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!

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.

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.

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.

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.

ENT Appointment, Part 3: Tonsillectomy and Adenoidectomy Scheduled

After the ENT finished with Nolan, she moved onto Matt. By this time, we were all exhausted (and hungry): the office was running 2 hours behind schedule, so it was now 1:20 pm and our original appointment time was 10:45 am. No lunch = grumpy boys.

I gave the ENT Matt's sleep study results, which we had ordered through the pediatrician. As a helpful hint to other families, if you suspect sleep problems and are booking an ENT appointment, make sure to get a sleep study run first. It will save a lot of time and an appointment (and copay). If we hadn't had this run, this appointment would have been a consult, a polysomnogram would have been ordered, and then we would have had to return in a month or two to get the results. Since we already had the sleep study results in hand, we saved a $25 copay and about 2 months worth of time.

Matt's sleep architecture is abysmal (I wrote an article about sleep architecture - you can find it here). He has no stage 4 sleep and only about half of the REM sleep he should have. This explains a lot of his behavior and his complete inability to memorize facts (REM is required for memory formation). He desaturates to the low 80% level, which causes him to wake frequently. He also has a lot of periodic leg movements (so does Nolan).

She reviewed the results and was not very concerned about the central apneas and the heart rhythm issues. She sees both of these problems in children who have long-standing, untreated apnea. Matt is a mouth breather, so the problem is likely due to tonsils and adenoids. Since both of our boys have/had central apnea, there is also a chance that our kids just have central apnea when they're young - it could be a genetic thing. It is more likely that the central apnea is a direct result of long-standing obstructive apnea.

Matt is going to have a tonsillectomy and adenoidectomy on March 21, just a few days before Easter Break. His ENT is going to do a bronchoscopy and sleep laryngoscopy just before the surgery, because she wants to make sure he has no other airway anomalies. It would be unlikely, since he doesn't have the reflux or other health issues that Nolan has, but it is better to verify that he doesn't have any airway malacias.

Matt's surgery will be at an ambulatory surgery center, and he'll be released about an hour after surgery. The "surgery" part will be the easiest portion of his procedure: the recovery will be the hardest. Tonsillectomies are horrendous. We've been through 2 of them (Nolan had his tonsils and adenoids removed when he was 2 years old, and he had his lingual tonsils shaved at the time of his last supraglottoplasty).

I'm worried about getting Matt to take the Tylenol with Codeine (he's awful about taking medication of any kind). I'm worried about keeping him hydrated. I am going to blatantly bribe my child provide positive incentives to get him to drink: I have a "reward" bag started. Matt will have a follow-up appointment on June 3 to see how he is doing post-surgery. He'll probably need another sleep study to verify his apnea is gone (and so will Nolan, so we'll probably do another 2-for-1 sleep study).

Our family will have two surgeries in a back-to-back manner. Nolan's will be harder for the actual surgery - staying inpatient is always trying. His recovery will be easier to manage because we have the g-tube and can give him meds, food, and hydration via that route while he is recovering. Matt's surgery day will be easier because he will be home that same evening, but his recovery will be much more difficult since we need him to cooperate to drink and take his medication.

One thing is sure: I am looking forward to the end of March, when everyone will be recovered and on the road to better health!

General Update, Or In Which Nolan's Tonsillectomy Has Amazing Benefits

People have been asking if Nolan is three lately. This wouldn't normally be a striking question, since he will be three in a little over two months. Earlier this winter, however, we had been asked how many months remained until he turned two.

Nolan isn't really very short, but his "toddle" run and low weight made him look a tad younger than his true age. He was also tired much of the time, so we had to carry him a lot- adding to the age confusion.

Three months ago, we couldn't walk the length of the mall without Nolan crying and falling to the ground, too tired to go on. I actually had visions of carrying a five-year-old Nolan on my hip to the bus stop, because he literally couldn't walk more than 100 feet without collapsing in exhaustion.

