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.

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."

Lovely.

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?

In Which We Finally Get All the Medications

Nolan was prescribed Augmentin (a really common antibiotic) and Flonase compounded with Bactroban. Our ENT sent the prescriptions to Rite Aid, the pharmacy we've been using. They've been notoriously horrible at filling Nolan's prescriptions, and I keep forgetting to change pharmacies (he's only on Zantac now, so it hasn't been a pressing issue).

When we arrived home from the hospital, there was a message on our answering machine. Rite Aid called and said they don't have any Augmentin. They also couldn't compound the Flonase with Bactroban. They are extremely useless as a pharmacy. They called every Rite Aid store in town, and exactly none had Augmentin.

They finally found a store that had a short supply, so we traveled all the way down to the store on North Main Street to pick up the short supply. When we got there, we discovered we needed to have a label that had been printed out at the Rite Aid near our house to get the medicine. My husband asked when the antibiotic would be ready, and the pharmacy technician snottily retorted, "When will you have the label ready?"

Awake since 3:00 am, having gone through a long surgery day (that didn't turn into an actual surgery), we were not appreciative of the jerk behind the counter.

We returned to our main pharmacy and picked up the label. We returned to the Rite Aid across town. We got the miniscule amount of Augmentin and headed home. We were instructed to return to the pharmacy across town to get the rest of the medicine the following day.

Of course, when we returned, they didn't have the medication. They had sent it to our "regular" Rite Aid. We drove all the way across town and picked up the rest of Nolan's Augmentin. We also picked up the Flonase with Bactroban from Pharmacy Innovations, a wonderful little compounding pharmacy that was quite helpful and kind. Also, they had the medication we needed, which is always a plus when dealing with pharmacies.

In any case, Nolan is now on his Augmentin, Flonase/Bactroban (which he hates), and his regular Zantac.

He still has no signs of an airway infection. He does have a very rare, occasional cough. That is the only outward sign that has developed - nothing in proportion to the amount of pus in his airways. He also says that his right ear hurts (oh please, oh please, do not turn into an ear infection)!

Before he has another prescription filled, I need to switch pharmacies. I've been told that CVS and Wegman's are both fantastic. I am done with Rite Aid. It has been headache after headache with that store - and it would be nice to have a pharmacy that actually stocks common medications!

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!

ENT Appointment, Part 2: Revision Supraglottoplasty Scheduled

Nolan's g-tube and overnight feeds have done amazing things for him. He is now 41 pounds, 43" tall, and in the 37th percentile for weight. He no longer has growth failure, is stronger, healthier, and sturdier.

His C-Pap, however, offers variable performance for him. We sometimes hear stridor over the mask, which means the machine can't quite keep his oxygen consistently high. We reviewed the video from Nolan's sleep laryngoscopy, which shows the floppy tissue collapsing over his voice box.

Our ENT believes the first supraglottoplasty failed due to uncontrolled acid reflux. Now that Nolan has a fundoplication, the acid should be under control and a second supraglottoplasty has a higher chance of success. To maximize the chances for success, Nolan will be intubated and ventilated (while under sedation) in the Pediatric ICU for 48 hours.

Surgery has been scheduled for February 26th.

Next Tuesday.

There has been a whirlwind of activity since the appointment on Monday. We do not have local family, so we are extremely blessed to have amazing friends who will take care of Matthew while Nolan is in the hospital. I have called and booked a dog kennel for Casey. I have called the anesthesiology group to verify they participate with our insurance company (they do). I have taken care of the up-front deposit required for surgery, and moved a vet appointment and canceled Nolan's sleep neurologist appointment.

I am hopeful that Nolan will be released on Friday morning (March 1), but everything depends on how Nolan does after he is extubated and on room air.

If the surgery is successful, we can ditch the C-Pap. It would be really, really wonderful to ditch the C-Pap.

Nolan will have a follow-up (post-op) appointment on March 18, just 3 days before Matt's surgery.

Three PE Tubes and a Floppy Airway

We are home, thank goodness. Even though the placement of tubes is always a quick procedure, the day is still long. Nolan, of course, had to throw a few curve balls into the mix to create a slightly longer surgery than anticipated.

