Ear Drops of Doom

Hiking in Chautauqua Gorge

I managed to get Nolan into the pediatrician on Friday evening, and his right ear is definitely infected. The nurse practitioner also weighed him and he's down to 30.5 pounds (he had been at a hefty 32 pounds a few months ago). They prescribed Ofloxacin (antibiotic) ear drops, and we went on our merry way.

I dread ear infections. The pain of the infection never seems to bother Nolan much. We don't even know he has an infection until we see blood and "goop" pouring out of his ear. The most horrible part of his ear infections is the treatment: the dreaded ear drops.

I know, I know. Ear drops don't sound all that bad. Especially compared to the other things Nolan has been through. For Nolan, however, ear drops are equated to some form of medieval torture. We have to pin him down when we add them to his ear, then rock him as he screams for the next 20 minutes. The medication hurts when it goes through the tube into the middle ear. Then there is the dripping feeling of the medication sliding back out of the ear, which Nolan cannot stand.

The good news is that his T-tubes are still firmly ensconced in his eardrum. With the standard ventilation tubes, this infection would have pushed the tube out and we would have been headed back into surgery to replace a tube. The T-tubes are much sturdier, and have withstood the infection process.

We only have to do the drops for seven days, so hopefully the time will pass quickly. Also, I hope we don't get a repeat of last year's eight-week-long ear infection drama.

Our August is currently (mostly) doctor-free. I would really like to keep it that way.

Dancing with Insurance Again

The sleep neurologist's office called to let me know that the CPap information had been sent to the Home Healthcare Company (HHC). I gave the HHC a call to determine what we needed to do next (if anything): apparently, we just have to sit tight and see if our insurance company will pay for a CPap machine. The insurance company will likely require an authorization, then they'll decide if they will chip in for the machine or not. You know, because breathing is totally a "lifestyle choice."*

Like hearing aids (and many other "durable medical equipment"), CPap machines are often not covered. Fortunately, we'll "only" be out about $1,000 if our insurance company refuses to pay for the machine. We'll see what happens.

In the meantime, Nolan is sporting his first ear infection since getting T-Tubes. He brought me a clogged hearing aid and a leaky ear: it isn't pretty, folks. He has gone nearly 8 months without an infection, which is pretty record-setting in our world. Hopefully a round of Ciprodex drops will clear this one up (oh, the joys)!

*Hearing aids are often not covered because wearing them is considered a "lifestyle choice" among adults. Unfortunately, children learning to listen and speak are adversely affected by the refusal of insurance companies to cover hearing instruments.

Two Ears Again

Nolan last week, when he was missing a hearing aid.

Today was a little busy: Vacation Bible School followed by a trip to Nolan's audiologist in Buffalo. A wonderful friend volunteered to take Matt on a little "field trip" to a local swimming pool with her kids while Nolan and I traipsed up to the hearing center. This was a wonderful turn of events: Matt didn't have to suffer through another four hours in the car, and I only had one child to attend to on the trip. Some friends are simply awesome!

We got his hearing aid back, and the report does show that there was some moisture damage. It is now repaired, and we have a warranty for 12 months on the aid. That is $250 well spent: much cheaper than purchasing a new hearing aid.

Of course, there was a bit of drama on the way home. Nolan ripped out the recently repaired hearing aid and declared that it was dead. I reached back for it, and sure enough, there was not a squeal of feedback to be heard. I turned it on and off a few times to no avail. I checked the filter on top of the microphone, taking it off and replacing it. No luck. I couldn't believe it!

I tried taking off the earmold, and the hearing aid squealed to life. To my great relief, Nolan's right ear had simply developed an impressive amount of hearing aid clogging wax. A simple solution, thank goodness, and something we'll have to check for since that ear has been unfettered by an earmold for about a month.

We won't have to see audiology until January or so, when Nolan will have another hearing test done. He's still on an every-six-month schedule since his hearing loss has fluctuated and changed over time (albeit at a very slow pace). Hopefully he'll be stable and we can move onto an every-twelve-months schedule.

C-Pap Titration

Nolan and I headed up to Buffalo Children's last night for his fourth sleep study: this time a C-Pap (Continuous Positive Airway Pressure) machine would be titrated during the study.

Our favorite sleep study technician was only in for the evening, so another technician did most of Nolan's hook-up and study. Still, the respiratory therapist extraordinaire prepared several "prizes" for Nolan's departure the following morning, and set him up with some fabulous Lightning McQueen sleeping accessories.


The hook-up started shortly thereafter. The amount of wires that is involved is pretty impressive: a partial EEG array, 2 EKG leads, 4 leads on the legs to detect movement, leads on the chin and near the eyes to detect an open mouth and eye movement.