Then he had his tonsillectomy and adenoidectomy this April. I expected a reduction in snoring and better breathing. We had hoped for better sleeping. We did not expect the sudden burst of energy and general health following the procedure. Nolan's post-tonsillectomy health improvements include:

Weight: While we were at the vet's office, I decided to throw the boy on the scale. It was accurate for our cat, so I'm pretty sure it was accurate for Nolan. The reading? Twenty eight pounds. Twenty eight pounds. Less than a year ago, he was nineteen pounds. This is some major weight gain, folks. If the vet's scale was accurate, he's now in the 20% range for weight. Much of this improvement was made with the Nexium, but the tonsillectomy seems to have added some benefit to his appetite. We have discontinued the DuoCal, and he is eating food without calorie supplementation.

Energy: Nolan has become, frankly, a bit of a terror with his energy level. Running laps around the house, running ahead of us in the mall, racing his brother in the driveway... doing what a typical two year old should do.

Height: Nolan's height was never much of a concern, but it had stalled out and dropped from the 80% to the 10% mark. He is growing again, and is now almost 36" tall. We're happy to see him climbing the charts and outgrowing his size 24 month shirts!

Happiness: While his screaming/crying episodes are not completely gone, they are greatly diminished. It is a rare morning that we have an hour of "inconsolable Nolan." His general happiness is improved.

Sturdiness: Perhaps because he is running more, his legs seem a bit more sturdy. He doesn't fall as often when he runs, and he seems less "loose" in his stride. This is probably a result of better muscle tone, since he is running around a lot more with his increased energy.

We are absolutely thrilled that Nolan is doing so amazingly well. You may have noticed that I didn't include "sleep" in the benefits- "sleep" seems to be a mixed bag. Since the tonsillectomy (2 months ago), Nolan has slept through the night six times. This is good, because it is approximately six times the number of nights he has slept through since birth. It is not, however, the improvement we had hoped for.

He also still snores, and has some noisy daytime breathing. We're not sure what to make of that, but the sleep study in August will give us more information on whether he is having any apnea. Judging by his increased energy levels, his quality of sleep must be improved (even if the quantity is not greatly improved). His nighttime wakings may also be a product of his severe reflux, so we're trying not to read too much into his nighttime capers.

If we had known a simple tonsillectomy/adenoidectomy would have had this much effect on Nolan's well-being, we would have been much less worried about having the surgery done. Here's to more energy and more growth from this point forward!

ENT Visit and Noise Overload

Nolan's tonsillectomy/adenoidectomy/PE tubes post-op appointment was today. These trips to Buffalo are quite wearing, with four hours in the car (round-trip). The ENT is Nolan's least favorite doctor (apart from the urologist, though we rarely see him anymore). I promised him a treat after the appointment, since he was quite upset about seeing the ear doctor.

The post-op appointment went well. We saw the nurse practitioner and she noted Nolan's runny nose (he nearly always has a cold) and checked on his tubes. They're in and functioning, which is no big surprise since our audiologist checked them on Thursday. We also discussed his post-operative state, which is generally good. He still does not sleep through the night most nights, but this could be due to his reflux and not necessarily due to apneas (central or obstructive). The sleep study in August will tell us if the obstructive apnea has been eliminated, and hopefully the central apnea will be greatly reduced, as well.

She was concerned about having to increase the volume on his hearing aids, but they don't have his hearing test report yet. I told her that his hearing levels aren't drastically different, but his aids had been set to levels recorded a year ago. There has definitely been change in a year, so he needed to be reprogrammed. She was concerned about the progression, though we're not sure if it is a permanent conductive or permanent sensorineural change (we didn't run bone conduction). John Tracy will run testing in July, so I'm not worried about it. Either way, it is a permanent change, so the increase in amplification is only a good thing.

We left the ENT's office in Depew, and I thought about heading to East Aurora to the Explore and More Children's Museum. Unfortunately, they're closed on Monday. Not knowing what to do, I headed toward Orchard Park and took them to Chuck E. Cheese.

