Adenoids - Who Needs Them Anyways?

Teddy continued to have several ear infections throughout the past years, including one this winter where the pediatrician asked if an ENT ever evaluated his adenoids. The pediatrician said that adenoids could contribute to ear infections, constant runny nose and slight snoring ... all of which Teddy has. As soon as he said it, I vaguely remembered way back to when Teddy had the dermoid cyst removed from his nose that his ENT said something about his adenoids. I ignored it at the time since it wasn't the priority when he had a cyst that went from the tip of his nose to the lining of his brain.

But, now that those dermoid cyst surgeries were way behind us, it seemed worthwhile to explore removing his adenoids. Our logic is that whatever isn't necessary to Teddy that could contribute to illness in him should be removed. Given his high pain threshold and lack of communication skills, it's often challenging at best (impossible at worst) to know what, if anything, is medically wrong with him. 

His ENT wanted to try a long course of antibiotics first, to see if that resolved things, before considering surgery. Six weeks later, we were back again, still with a runny nose. So, she scheduled us for surgery. She would only take his adenoids. She didn't want to remove his tonsils because they weren't enlarged at all. Since she wouldn't even take his tonsils, we didn't ask her about his appendix or gall bladder. (Hey, we're serious about removing those non-essential, potentially troublesome, extra body parts.)

Surgery was April 17 at 2:30 p.m. Yep, that meant no solid food all day. That part actually went much better than we expected. We went sledding, did haircuts and showers and then headed to Milwaukee. We arrived with enough time to hang out at the mall for a bit riding escalators, which are the coolest thing ever, in Teddy's mind.

Post-op misery, but at least he got a blue gown this time.

Doctors and medical procedures are the worst things ever, in Teddy's mind, at least since his NIH visit. That meant lots of tears, screaming and escape attempts during the pre-op until the sedative finally kicked in. The surgery went perfectly fine, easy and quick. Post-op was tough, as to be expected with the anesthesia, pain and fear of medical places. We managed a few smiles before we were discharged, along with 4 popsicles. Most of those smiles were directed at my aunt, who is absolutely fantastic with Teddy and an incredible resource to our family as she lives in Milwaukee.

He laced that shoe all by himself on the drive home ... knots and all.

The drive home was better than expected with Teddy devouring food and a milkshake by the time we got to Fond du Lac. We picked up AJ from our friend's house, grateful for all the support to make life happen for our family.

It does indeed take a village, and we have an awesome village!

Doctor's Visits Galore

Let's just say that if there was a prize for most doctor's visits or amount of time spent at and/or commuting to doctor's visits for a 28-hour period, Teddy and I would have been strong contenders.

It all started Thursday morning when I decided to try on one of three shirts I was considering donating. Somehow, in the amount of time it took me to pull on one shirt, Teddy hurt himself with a smooth, rounded plastic coat hanger. My first clue was him crying. My second clue was his mouth filling with blood. There was so much blood in his mouth that he couldn't swallow while screaming hysterically. In fact, when he coughed on the blood, my face got splattered with blood.

It took me a half hour of wiping blood away, consoling him and attempting to peer in his mouth with a flashlight to figure out where the injury was. My best guess is that he stuck a coat hanger in his mouth, fell or dropped to the floor and pierced the bottom of his tongue by jamming that hanger into it. The injury didn't go completely through, but I got a glimpse finally of a wicked looking wound that prompted me to head right to the walk-in clinic.

The walk-in clinic took one look at his tongue and said that something needed to be done, but they couldn't do it there. So they walked us down to the Emergency Room. This was our first time back at the ER since the horrible seizure incident in December, so it's not exactly where I wanted to be. Neither did Teddy. Between the pain and the fear of doctor's offices/procedure rooms, he was crying the entire time despite being snuggled by a carrier to the front of my body. (Umm, can I get a gold star for managing to get him loaded on my front and hooking the back by myself 3 times in 1 hour? That's a record for me.)

The ER doctor took one, quick (not quite sure he saw everything) look and said it would heal itself. He said he could put in a stitch, but that would require sedation and would likely be chewed out within minutes. I was fine with that and figured Teddy would settle down pretty quickly once we left.

But he didn't.

Thankfully Dave came home early from work and then spent all afternoon at home while Teddy cried, whimpered, napped for 30 minutes and cried some more. He finally settled down after supper (without eating or drinking much because of the pain). Let's just say it was a long day from 10:30 a.m. when the injury happened until I collapsed into bed at 9 p.m.

Unfortunately, the pain medicine wore off, so Teddy was crying in pain at 3:30 a.m. That meant that all of us, including AJ, were wide awake by 4 a.m. Teddy settled down about 30 minutes after his medicine kicked in, but no one got any more sleep.

