his eyes, and laid there, stiff as a board.

Jacob didn't put a diaper on for three days.  On the fourth day, KC managed to get one on him while I was at work.  When I came home, I changed him before bed, and he had a panic attack, the pain was still so severe. He had panic attacks for weeks afterward.  He also had a stream that hit the wall now. Yeah, he had to re-learn how to pee. 

Jake's eyes looked like the blood vessels had ruptured for two weeks, and I nearly took him to the emergency room because he had some sort of tissue bulging from the corner of his eye for quite a while. But eventually, it calmed.  Now, more than a month later, his eyes still get red easily, and he is hyper-vigilant about his penis. 

Was it worth it to correct crossed eyes and increase his stream? I'm not entirely sure.  I certainly would have thought much longer and harder about the process if I'd know this would be the result. 

Next time, I won't be nearly as naive.

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