Chuck E. Cheese must be the worst place on the planet for a deaf or hard-of-hearing child. The "background noise" must have been at 90dB! Still, Nolan was literally dancing for joy, and we were the only people in the place. The employees had just run the tickets through the machines, so they told the kids that they could grab all of the left-over tickets. Matt and Nolan ran around the arcade in a giddy, hyperactive state, clutching tickets and thrusting tokens into games and rides.

This ride had its own camera.

I did use sign language at Chuck E. Cheese, because Nolan couldn't hear anything in the place. I was concerned about losing him in the arcade, but I only handed him one token at a time. Within a few seconds, he would reappear, calling out, "Money! I need more money!"

Pizza, juice, and several cheap plastic "reward" toys later, we headed home. We don't have to see the ENT again until October, which is a great relief! We are now "doctor free" until late June (kidney ultrasound- routine monitoring because of his posterior urethral valves)!

T&A: Day 9 Post-Op

Nolan's tonsillectomy recovery seems to be complete, and we are all grateful! He slept at night with no pain medication, only waking once to come into our bed. There was some fussing, but he fell asleep in a few minutes. He did wake up fussy, so I gave him some Tylenol with Codeine this morning.

He's been doing great today, and it appears we are past the worst. For Nolan, days 3, 6, and 7 were the worst, particularly at night. Last night's restful slumber indicates he is on the mend, and he has been playing rather nicely today.

I am so glad to bring this little chapter to a close!

T&A: Day 8 Post-Op

Last night was bad. Really, really bad. Nolan woke up at 12:38am, which was brilliant because he was allowed to have more codeine at 12:30am. We gave him his medicine, but he was quite unhappy so I took him downstairs to settle on the couch and watch some TV until the medication kicked in. We both fell asleep on the couch and Nolan woke again at 3:00am, absolutely hysterical.

He screamed for about an hour, and nothing would help. He told me his throat hurt, that his tongue hurt, and that he wanted his cup. It was too early for more medication, so I tried to soothe him on the sofa with his sippy cup and beloved "black bear." He simply couldn't settle, alternately yelling for "Dad" or his cup. He would also reach for me, grab me in a hug, and wail, "Want wuv!" I gave him all the "wuv" I could, but he wanted down and went upstairs. Dennis picked him up and he kept wailing "Dad!" We finally realized he wanted "bed." He felt awful, but he wanted to lie in his own bed with his sippy cup and his bear. We tucked him in, and he fell asleep, exhausted from his 2 hour long scream-fest.

He had ice cream for breakfast, and by 9:00am, you would never know what a terrible night this kid had been through. His days are much, much better than his nights. He is playing well, not as whiny, and I really think we have turned the corner. Perhaps this will be the end of the pain- I certainly hope so.

Maybe we'll all get some sleep tonight.

T&A: Day 7 Post-Op

Nolan is soldiering through his recovery. He woke at 4:00am in agony, and cried for another few hours until more Tylenol with Codeine kicked in. He's doing "OK" today- alternating between crying and being just fine- when the Tylenol with Codeine wears off, he is less than happy.

We did manage to take a library trip today and went with some friends to the playground to get some sunshine. Nolan cried a lot at the playground, but it seems to have done him some good because he is happy and quiet now.

His ear isn't draining as badly, so the Ciprodex is doing its job on the ear infection front. In a few more days, we should be beyond the tonsillectomy pain and ear infection, and I will be thrilled to have our happy little boy back!

T&A Post-Op: Day 6

Nolan, doing fairly well on the tonsillectomy front

Nolan's left ear is still draining. I placed a call to our ENT this morning to see if this is a normal reaction to the surgeries, or if we have a problem in that ear.

The doctor called back, and we definitely have a problem. The "normal" drainage would have been seen on days 1-3 post-op, and we should not have drainage developing after we completed the Floxin drops. In other words, Nolan has an ear infection, only six days after receiving his tubes. Beautiful.