Nolan was absolutely brilliant during the hook-up of the leads. This is his fourth time, and he has an experience book that helps him understand what will happen.



The nasal cannula always makes him cry for a moment. He really hates any "tubie" up his nose, but he recovered fairly quickly from that part of the procedure.



Unfortunately, the mask to the C-Pap would prove more difficult for him. He started sobbing when they placed the mask over his nose, even with no air flowing. Once they started the air flow (at the minimum pressure of "3"), he absolutely flipped out. Fortunately, the respiratory therapist had a brilliant idea and snagged a mask for me: I was able to wear the mask and help Nolan through the process of getting it on. We even hooked up the air to my mask, so that Nolan could see that it didn't hurt and wasn't really scary at all.

This worked for a little while, anyway. The airflow does feel strange, and along with the feeling of the mask, was a bit much for an almost-four-year-old boy. There was a bit of crying and a lot of fitful sleep in the early evening.

They titrate the C-Pap machine by increasing the air pressure until the apneas and hypopneas disappear. Because the respiratory therapist cannot give me any information, I have no idea what Nolan's final pressure was. I do know the air was blowing quite a bit more forcefully by the end of the study.

The little guy barely slept at all until 4:00am. We had to replace his nasal cannula twice, which required removing the C-Pap mask and then reattaching everything. At some point, I realized he had wet the bed, which required removing and reattaching the leg leads as I changed him (note to self: future studies will be done in a Pull-Up).

He was mighty glad to get everything off in the morning, and we headed home with his trademark goopy head and "powers." I should get a call from the Home Healthcare Company (HHC) within the next week or so: they will arrange a meeting to pick up his machine and masks. I'll find out the pressure level settings at that point, since the machine will have to be set and ramped up to the correct pressure.

I have my fingers crossed and prayers said that the C-Pap will work to stop the apnea!

Information from the Cleveland Clinic

The Cleveland Clinic sent off an information packet very quickly: I received it in the mail at the end of last week. It includes a map and a timeline of our appointment on September 6 (we meet with the genetic counselor first, then with the geneticist). They also included a fax number for Nolan's medical records - I talked to our pediatrician's office and they will probably send them on Saturday. Nolan's medical records are so extensive it will tie up the fax machine for a long time, so they don't want to do it during business hours.

Since our insurance only approved a solitary appointment with the geneticist at the Cleveland Clinic, further visits (and/or any tests) would have to be approved separately. I spend a significant amount of time battling our insurance company - I have a feeling that is not likely to change any time soon. I suppose we'll cross that bridge when we come to it.

We don't have much else going on, other than Nolan's C-Pap titration on the 21st of July. He's had a lot of tummy issues (reflux and some lower GI issues) lately, so hopefully those will settle a bit before the sleep study next week.

July 2011 Audiogram

Sailing was a success - we went out on the lake and had a great time. Nolan's hearing aids stayed at home, but he did fairly well on the boat. We explained that he had to sit tight on the boat (we don't have a motor, so we use the sail as our sole means of power). If you have never sailed, it requires a bit of activity when tacking (going back and forth) - the occupants have to switch sides so that the person in control of the main sheet can control the sail. Fortunately, neither boy weighs enough to affect the balance of the boat - they were able to sit tight while Dennis and I darted back and forth across the boat. The wind did die down, unfortunately, which meant we had to drop sail and row back to the dock (the lake looked like a sheet of glass - never a good thing in a sail boat)!

I did get Nolan's most recent audiogram in the mail. His bone conduction is still slightly better than his air conduction, but there is no chance that his loss is conductive. His best bone conduction scores were at 40dB at 500Hz (this means the sensorineural portion of his loss is moderate). His actual hearing level is moderate severe, with his hearing at 55-65dB in all frequencies.

His (unaided) speech detection thresholds are 45dB for the right ear, and 50dB for the left ear (this is the level that he can detect speech is present).

They also performed a word recognition task: Nolan was able to identify 88% of the words in his right ear when the speech was presented at 85dB volume. He was able to identify 92% of words in his left ear when the speech was presented at 90dB volume. This testing is done using Nu-CHIPS, a word recognition hearing test designed for preschoolers. Basically, about 40dB of volume is added to the child's speech awareness thresholds, and words are presented at that level.

Nolan's word recognition is pretty good at the 85-90dB presentation level. Remember, of course, that 85-90dB is MUCH louder than typical conversation: he can't even detect speech is present at normal conversational volumes. Essentially, he can understand words without his aids when you bellow at him. That residual hearing is useful for sailing and other water sports, however, when he doesn't have his aids in!

