Showing posts with label circumcision. Show all posts
Showing posts with label circumcision. Show all posts

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.

Monday, November 8, 2010

Finding a Great Pediatrician When Your Child has Down Syndrome - What to look for

Jacob has been home a total of 4 days and we had our first doctor's appointment with his Pediatrician. They were recommended by every doctor in NICU as well as a couple of my friends who have children with Downs Syndrome.  So obviously, I had high expectations.  Aside from the the ladies at the front desk, I was really quite impressed by them.
Down Syndrome, Downs syndrome, Trisomy 21, Down Right Living



 I met with my doctor who checked his oxygen levels (good), his weight (he's gained almost 1 lb since birth), his liver and heart (for heart failure), and an assortment of other things.  She was great about answering all of my questions and taking time with me to make sure I knew exactly what I was in store for.

 Down Right Living - the blessings of having a child with Down syndromeShe made sure Courtney got her flu shot so that Jacob would be less likely to be exposed to the flu.  Since virtually EVERYONE in our family has been sick except for Jacob and me, I asked her when I should come in should I begin to see symptoms of a cold or the flu in Jacob.  She informed me that he has no threshold which means that the first sign of sickness I needed to bring him in.

We talked about the signs of heart failure (our cardiologist informed us to expect heart failure in the first month) which includes weight loss, sweating while or after nursing, panting, an enlarged abdomen from his liver, listlessness,etc. She checked him for the signs and said he looked well.

I asked her about when to get him circumcised, and she informed me that she did not recommend circumcision before his heart surgery unless he was already going to have another procedure because it could be too traumatizing for him right now (wow!)

Then she informed me that she wants to see me every week to monitor him and his health.  Plus, she does NOT want him in the waiting room when we come to visit where he'd be exposed to the other sick children, and that she'd make sure I was immediately directed to a room in all subsequent visits. 

 Down Right Living - the blessings of living with a child who has Downs syndromeI left the appointment feeling like I now had a doctor that:
 1) knew what she was doing and had a lot of experience in Jacob's disability.
 2) She cared about my concerns and was happy to spend as much time as I needed to make sure I was fully informed and prepared for upcoming events.
 3) I had been WAY too nonchalant about Jacob's condition and I needed to be much more diligent about his heart defect and keeping him germ free. 

Needless to say, I am hunkering down and preparing to be a hermit for the rest of the winter.  Luckily, the darned boy is so cute I think I could spend a YEAR just cuddling and watching all of his facial expressions!  It's hard to give him up to his dad in the evening so that I can work and get things done. 

He literally eats, then sleeps for 4 hours and repeats.  It doesn't matter how loud it gets around the house, or if I need to take him in the car to drop Nathan off for school. He just sleeps through it all and wakes up just long enough for me to feed him again.  Needless to say, it makes getting things done around the house MUCH easier! :)  How was I so blessed to have such a relatively easy baby? ....OK, aside from all of the doctors appointments I will apparently be having each week!!!