Besides the generalized "ick" factor of having a ton of discharge from the ear, there is also the danger that his tube will clog and he will perforate around the tube. We had this happen to his right ear in December 2008, and the results were not pretty. To prevent this from happening again, he will be placed on Ciprodex ear drops for 14 days. Nolan is just thrilled, let me tell you. He just loves ear drops. For the next two weeks, we get to put a squirming toddler in a headlock and dispense the eardrops. If the infection clears up, we get to wait until our six-week checkup before seeing the ENT again. If it doesn't, then we have to get back to the office ASAP.

As a side note, cleaning out his hearing aid is a rather nasty business with all the drainage. Thank goodness for a lot of soapy water, his wire cleaners, and my strong stomach.

On the tonsillectomy front, things are going fairly well. This morning he was in a bit more pain than on the previous two days. We were warned that there would be some bad breath following the surgery, but hadn't noticed it- until today. Boy howdy, that breath could slay people. He is also starting to shed some scabs. I won't tell you how I know this, because of the general "ew" factor. I will say, however, that I wish Nolan would keep some things to himself. Blech.

He's still not big on fluids, but will nibble on graham crackers, waffles, and wheat thins. To get some fluids into him, we might be having popsicles for dinner tonight!

T&A: Day 5 Post-Op

Keeping track of medications

Last night I was a bit concerned because Nolan's temp went up to 99.9 and he was feeling rather iffy. His left ear was still draining discharge, and we ran out of the antibiotic Floxin drops last night. He also woke up several times during the night, and even fell down the stairs at 2:30am. I thought today might be a tad rough.

Day Five is going very, very well. He is still "warm" at around 99-100 degrees, and the left ear is draining, but he is happy and seems to be in little or no pain. The fever is normal, according to the post-op instructions, as long as it doesn't go past 102 degrees Fahrenheit. The ear drainage is a tad concerning, but we will call the ENT on Monday to see if we should get more Floxin ear drops to help clear it up.

In the meantime, we're just watching to make sure his fever doesn't climb and we're still trying to keep his fluid levels up. I had no idea a kid would prefer waffles to juice post-tonsillectomy!

T&A: Day 4

Nolan's "prize" from his Aunt and Uncle

Day Four is dawning a much better day: Nolan is eating again, and even ate a whole waffle at breakfast time. We're still having difficulty with the fluids, but he's eating Jello and Popsicles, so that should cover the fluid requirements.

He is actually playing this morning and acting silly again, which is a relief. I am concerned about some drainage from his left ear: the Floxin ear drops won't even go down the ear canal. I certainly hope he isn't getting an infection in that ear so soon after surgery. He hates the ear drops more than any other medication, so getting an infection would be a real bummer (we'd have to increase the number of drops).

Here's to a much happier day- hopefully this means we've turned the corner with recovery!

T&A: Day Three

A rare moment of calm on Day Three.

Day Three is not going as well as the first couple of days. Lots of crying, screaming, and generalized unhappiness seem to characterize today. Nolan's also refusing popsicles, which are the only fluids he's been getting (he won't drink anything at all, even though he'll clutch his cup for comfort).

Let's hope that codeine kicks in so the little guy can take in some fluids...

Tonsillectomy/Adenoidectomy and PE Tube Surgery

Nolan was surprisingly cooperative and in a good mood on Tuesday morning as we headed up to Buffalo Children's. He allowed the nurse to take his vitals, we discussed the runny nose issue (his lungs were clear, so we were allowed to proceed), and we headed down to the surgical waiting room. Things were on-time, so the little guy only had to wait for 2 hours and 15 minutes once we arrived at the hospital, and Nolan was entertained by Mickey Mouse cartoons on the waiting room television.

Our ENT came in and took our little guy from us, and we waited for about an hour until the pager went off to let us know he was out of surgery. Everything went very well, and Nolan was taken directly to the PICU (Pediatric Intensive Care Unit) for monitoring. He was awake and screaming when we arrived, both in pain and confused from the anesthesia.

