Saturday, March 30, 2013

In Other News...

Nolan has an ear infection. Again. It is the right ear, which is the ear that is almost always infected.

He's already on antibiotics.


Tonsillectomy Recovery: Days 5-9

I was so giddy over how well Matt's tonsillectomy recovery was going. I should have known we were headed for trouble! The night after Day 4 was the worst night ever.

He woke up at 1:30 am and was screaming, yelling, and shaking. We gave him some Lortab and he continued to scream and shake. We debated taking him to the emergency room because he couldn't talk, couldn't calm down, and was shrieking and shaking. About 2 hours after it started, it ended. He fell asleep, ushering in a new phase of recovery. I shall call these days the Days of Pain.

Days 5 and 6 were the worst, though the nights were far worse than the days. Fortunately, he was doing a bit better by the afternoon of Day 6, when Grandma arrived for a visit.

The nights are still a bit of a challenge, but fortunately we are past the worst of it today, on Day 9. He is able to go without pain medication during the day. He does need a bedtime dose, but at least we got a FULL night of sleep last night. The first full night of sleep in approximately... forever.

Here's to Matthew's recovery being (almost) complete, and to happier days ahead!

Monday, March 25, 2013

Tonsillectomy Recovery: Days 1-4

Day 1: Matthew had a rough day on the first full day after surgery. This day has been his worst (so far) and the poor little guy was weepy and stayed on the couch all day. We did manage to get him to take his Lortab for pain relief, but only with great effort. He would not eat or drink. When we gave him his antibiotic in the evening, he vomited. 

Day 2: After having a miserable night, Matthew woke up and took his Lortab. Within an hour he was quite chipper. He drank and ate a Popsicle. By the afternoon, he was playing his new Skylander's video game. 

Day 3: With Lortab every 4 hours to ease the pain, Matthew did wonderfully. He was up and about, playing with his new Lego set from Grandma L. He and Nolan enjoyed watching the movie Wreck It Ralph.

Day 4: Matthew is a little fussier than he has been for a couple of days. The back of his throat is white and scabbed, and I suspect his pain level has gone up a notch. He is drinking, though, so everything is fine. I made him butterscotch pudding and he ate nearly all of it.

Saturday, March 23, 2013

Signs of Childhood Sleep Apnea

Several people have asked what led to my request for a sleep study for Matthew. I thought I would write down some of the signs and symptoms that caused me to realize he had a high probability of having sleep apnea.

Firstly, Matthew has always had epic melt-downs. Particularly in the afternoon and early evening. Since this pattern is common in toddlers, I largely ignored it when he was younger. When the pattern continued at the age of six and seven years old, however, I knew something had to be causing the tears, anger, and inability to function past 3:00 pm.

Matt also has "tunnel vision" and it is impossible to get his attention. He obtains a glazed-eye appearance and you can call his name over and over again with no response. If you tap him on the shoulder, he will "snap out of it" and respond.

These two things would not be enough to definitively say he had sleep apnea, but I have a little secret to share.

When everyone else was shocked that Matt had laryngomalacia, I was expecting the diagnosis.

In May of last year, I heard a sound that caused me to look twice at the boy sleeping on the sofa. Stridor. Not snoring (stertor), but stridor. My heart thumped a little harder, and I took a video. I posted it to a laryngomalacia support group I belong to, and everyone agreed it sounded like stridor. Here is the video from last year:

 After that afternoon, I rarely heard stridor from Matt. It is very soft and difficult to hear, but I know that sound very well. Matt was growing well and coping well in school, so I decided to tuck it into the back of my mind and ignore it until it presented a real problem.

The real problems began this year in school. Matt can't focus in school. Suggestions of ADD had been tossed around. His teacher, for example, stated that everyone would be lined up at the door, and Matthew would still be at his desk. She would tap him on the shoulder and say, "Hi, buddy, all of our friends are lined up at the door. You need to join them."

Matthew would say, "Oh, why didn't you call my name?"

"I did, buddy, three times!"

And the after-school meltdowns became worse. He couldn't play tennis, because he would be a sobbing heap on the tennis court. He cried when it was time to do anything: to eat, shower, read, or practice piano.

It was time to take action. When Nolan had his ENT appointment in the fall, I mentioned his mouth-breathing, crying, and "ADD" ways to the specialist. She said, "You don't need a referral. How old is he? Seven? Get him in. NOW."