Firstly, he couldn't receive his overnight feed before surgery. He was as floppy as a rag-doll before surgery.

Then he started to retch and vomited some bile in the pre-op area. The child doesn't do well when he has to go for long stretches without food. Fortunately, they took him back to the OR at around 11:00am. An hour later, the ENT came to talk to me.

His right ear was infected and when the new tube was placed, the ENT could see that the fluid was still behind the eardrum. She made a second incision to try to suction the infected fluid out of the middle ear space, but the area behind his eardrum isn't communicating - for some reason, there are two separate sections of retained fluid. To solve the problem, she placed a second tube into his right ear. Now both sections are able to drain, and hopefully we'll achieve a dry ear. She also replaced the tube in his left ear. He is now sporting three tympanostomy tubes - I'm not sure how common that is, but at least his right ear will be able to heal from the chronic infection.

The sleep laryngoscopy showed severe laryngomalacia. His epiglottis was tacked up in the last operation, and it still looks good. The epiglottopexy worked and it no longer flops over his voice box/airway. The arytenoid folds, however, are large and floppy again, and completely occlude his airway. I got to watch a video, and they look just as bad as they did before his first supraglottoplasty.

We return to the ENT on November 26 to discuss our options. He will not outgrow the laryngomalacia, and we're not even sure if another surgery would work. The ENT has only had one other child who relapsed after a supraglottoplasty in the history of her career. There isn't a lot of history to predict what will happen if we attempt another surgery for Nolan's airway. Besides surgery, the other option is to keep him on mechanical ventilation at night for the rest of his life.

The ENT also wants to send us to another ENT, who is familiar with cochlear implants. With Nolan's right ear sitting at 75dB, she wants us to become familiar with the technology and at least say "hello" to the surgeon. His left ear is still well out of candidacy range, but tends to follow the right ear over the course of time. It is currently sitting at 60dB rising to 50dB, but if it drops then he will have two ears in the severe range.

We have a lot to research and consider before his follow-up appointment. In the meantime, I am going to take a nap. Or drink some coffee.

Sigh....

A Long Day, Part II

Remember when I posted a video of Nolan snoring, a while back? When we first suspected that he might be waking in the night because of obstructive sleep apnea? The video is here- go watch it; I'll wait.

He's pretty loud, and we don't hear it all the time. The tonsillectomy and adenoidectomy didn't fix it. The reason the T&A didn't work is:

Nolan is NOT snoring.

That is the sound of his airway collapsing, just above his larynx (voice box). He has inspirational stridor, caused by a floppy airway.

He has laryngomalacia. Pronounced La-Ring-O-Malacia.

For my friends who have infants with laryngomalacia, keep in mind that this is generally a very benign condition of infancy, most children outgrow it, and most children have no other associated issues with oxygenation, growth, or other problems (other than noisy breathing). Almost all babies outgrow the laryngomalacia by the time they are two years old, and never look back.

Nolan does not have the "mild" (though loud) infantile laryngomalacia. In fact, he never had noisy breathing as an infant at all (other than the "snoring").

His breathing is obstructed, causing oxygen desaturation at night. He has severe GERD and mild delayed gastric emptying. He's finally on the charts, but he isn't exactly growing at a marvelous rate- we'll be lucky if he finally gets out of a size 2T by the time he's four.

Because his growth and health is affected, his ENT is recommending a procedure called a supraglottoplasty, which will remove the floppy tissue and cure the laryngomalacia. This will probably cure the obstructive sleep apnea, might cure the GERD, and should set him on the path to better growth. It will also stop the long-term health effects of obstructive sleep apnea, which includes rather nasty things like heart failure.

The supraglottoplasty is not an easy procedure. Should we elect to go this route, Nolan will be kept in the Pediatric Intensive Care Unit (PICU) on full ventilatory support for two days. His airway will be swollen after the procedure, so they will have to breathe for him until the swelling goes down. He will probably have trouble swallowing for a week or so.

We don't have very many options. They used to do tracheotomies for children with severe laryngomalacia, but since the advent of the supraglottoplasty, tracheotomies are very rare due to this condition (thank goodness).