Because he has severe central apnea, the anesthesiologist only gave him half the dose of Morphine most children receive. He also received no pain medication after the surgery, to ensure that his breathing was stable. Our ENT prescribed Tylenol with Codeine for pain relief, but the Codeine has been cut in half to reduce any potential complications with respiration.

He was quite upset for the first two hours in the PICU, crying and becoming hysterical. He looked like a Very Sad Boy, with bloody ears (from the PE tube placement- this can be shocking the first time you go through the procedure, but sometimes the ears are a tad "messy") and a swollen neck. Luckily, the Tylenol with Codeine took over and he fell asleep.

He slept for about 2 hours, with no desaturations or apneas. When he woke up, he was a tad fussy, but not hysterical. A few popsicles and watching Cars on the PICU television settled him down nicely. He was fussy off and on throughout the day, and fell asleep for the night at 11:00pm.

He set off the alarms quite frequently during the night, but only once for a desaturation and only about 5-6 times for apneas. The alarm was constantly going off for "extreme brachycardia" (slow heart beat) which caused me some panic. The nurses explained this is a common (and normal) heart rhythm in children.

In the morning, he ate some jello and had a few more popsicles. The attending came in the morning to discharge us, and we headed home. Nolan was doing extremely well on the car ride home, even crying for french fries from McDonald's. We kept him to smooth foods that first day, just to be safe with his throat- so no fries for poor Nolan.

He ate macaroni and cheese for dinner last night and had oatmeal for breakfast this morning. He is refusing to drink anything, but will eat Popsicles. We're using Popsicles for his hydration needs, and hopefully it will be enough to stave off dehydration. Keeping up on the Tylenol with Codeine seems to be the most important thing at the moment, as he gets cranky as he gets toward the end of the 4 hour interval between doses. I have been warned, however, that the real pain of a tonsillectomy occurs later in the week- something that someone else who has been there confirmed. Sometime around day 7-10, the scabs in Nolan's throat will fall off and his throat will be extremely raw- this is also the time he is in danger of bleeding.

For now, we are managing quite well and he is becoming quite the Popsicle addict. Those Mighty Minis ("slow melt") are wonderful. I don't know what we would do without them!

Tonsillectomy Update

Recovering with a "Mini Melt" Popsicle

This is short and sweet because we're all tired. The tonsillectomy/adenoidectomy/PE tube placement went exceptionally well, Nolan had a completely uneventful night in the PICU, and we are home. He's eating popsicles and is doing amazingly well when we keep up on the Tylenol with Codeine. So far, this has been much, much easier than I expected it to be!

A more detailed update to follow.

Pre-Registered for Tuesday

I was a wee bit concerned this morning when I noticed that Nolan's cold seems to have gotten worse. He's slightly warm (99.2) and his nose is flowing. His tonsillectomy is on Tuesday, and the pre-surgical documentation states "Call the surgeon if the child has been ill within 7 days prior to surgery."

Beautiful. My mother-in-law is flying in on Sunday to help take care of Matt during the surgery, so I was really, really hoping we wouldn't have to cancel surgery.

I called our ENT's office and told them Nolan had a cold. She asked if he was coughing or had a high fever. Since the answer is "no," she said the tonsillectomy is still a "go" for launch. Some congestion or a head cold are acceptable (after all, the chronic congestion/colds are the reason we are doing the PE tubes and adenoidectomy). The low-grade fever is also OK, as long as it doesn't get above 101.5 F. Nolan normally cycles between 96 degrees-100 degrees anyway, so we're not too worried about the 99.2 degrees he's currently sporting. And no, we never have figured out why he has cyclical temperatures- it's just another part of the whole "mystery diagnosis" thing.

They pre-registered him and gave us the instructions and time of the procedure. No solid food or milk after midnight, diluted juice allowed until 5:30am. Do NOT give him his Nexium (this is a change from our MRI instructions, when we were told to give him the Nexium). We will check into the hospital at 7:30am and the surgery will be performed at 9:30am.

After a $250 co-pay, we're all set for the surgery on Tuesday. I am really praying that the rest of this cold disappears before Tuesday!

