Sunday, October 21, 2012

Fungal Middle Ear Infection... Again

Honestly, we can't win for losing sometimes! Poor Nolan's cultures came back on Friday evening, and the culture showed bacterial and fungal growth. A mold is growing in his middle ear space, so he will have to start anti-fungal drops. Our ENT called the prescription in to the local pharmacy, but the local pharmacy had no idea why Lotrimin would be prescribed for the ear.

We have been through this before, back in August of 2010. Fortunately, I haven't switched pharmacies so the pharmacist was able to look up Nolan's old record. She wasn't sure if it had to be compounded or was readily available. It is a 1% solution for topical application, and she was able to find the information in their database. She still has to call the ENT on Monday to verify the concentration, since the prescription didn't state the exact percentage.

In the meantime, the Ciprodex drops are excruciatingly painful. So painful that I don't know if we can continue with them. I have to call the ENT's office on Monday morning (the PA on the emergency line will simply tell me to continue with them, and they have no idea of the level of pain I am describing). He is in agony for 2 hours or so.

I think this is partly due to the fungal infection, and mostly due to the steroid and liquid irritating and extremely inflamed middle ear. I need to find out if there are numbing drops we can give to ameliorate the pain.

In any case, the last time he had a fungal middle ear infection, it led to an 8 week long infection that was very difficult to cure, and then he needed new tubes at the end of it.

I hope we get the Lotrimin suspension on Monday and can get rid of this infection as quickly as possible. The pain and the frustration with fungal infections are just horrible.

Friday, October 19, 2012

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.


Thursday, October 18, 2012

Surgery Scheduled Tomorrow

Nolan had his ENT appointment on Monday. He has had an upper respiratory infection for a while, and his chronic sinus issues and unrelenting ear infection meant we had a bit to talk about.

His ENT looked into his ear and it was filled with thick fluid - this meant he needed a trip to the dreaded treatment room with its papoose board. This is never a pleasant experience, and I hate doing it. Nolan screamed, "Mommy, save me!" the entire time he was strapped down, and without his hearing aids he can't hear me (he can't see me, either, since he is sandwiched between the nurse and ENT).

In any case, we found out that he has a granuloma on his right tube, which is the cause of the infection. Granulation tissue often forms around tubes that penetrate any part of the body - eardrums included. The granuloma has to be removed, so he'll have his tubes removed on Friday. New tubes will be placed - this time they'll be "U-tubes."

We also discussed his stridor, which was never successfully treated via his previous surgeries. His ENT wants to take a look to see why the apnea and stridor are continuing, so they'll do a bronchoscopy and microlaryngoscopy while he's out for the ear tubes. For those who haven't had a bronch, this procedure is basically looking down his airway with a camera to see where the obstruction is coming from. He has laryngomalacia, and it is likely that his first surgery didn't fix the problem. I doubt we'll sign up for more surgeries - the little guy has been through many surgeries and none of them have really helped him. I doubt a second attempt will have long term success at fixing the stridor.

His ENT was very upset that he is receiving overnight feeds. She wants to put him on a drug called Reglan to see if that will help. I am not on board with that idea. The thing is, the overnight feeds are working. The Reglan may or may not work, and this drug has a black-box warning from the FDA. It crosses the blood-brain barrier and has caused tics, movement disorders, and other neurological issues - the longer you take the drug, the higher the risk. Since Nolan's digestive issues don't seem to be a short-term issue, I cannot allow my child to take this drug. Especially since less risky options (i.e. the overnight feeds) are extremely successful and won't cause brain damage.

She was rather upset that I don't want to use the drug. She started to go into a monologue about how the overnight feeds are being refluxed and causing sinusitis, which means she'll have to do a sinus CT scan and sinus surgery.

My ridiculous meter went off: firstly, he has a Nissen fundoplication. We recently had it tested with an upper-GI barium study and it is intact, with no reflux evident (even when flipped upside down). We know he isn't refluxing.

Secondly, this child has had chronic sinus and ear infection issues since... FOREVER. She has forgotten that he has already had a sinus CT scan - a year ago. First she blamed the sinus issues on reflux. Then on the C-Pap machine. Now she's blaming them on the overnight feeds.

I felt quite bullied into trying the Reglan. She actually laughed at my concern, astonished that I wouldn't give my child this drug. I went home after the appointment and did some more research, including asking around on forums of parents who have children with motility problems. Guess what? Many of the parents had to stop using Reglan for head bobbing, tics, lip smacking, and aggressive behavior.

There are other options for treating motility issues, and I would rather try a safer drug if we go the pharmaceutical route at all. Really, I'd rather avoid the drugs altogether and see what happens with some time once we get his weight stabilized.

In any case, we'll be driving up to Williamsville, NY at 6:00am tomorrow morning. Hopefully he'll be in-and-out, and we should be home by the early afternoon.

Tuesday, October 9, 2012

Hearing Test

Nolan had a hearing test yesterday. The audiologist called and bumped the test up to 1:00pm, which was fine by me: our original time was 4:00pm and we have a 2 hour drive each way. I like getting home before nightfall.

There was no assistant available for the test, so our audiologist told me to wait outside with Matthew while she took Nolan into the booth. He did the test on his own, and raised his hand for the tones. This is the first time he has done "adult" type testing, rather than play audiometry.