His audiogram looks identical to the one in June. He can't hear the sounds above the line (unaided), he can hear everything below the line. Both ears are identical in hearing level.

New Language This Weekend

Tack

Jibe
Batten
Jib
Block
Sheet
Boom
Clew
Coaming
Shrouds

Sail

Now that the kids are old enough to follow directions, we're taking the boat out again. Nolan is bound to learn a lot of new language (we're still hunting for a batten)!

Upper GI Results

After playing a bit of phone tag, I finally got the results to Nolan's Upper GI Barium study. As expected, his anatomy is entirely normal. Since barium studies are not intended to diagnose or evaluate reflux (scintiscans and pH probes are far better, and only a pH probe can diagnose the severity of an acid reflux disorder), we didn't expect to see any reflux on the X-rays. Nolan's first upper GI barium study was entirely normal, but they did manage to catch a reflux event during the most recent test.

After talking to the nurse practitioner with our ENT clinic, I found that they do Upper GI studies routinely prior to fundoplications. The pediatric surgeon needs to verify normal anatomy (or abnormal anatomy) prior to embarking upon the procedure. In addition, certain conditions (like hiatal hernias) are repaired via a fundoplication.

If (and that is a big IF) we decided to proceed with a fundoplication, the first studies are completed: we won't have to go through all these tests once we visit the pediatric surgeon (if we didn't do them now, we would have to visit the surgeon, then do the tests, and then return to the surgeon again).

In the meantime, Nolan is coughing and gagging a lot - his blasted reflux seems to get consistently worse rather than better. We can hear his stridor increasing, and he complains about getting "throw-up" in his mouth. Reflux can flair up randomly, so I'm hopeful that this recent flair will dissipate soon. Ugh.

The First Black Eye

Soccer Ball + Glasses = Ouch.

Appointment Made for the Cleveland Clinic

Pure summer fun.

I called the financial services department at the Cleveland Clinic to inform them we had received a letter of approval from our insurance company. The financial services person had to call the insurance company to verify the authorization, so I hung up and figured it would take a week or so to get a call back to schedule an appointment.

Holy Guacamole, the Cleveland Clinic is fast. Within half an hour, the phone was ringing and the genetics department was on the line. They're scheduling into September now, so Nolan's appointment will be on September 6.

Apparently, the Cleveland Clinic is approximately the size of a small continent - they are sending an information packet and map system so that we can find our way through the campus (there are over 20 buildings on the main campus). They're also sending fax information and history forms, so that Nolan's pediatrician can fax the relevant information to the geneticist.

That's one major item crossed off the "to-do" list, and I am very pleased that we snagged our second-opinion appointment prior to the follow-up with the ENT in late September (when we will revisit the idea of a fundoplication referral).

Hearing Test, Redux

Nolan and Casey the Snuggle Puppy

Nolan had a confirmatory hearing test today. His results look identical to the test last month, so his audiologist increased the amplification in his aids to suit the new audiogram. This is actually a bit overdue, since we saw those high frequencies drop off in the left ear last November - but that test was performed at Buffalo Children's, and they can't adjust hearing aids. Nolan's own audiologist hadn't seen that drop before, so she wanted to confirm before increasing the amplification.

Nolan's right hearing aid, which had been totally dead, sprang to life as soon as we pulled into the audiologist's parking lot. It is a lot like taking a car to the mechanic, and having it sound perfectly normal as soon as the professional looks it over. We still sent it in for repairs, since it is eating through a battery per day (he normally only goes through one per week). We'll go back in two weeks to pick it up - hopefully we won't have any more problems with it!

After the hearing test, we took a side trip to Buffalo Children's hospital to see if Matthew had left his hand-held video game in radiology during Nolan's Upper GI scan. Sure enough, it was sitting behind the radiology desk. I was so glad it was there! I think I am going to start labeling all of the "travel" toys - it is not-so-fun to run up to Buffalo when something expensive gets left behind!

We're all tired after the Independence Day weekend, which we spent with friends. The boys swam in a pond, played in a pool, roasted marshmallows, played with sparklers, and watched fireworks. After all the fun activities, we're ready for a few quiet days at home. Fortunately, Nolan's C-Pap titration was rescheduled for the 21st of July, so we have an entire week of relaxation ahead of us.

Approved

The relief I feel is enormous. I just received word that a visit to see Dr. M at the Cleveland Clinic has been approved. Our insurance company will not cover any tests or procedures there, but they will allow us to get a second opinion with a geneticist.

I'll call on Tuesday to make an appointment. We should get in by mid August to early September.

I am so thankful to get the second opinion - we really need reassurance and advice before we think about doing any more surgeries.

Now I can relax and get back to worrying about the dead hearing aid!