ENT Update: In Which Spring Looks Very Busy

Nolan in front of our local ice castle

We headed up to the ENT yesterday to discuss Nolan's recent hearing loss, the obstructive apnea, the central apnea, and to inform her of his "staring spells," which may or may not be seizure activity. The appointment was at 3:30pm, but the ENT's office is frequently overburdened and we didn't get in to see the doctor until 5:00pm.

The general plan is:

Central Apnea:

The ENT will not treat or handle this, as it is a neurological issue. We already have a neurology appointment lined up for March 1, so the central apnea will be discussed there. In the interest of "getting the ball rolling," the ENT did order an MRI to be completed as soon as possible. Preferably before April 13, for reasons outlined in the obstructive apnea discussion.

She did reassure us that Nolan's arousal mechanism is working just fine, so he is not in any danger for the time being- as long as we don't give him any sedatives.

The ENT doesn't really know about the possibility of Arnold-Chiari (not her area of expertise), but an MRI will show if one has formed or if there is something more sinister going on. Hopefully, it will show absolutely nothing. Idiopathic central apnea sometimes resolves on its own, so we're definitely hoping for idiopathic here. Our insurance company is known for being particularly terrible about approving imaging studies, and Buffalo Children's has only 1 day per month for sedated MRI's, so getting the MRI done before April 13 seems dicey.

We will also be scheduling another sleep study, probably for sometime in May, to check on the status of his obstructive and central apneas (hopefully the obstructive will be completely resolved by then).

Obstructive Sleep Apnea:

Nolan's tonsils are not enlarged, but due to the findings of the sleep study and the chronic fluid-in-the-ears issue, the ENT wants to do a tonsillectomy, adenoidectomy, and place bilateral PE tubes again. She'll be placing Reuter-Bobbin tubes this time, as they have wider flanges and should be retained in his eardrums a little longer. The surgery is scheduled for April 13, and the ENT would like to have his MRI completed prior to the surgery.

Because Nolan has central apnea, things get a little complicated with the anesthesia. He will be placed in the pediatric ICU following his surgery, and be monitored there for 24 hours to ensure he doesn't stop breathing due to the anesthetic. He will be discharged with a prescription of tylenol with codeine for pain management, and we will have to ask the neurologist about the safety of the codeine with his central apnea. We do not currently have a pulse-ox meter with an alarm to monitor Nolan at night, though that may change after our consultation with the neurologist.

A follow-up sleep study will be scheduled about a month after surgery to verify the obstructive portion of Nolan's apnea has been resolved.

Ears:

Background: Nolan lost about 30dB in his high frequencies (his left ear went from a 50dB rising to 30dB loss to a flat 60dB loss). He does not have fluid in that ear, but did have a small perforation. His right ear had some negative pressure at the time of testing.

The ENT looked in Nolan's ears and noted the left ear looked fine, but the right ear is full of fluid. The current plan is to place bilateral PE tubes and repeat the hearing test. If the conductive component is still there, then we'll call it a permanent mixed loss and increase the amplification on his hearing aids.

The only negative is that the PE tubes won't be placed until April 13, so we will have to postpone his next booth test. He'll be under-amplified for a bit longer, which isn't ideal. In the scheme of things, however, breathing is more important than hearing. The neurology and MRI workup will take precedent over the hearing issues for the time being.

Staring Spells:

Again, this isn't under the ENT's jurisdiction, but we did inform her that Nolan has been having "staring spells" and had an EEG performed last Wednesday. The results are not in from the EEG yet, so she wrote the possible seizure activity into her notes. Once we find out if there are (or are not) seizures, we can more accurately document that in his file.

So, to recapitulate, our spring is going to be extremely busy. The schedule (as it now stands) is:

March 1: Neurology consultation
March/April TBD: sedated MRI
April 13: Tonsillectomy, adenoidectomy, and bilateral PE tubes set #3
May TBD: Follow-up sleep study
May 24: Follow-up ENT appointment