The other options are to leave the situation alone and monitor, though his obstructive apnea (and laryngomalacia) have only gotten worse over time. The long term consequences include cor pulmonale and growth failure. C-Pap won't work, because the floppy airway will not be "kept open" by the air pressure (instead, it would just be pushed against the larynx, blocking his airway). The nasal steroids the sleep neurologist recommended would have been absolutely useless- the obstruction is not in his nose.

There is a very good likelihood that we will be undergoing this procedure, though Nolan has to undergo another 24 hour pH probe while on his Nexium, to prove that his GERD is under control. Laryngomalacia can recur in children who have uncontrolled acid reflux, so our first step in this little journey will be to get that reflux under control.If the GERD isn't under control, then we will have to do something to control it before embarking on the supraglottoplasty.

It looks like we're in for another very medical winter. We will see the ENT again on November 15th, where we'll get to watch a video of Nolan's laryngomalacia and make some decisions regarding his treatment.

If everything goes according to plan, he will be free of his laryngomalacia, obstructive sleep apnea, and possibly even his GERD by Spring.

A Long Day, Part I

Hanging out on the 9th floor of Buffalo Children's Hospital is generally a tense time for Nolan, especially now that he's getting older and understands what admission to the 9th floor means. He refused to stand on the scale to get his weight, so we had to get his weight while he was sitting and pouting on the scale. He refused to stand to take his height, so we sort of propped him up against the wall and got a close approximation (he's 28 pounds and 36.5 inches tall, for anyone that is interested).

We were very fortunate to be in the waiting area when a clown came in to entertain the children. We've never been on the same-day surgery unit when the "entertainment volunteers" were there. This took a great deal of stress off Nolan, and he really enjoyed interacting with the clown. He did a magic trick or two with her, and was able to keep the little police car from the magic trick. It is amazing how 10 minutes of fun makes the day so much more bearable.

Things actually moved rather quickly, and we were taken back to the surgical waiting area. Nolan refused to remove his shoes, so we left them on. I did have to take his hearing aids away just before he went into the OR, and he went ballistic. He equates the removing of his hearing aids with painful medical procedures, and screamed to keep them on. It was really tough handing him over to the nurse this time- it gets harder as he gets older and is aware of what is happening.

They used as little sedation as they could get away with, due to his central apnea. This is good, because it preserves his breathing. Unfortunately, it also means that he isn't as knocked out as a typical child would be, so his anxiety level is fairly high before and immediately after the procedure.

After the procedure, the ENT came to talk with me about what she found. His ears actually looked pretty good- the fluid we had seen a week ago had cleared up. She proceeded with the tube insertion since clear ears are a rarity for Nolan. I received Nolan's Floxin drops and pamphlet on the long-term care of PE tubes. Since this is his fourth set of tubes, we're old pros at taking care of them.

She then whipped out some pictures and talked to me about Nolan's laryngoscopy/bronchoscopy results. We have some answers, for at least one or two of his current issues. I'll save the details for Part II, but Nolan is going to have at least one or two more procedures in the near future. This finding could explain why he has such severe gastro-esophageal reflux disease, obstructive apnea, and poor weight gain/slowed height development.

I had a lot to digest, and went to comfort Nolan in the recovery room. He was beyond angry, screaming in his post-anesthesia rage. Once we got the all-clear to remove his I.V. and we were able to take him to the 9th floor recovery area, he was starting to calm down. I put his hearing aids back in, we gave him a Popsicle, and we let him watch Wow Wow Wubbzy on the hospital television. We were released at 2:00pm, and Nolan was quite happy to get buckled into his car seat for the ride home. When I pulled his earmolds out that night, they were coated with blood- the first time we've seen that side effect from tubes.

He is absolutely fine today, though he still hates the ear drops required after tubes are placed. His ears are clear and he's playing quite happily. We will return to the ENT on November 15 for our follow-up visit, so we will have a little break from the medical whirlwind. Goodness knows, we need it!