Of course, this is when I preemptively booked the sleep study to save time, since I would have bet money on the fact he had sleep apnea. And the sleep study showed that he had obstructive and central apneas. His sleep architecture was seriously disturbed. No wonder we had an unfocused, crying mess of a boy on our hands every evening.

I had every finger and toe crossed, hoping it was "just" big tonsils and adenoids. When everyone noted that his tonsils were not big, I was pretty sure we were dealing with laryngomalacia.

Despite the cause of the apnea, the symptoms are similar for children who are sleep deprived:

  • Bed-wetting
  • Behavioral problems (tantrums, inability to cope, crying)
  • Exhaustion (falling asleep instantly at night, in the car)
  • "Zoning out" (may be confused with ADD)
  • Snoring may or may not be present
  • Growth failure (Matt did not have this problem)
  • Restless sleep 
For those parents who have children diagnosed with ADD or ADHD, please, please have your child assessed for other disorders that may mimic or cause ADD/ADHD. The American Academy of Pediatrics states that:

  1. 95% of children with obstructive sleep apnea have attentional deficits.
  2. For children with full syndromal ADHD, 20-30% have obstructive sleep apnea.
These statistics are from several research studies (found here) that indicate children with ADD/ADHD should be assessed for sleep apnea and treated if apnea is found, as a significant improvement in symptoms is seen after the child's obstructive apnea is alleviated.

Friday, March 22, 2013

Tonsillectomy Recovery, Day 1

Matt slept peacefully last night. Dennis and I made the decision not to wake him for pain meds, as we were a little concerned about the effect of narcotics on children with sleep apnea (there are some cases of children dying in their sleep with narcotics after tonsillectomies, particularly with a history of apnea). The risk is very small, but we weren't willing to take it. He slept through the night without a whimper.

I checked on Matt at 7:30 am and his eyes were open, but he wasn't moving. I asked him if he wanted me to carry him downstairs, and he nodded infinitesimally. I carried him downstairs and put him on the couch. I went upstairs and poured out his Lortab dosage. He took it with tears, as he was in significant amount of pain.

"Dummy medicine," he said, "why can't it work faster?"

Two hours later, he still wouldn't sip juice or try a Popsicle. I don't care about whether or not he eats, but I want to keep his fluids up.

An hour later, I did get him to take a tiny sip of Kool-Aid. An hour after that, I gave him a second dose of Lortab.

He requested a root beer Popsicle, and I obliged - he ate the entire thing, which makes me feel better about his fluid levels. He is not moving much and the day has centered around watching movies on Netflix and cartoons. I kept Nolan home today since we have lake effect snow and I honestly don't think I could put Matt in the car for a ride around town.

We get to play "Pharmacy Pick Up" today, as the ENT's computer system still has Rite Aid listed as our primary pharmacy. This is awful, of course, since Rite Aid's pharmacy does not actually carry medication. At least, they never carry the medication we need. Last time, they didn't have Augmentin. This time, they don't have Prilosec.

Tonight after work, Dennis will drive to Pharmacy Innovations to pick up the Prilosec (Rite Aid automatically sent the prescription there), Rite Aid for Matt's Bactrim, and then to Wegman's for Nolan's Augmentin.

He's also going to Sam's Club to buy Matt a special surprise - we decided to buy the boys the Skylanders game for the wii. They are going to be very excited about this, as we don't typically buy video games for the boys.

In the meantime, we are hanging out and enjoying the beautiful spring weather.

Tonsillectomy and Adenoidectomy: Surgery Day

Matthew's check-in time was at 11:00 am, which gave us plenty of time to get ready for the surgery. We didn't have to leave the house until 9:00, so the boys watched TV and simply relaxed until it was time to go. We even managed to exercise the dog a little before we left for the day.

We have so much snow in Jamestown, and it was surprising to see the snow disappear as we drove up the I-90. There was almost no snow in Buffalo! We arrived at the Sister's Mercy Ambulatory Surgery Center and checked in. Matt wasn't taken back until nearly 1:30 pm, so we had a bit of waiting to do. I am so grateful for our tablet computers. Matt played the Samsung, Nolan played the Kindle Fire, and everyone was relatively content for the waiting time.

They called Matt back and we did the pre-op paperwork. Sister's Mercy is pretty great and gave Matthew stickers, paper, crayons, and a coloring book.

The staff remembered our family. Nolan had a floppy, vomiting, hypoglycemic attack before his bronch and 5th set of tubes, so we are a memorable group of people. They took Matt's history, which is not very extensive. It was nice to mark "NO" to hearing and vision problems, for example. I did tell them he struggles with constipation, but obviously that isn't related to tonsils and adenoids.