The testing went very quickly - it only took about 20 minutes and he was done. His left ear has actually fluctuated up a bit, and is more of a moderate loss rather than moderately severe. This always makes me anxious as to the accuracy of the test, since that ear has been sitting at 65dB for the past two years. Still, it is what it is - I think the audiologist turned down the volume of that hearing aid to match the day's test result. I'm not exactly sure, though.

The right ear looks like it did in July, with that drop down to 70dB in the high frequencies. He's sporting a 75dB loss across the rest of the lower frequencies, though the additional loss is probably due to his active ear infection. He's normally 65dB dropping to 70dB.

Unaided speech recognition was 80% at 100dB for the right ear and 96% at 80dB for the left ear.  I'll post his audiogram when we get it in the mail.

Since both boys were very good during the hearing test, I took them to Chuck E. Cheese after the hearing test. I had a coupon for 100 tokens for $20, and the boys were in heaven.

Nolan's right hearing aid won't be worn for a while. The ear is still leaking (despite antibiotics), so hopefully it will dry up soon. He has an appointment with his ENT on Monday the 15th, so we'll see what she thinks about the continuing ear infections. He's been averaging an ear infection every-other month, always in that right ear.

Friday, October 5, 2012


Nolan started coughing last night, and it had that particular hacking characteristic that makes parents reach for a thermometer. As soon as I touched his forehead, I knew he was not well. He had a 103F fever, so I gave him some Motrin with his feed last night.

In the morning, he was still running a temp. I took Matt to school and called the pediatrician. Both whooping cough and the flu are going around at the moment. I was pretty sure it wasn't whooping cough, but it could definitely be influenza.

I was really bummed, as we had our annual Enchanted Forest event planned. This event is at our local Audubon Society, and the naturalists dress up as local animals and tell the kids about the animal they represent. It is extremely fun and educational, and I highly doubted we would be going this year.

The pediatrician immediately thought influenza. The cough, the high fever, the congestion and headaches.

All of the tests they ran (from influenza to strep) came back negative. Then they looked in his ears - he has a raging ear infection in the right ear, which is probably the source of the fever. His cough sounds awful, but he has a floppy airway: even a typical cough will sound like croup (or worse) with his malacia.

The final verdict was that he has a nasty ear infection coupled with a cold. Of course, he is much sicker than a typical child with a cold, but that is because of his pre-existing airway and sinus/ear problems. He wasn't really sick - just "Nolan Sick."

We could carry on with our normal activities, as he's not really contagious. A regular cold just causes him a lot more problems than it would for a typical child. We left with a script for Augmentin for his sinuses and ear infection, and we'll give him Ciprodex drops to clear up that ear, too.

We spent the next hour (yes, HOUR) in Rite Aid, waiting for the prescription to be filled. To prevent the kids from checking their blood pressure for the fortieth time, we went "shopping" in the seasonal aisles. There were really cute animal hats on sale for $8, and Matt really wanted one. He picked up a wolf hat and said, "Its name is Snowy. I named it. We can't leave it here!" I bought the hats. I'm a sucker.

Considering they played with the hats for a solid three hours tonight, I'm considering the hats a huge WIN.

With a little more Motrin under his belt, he was feeling pretty well this evening. We made it to the enchanted forest.

I'm glad my little guy doesn't have a really nasty virus - though I hope this ear infection clears before his hearing test on Monday!

Thursday, October 4, 2012

Time Flies

I can't believe how fast time flies in October. There are so many fun things to do, and the weather is usually pretty decent. I feel like we blink and then November arrives with all its gray glory.

Nolan is doing extremely well. We have the nighttime feeds down to a science, though we have still had a few rough nights with Nolan waking frequently. He slept through the night last night (with the exception of falling out of bed once), which was a relief. His dimples are definitely making a return - you can see one in the picture above. I love it.

He hasn't been eating very well at all. He's been sick - just a cold - but with Nolan, a cold means that he can't hear and that he won't eat. At all. It makes for a grumpy boy. He went to school with no breakfast again this morning, and he's only been eating his orange and go-gurt at lunch. He ate nothing for dinner last night. I wish the cold would hurry up and go away, though colds linger with Nolan... it could be a month or more until this one disappears.

He has a hearing test on Monday, so hopefully the congestion will clear out before the test. He has tubes in his ears, so that helps immensely. I don't want any questions as to the reason behind any mysterious drops in hearing ability. Nolan has complained that his right ear isn't working, which is concerning. This is the ear that recently took a 20dB dive in the high frequencies, so we'll see what's happening there.

We have an October packed with activities:

October 5th: Enchanted Forest at the Audubon.
October 6th: Big birthday party celebration with a friend.
October 7th: Port Farms/pumpkin patch visit.
October 8th: Hearing test.
October 15th: ENT appointment.
October 25th: Travel to Washington, D.C.
October 28th: Dennis runs the Marine Corps Marathon.
October 29th: Drive home from D.C.
October 31st: Halloween parties at school and trick-or-treating.

The kids are extremely excited about all of the festivities and the upcoming travel. They are going to love riding the metro in D.C. and seeing the Smithsonians. Matt is particularly excited about the Air and Space Museum. Nolan just wants to ride the "underground train."

Here's to a fun October!