MIA

Sorry about the lack of posts, but the weather has been absolutely stunning here lately. After three weeks of solid rain, we had warm temperatures and crystal clear skies. We've been outside playing, visiting farms, and collecting leaves. The boys absolutely loved visiting our local Port Farms, to play in the corn box. I'm just grateful we didn't lose a hearing aid in all of that corn!

We are gearing up for Nolan's bronchoscopy and fourth set of tubes tomorrow. He knows he has to go to the hospital tomorrow to "fix his ear," though he insists his ear is Not Sick. His nose has been running off and on, so the chances of fluid behind his eardrum are pretty good (especially since he had fluid when we saw the ENT a couple of weeks ago).

Hopefully the bronchoscopy will shed some light on why Nolan has such severe obstructive sleep apnea, so we can address the problem with the right solution.

Even though we've done this particular surgical dog-and-pony show before, I'll be glad when it is over and we can get back to "regular life." Going through the preparation and waiting on the 9th floor of Buffalo Children's is extremely anxiety provoking for Nolan, so keep us in your thoughts tomorrow! Hopefully this will be the last procedure for a long, long time.

ENT Visit

Wiped out from running

I am not quite sure how to fit the events of yesterday's ENT appointment into one post (it should really be three separate posts), but I am going to try.

The Never Ending Ear Infection

The "gunk" in Nolan's ear was not a sign of active infection. The ENT took a look and noted the material was definitely occluding the ear canal, but the eardrum and ear canal skin looked great. There did appear to be a large perforation behind the tube. She took him back to the Big Ear Sucker of Doom and removed the gunk. She also looked at the eardrum under the microscope, and noted the tympanostomy tube was actually lying on top of the eardrum. She removed it, and the "perforation" disappeared- it was just an optical illusion cast by the shadow of the displaced tube.

I was so greatly relieved by the news of the finally-resolved infection, that I didn't notice her grabbing the pneumatic otoscope. She made a "hmmph" sound and I looked up. She looked at me and said, "Fluid."

Rats.

So the never-ending-ear-infection is gone, but a new one is starting. The left tube is starting to extrude from the other ear as well. These were intermediate-length tubes, so they should have lasted for at least a year. They lasted for about 4 months.

Surgery is scheduled for October 12 to place a fourth set of PE tubes. This time, they'll be "long-term" tubes- I suspect they will be placing "T-tubes" into his ears on this occasion. The negative of T-tubes is that they must be surgically removed. The benefit is that they will not fall out in another 3 months, so we should be able to go for a longer period of time between surgeries.

The Random Hearing Test Results

Obviously, we need to figure out what Nolan's hearing levels truly are, and why his hearing levels fluctuate so much. We also need to determine the exact type of hearing loss for each frequency. Since we have three different bone conduction results from two different sites, we are going to have a full hearing test run at Buffalo Children's (WCHOB) sometime after his fourth set of tubes is placed. This test will be used as a "referee" for all of the other tests. Unless, of course, we get a fourth result. Anyone want to take some bets?

The Whole Apnea Thing

We're quite thrilled that the central apnea has all but disappeared. Unfortunately, the obstructive apnea has only gotten worse with time, and the ENT is not pleased. The neurologist labeled the obstructive apnea as "moderate," but the ENT heartily disagrees. It is quite severe, but she believes the neurologist downgraded her reading because she doesn't want to put a C-Pap mask on a child with a recessed mid-face (the pressure of the mask would only cause more mid-face retraction as his skull grew).

While the neurologist wanted to try a few steroids to see if they would help with the apnea, the ENT was appalled at this idea. Those drugs are only used for very mild obstructive apnea- and they're only used for apnea caused by congestion. Nolan's apneas are completely unrelated to congestion (for that matter, so are his chronic ear infections).

To determine the best course of action, the ENT wants to find out why Nolan has such severe obstructive apnea. Since he's going to be sedated for the tubes on October 12 anyway, she is going to perform a flexible bronchoscopy while he's out. A scope will be passed through his airway and into his lungs to find the level of obstruction. We should find out the results on the day of the procedure, so we will have more guidance on how to treat the remaining obstructive apnea.

We are going to have a busy October, but at least we'll have a bit more information on Nolan's hearing and breathing issues!