The anesthesiologist came and asked if he had any loose teeth - just the top front tooth is loose, and they said he might lose it during surgery. I also mentioned his heart murmur and said he had an echocardiogram the day prior, but we didn't have results. I said, "No news is good news, right?" The anesthesiologist responded, "I wouldn't assume that."

She listened to his heart and said it sounds like he has mitral valve regurgitation. Nolan has the same situation... he hasn't had an echo since his heart murmur developed, but I am interested to see what Matt's shows when it is back in the pediatrician's office.

We confirmed the surgical procedure (bronchoscopy and microlaryngoscopy, then tonsillectomy and adenoidectomy). The nurses brought Matt warm blankets and he snuggled in. He showed the anesthesiologist his drawing of Mars, and she was impressed that he knew his planets. She asked him what the closest planet to the sun was, and Matt said, "Mercury." Gotta love my space-loving boy. Then they rolled my sweet boy away into surgery.

While Matt and I were in the pre-op area, Dennis took Nolan to Panera Bread for some lunch. He brought me a cinnamon roll, which I wolfed down. I was a very hungry momma by 2:00 pm! At around 2:20 pm, our beloved ENT called our names and we went into the conference room.

"I have a video to show you," she said.

And I knew. I knew right then that Matthew didn't have apnea due to big tonsils and adenoids.

The video showed the camera snaking down our boy's airway, which was red and incredibly swollen. The base of his tongue and entire upper airway were thick and burned.

And then she got down to his larynx. The thick, floppy airway completely collapsed over his vocal cords every time he tried to breathe. It was a complete occlusion - the reason we don't hear much stridor from Matthew is because there is no air flow at all - his airway completely closes when he attempts to breathe.

Matthew has laryngomalacia and reflux. First diagnosed at age SEVEN. This is not the typical situation, as most infants who have laryngomalacia are born with it and it resolves by the age of 2 years.

She did take his tonsils and adenoids - the adenoids were occluding 50-60% of his airway, so it is good they are gone. The hope is that we can "buy" enough airway space with the removal of the tonsils and adenoids (and treatment with anti-reflux medications) that Matthew will have an improvement of his apnea.

We have been down this road with Nolan, however, and I am not optimistic. Matt's laryngomalacia is severe and I am sure we are heading down the road to a supraglottoplasty for him.

Soon we were called back into recovery and I was able to see my boy. He was crying as a reaction to the anesthesia and I was grateful the IV was pumping fluids into him before our long ride home. They gave him a dose of Lortab and he fell asleep.

We were on the road home by 4:00 pm, with lake effect snow creating white-out conditions. Matthew was exhausted and in pain. His most frequent comments were,

"This is not fair."
"Dummy surgery!"
"My mouth really hurts!"

I felt heartbroken for him. It is awful seeing your child in pain. By the time we got home, he was overdue for his medication. Dennis went to the pharmacy to pick up the prescription. Matt snuggled into a blanket on the couch and didn't move for the rest of the evening.

We put him to bed and were happy to have this day done and over with.

Wednesday, March 20, 2013

Echocardiogram and EKG: Matt's Pre-Op Tests

We woke up to a beautiful morning on the first day of spring. The sun was shining, the flowers were blooming... oh, that's right. We live in Western New York.

Well, it is the first day of spring, even if it is 22 degrees (F) and we're in the midst of a lake effect storm. Matt had an appointment for an EKG and echocardiogram at our local hospital at 8:00 am, so we were up early to clear the snow and get on our way.

The local hospital is very close to our house, which was very convenient. Most of our appointments have a 2 hour drive (each way) as a minimum, so it  was delightful to drive 15 minutes and arrive early for the appointment. We checked into the cardiology unit, and were informed that the pediatrician's office hadn't faxed over the order. They tried to contact the pediatrician's office while Matt amused himself.

The pediatrician's office doesn't open until 9:00 am, so there was a lot of back-and-forth with the paperwork issue. They finally decided to take Matt back and start the echo while waiting on the order.

The echo took a while to complete, and Matt giggled frequently (he's very ticklish). I was grateful he was cooperative, as he has a history of completely freaking out over anything that involves a person in a white coat (dental x-rays are a nightmare). The order hadn't arrived yet, and no one was sure whether an EKG should be performed.