Teddy and I took off at 6 a.m. to head to Milwaukee for a couple doctor's appointments. The first was his ENT, which was extremely quick as usual. We'll be getting a call within a week to schedule surgery to remove his adenoids the end of March/beginning of April. This is a good thing in our minds. It should hopefully minimize ear infections and reduce his chronic runny nose.

We enjoyed a bit of time with my aunt before we headed to his physiatrist appointment. This was one of the recommendations from NIH, and I wasn't sure what to expect. I was pleasantly surprised because the person was fantastic with Teddy and spent 1.5 hours getting a really detailed history, observing Teddy's motions and body and discussing recommendations. She's coordinating with the person who does Teddy's braces to adjust them slightly to give him more toe mobility to help with balance, but she doesn't think we need to pursue different (taller) braces. She said we can discontinue the use of his SPIO compression garments once he outgrows the current pair as they tend to provide minimal assistance once he reaches this size. She's also going to put in orders for outpatient PT and speech therapy and coordinate with them about pursuing therapy now and then for the summer.

In case you haven't gathered, a physiatrist is a doctor of physical rehabilitation who coordinates therapies and adapted equipment. We had never heard of that type of specialist before NIH, but I'm excited to have someone to coordinate all his therapy between outpatient and at school as well as all his adapted equipment. I think this will be a good thing for us, and it will likely be paired in the future with a neurodevelopmental psychologist to help understand how to best motivate Teddy to work toward progress. That'll happen this summer, at the earliest, since it will be a series of lengthy appointments to really get to know Teddy. The physiatrist will look the report we get from NIH once we get it and see if it's sufficient. My guess is that it won't be as thorough as desired, so we'll probably go through the process. The appointments should be mostly play based, which really shouldn't be bad. It's just that we need some time between the week of NIH testing and any more extended testing appointments.

After that, we had our drive back home, getting home at 2 p.m. with a full 8 hours of travel and doctors' appointments. Now, where's our medal?

Memories

One of my favorite features of Facebook has become the daily reminder of memories. It's essentially "On this day in history ..." except it's all things I wrote or pictures I shared. So many of the memories are happy or silly and bring a smile to my face. Even the one I saw a few days ago of Teddy in the dryer at 2 a.m. on one of those nights when we did a cookie decorating/explore the dryer party while he was up for 3 hours in the middle of the night.

Two years ago today I updated our family and friends with this:

"Teddy is schedule for surgery November 4 to remove a dermoid cyst from his nose. The cyst runs from the tip of his nose, through his septum, up to the lining of his brain. The doctors are unsure whether the cyst actually punctures the lining of his brain, so a neurosurgeon will be part of his team, hopefully more as a precaution than a necessity. If the cyst goes past the lining of the brain, the surgery will obviously be more complex and have much higher risk of complications. The cyst has deformed his nose, so depending on how much they have to remove to remove the cyst, he may need plastic surgery at a later time.

We expect he'll be at Children's Hospital in Milwaukee for at least three days with this surgery. It's called a nasal degloving, and it sounds lovely--a small incision at the bottom of his nose and peeling the skin back. Like taking a glove off your hand ... if his skin were the glove and his nose the hand.
This cyst was discovered by the imaging studies done after the swelling never went down when he bopped his nose. Instead of a broken nose, he had blood go into the cyst and essentially get stuck there.

As always, we appreciate your prayers. Teddy remains his smiling self and is the least affected by this news, at least until they do his surgery and make him fast again."

I remember, as much as we hoped the neurosurgeon would have nothing to do, wishing that perhaps this cyst had crossed into the lining of his brain ... only if it would be the explanation for his seizures and developmental delays. We didn't want brain surgery, but we wanted answers. If I'm being completely honest, part of us wanted to hope that not only was this cyst the explanation but that removing it could also remove Teddy's symptoms. Our ENT said it was unlikely the cyst crossed into the brain based on the imaging ... and she was right.

I remember how terrified we were to do the surgery, rightfully so because Teddy was knocked out for 7 hours while we waited and paced and waited and prayed. And then we got released from the hospital the next day, much to our surprise. (I suppose it helped Teddy's case that he was trying to stand up in his crib at midnight.) I remember being exhausted and disappointed because I heroically took the first night at the hospital with every intention of getting an awesome night of sleep while Dave spent the second night in the hospital.

But most of all, as I reread this post and all the comments people posted, I remember how much love, support, prayers and well wishes we have from all our family and friends. Teddy and our family have been included in more prayers than I could ever count ... and continue to be. What a blessing for our family!