The tech finally returned and brought the EKG machine with her. Since we didn't have the order, the safest bet was to do the EKG - if it wasn't on the order, then she'd throw it away. She didn't want us to have to return in the middle of a lake effect snow storm. I was highly appreciative. They did the EKG, which only takes a few seconds to perform. The receptionist arrived with the order just as we were wrapping things up - the order did include an EKG, so it is good that we had it performed.

I took Matt to Tim Horton's for a doughnut (he chose an Easter Egg shaped donut) and we headed home. I let him chill out and have his doughnut, then took him to school.

I haven't heard any news regarding the echo or EKG yet, so I assume no news is good news. Hopefully it was just an innocent murmur.

We report for surgery at 11:00 am at Sister's Mercy in Williamsville tomorrow.

Tuesday, March 19, 2013

Crazy Busy: Matt's Pre-Op Physical

Matt had his pre-op physical today. We've been concerned about some constipation that we couldn't get resolved - parents who have dealt with the severe and chronic form of this problem will sympathize. We tried everything, and I mean everything to get the problem to pass (no pun intended).

We think things are finally going in the right direction, but the nurse practitioner ordered a KUB (a x-ray of the abdominal area) to make sure things were cleared out before surgery. After a tonsillectomy, the standard protocol in our area is to place the child on Tylenol with codeine - and narcotics tend to cause constipation in even "typical" kids. In any case, I should have the results of the KUB this afternoon.

They also drew blood to make sure Matt doesn't have celiac disease or a thyroid disorder, since those can cause chronic constipation. It took four nurses to hold him down for the blood draw - he is not a fan of needles.

The nurse also detected a heart murmur. Matt was born with a small hole in his heart and we thought it had closed up (he never had a follow-up echo to verify). The murmur, in conjunction with the rare PVC's on his sleep study report, raise a bit of concern. He's having an echocardiogram tomorrow morning to verify that his heart is OK before he is put under general anesthesia on Thursday.

So far, our week looks like this:

Monday: Nolan's pre-op in Buffalo (check)!
Tuesday: Matt's pre-op, bloodwork, and KUB (check)!
Wednesday: Matt's echocardiogram
Thursday: Matt's bronchoscopy, tonsillectomy and adenoidectomy
Friday: Nothing. Thank goodness.

As a side note, I am glad they are looking at Matt's airway. His tonsils are not especially large, and this is a similar situation to Nolan's apnea (which was not caused by tonsils and adenoids). If it is a malacia causing the apnea and not big tonsils, then we need to address that issue separately. I still hope the tonsils are the issue, though, as sometimes the tonsil beds are large and they can't visualize how big they are from the front of the mouth.

Monday, March 18, 2013

ENT Visit and Culture Results

Nolan had his follow-up with the ENT today. This appointment was supposed to be a post-op for his revision supraglottoplasty, but turned into a pre-op since his supraglottoplasty was thwarted by a "massive airway infection."

I put "massive airway infection" in quotes for reasons that will become apparent in a minute.

In any case, it was a 2 hour drive to the office, an hour and a half wait time, and finally we were called back to see the doctor. Nolan was weighed and measured, and we waited.

The ENT came in and reviewed his records, and Nolan looked at Where's Waldo? I asked if his culture results had come in, and his ENT looked at his records. The culture results weren't there.

The nurse was sent in search of them, and she returned with the report.

The cultures were negative. Nolan never had a massive airway infection.

We are not sure what the large amounts of pus in his airways was from. It wasn't bacterial in nature.

The reason he never had any symptoms of infection (no fever, no cough, no congestion) was because he never had an infection to begin with.

So our poor little boy was put out for surgery, scoped, and then told he would have to go through this all over again when there wasn't any infection in his airway at all.

I asked the ENT what all the thick white pus was, if it wasn't an airway infection. She shrugged her shoulders and said, "Maybe it was just thick mucus. At least we know now."


In any case, he is remaining on antibiotics long-term, since we don't know what all the junk in his airway and lungs was. He's also staying off C-Pap for the foreseeable future. This means we will have a zombie-boy for the next few weeks, as his energy levels dip considerably when off C-Pap.

The repeated surgery attempt will be on April 9.

So, Been-There-Done-That parents... what in the world would show copious amounts of "pus" on a bronchoscopy that isn't caused by a bacterial infection?

Friday, March 8, 2013

Kindergarten Artwork

If Nolan hatched an egg, he would find a "snowy bird." Or a Nowy bird, as the case may be!