Why I Have Gray Hair

Nolan has been having difficulty hearing again. It is no surprise that he is congested - his ears seemed fine for most of last week, thank goodness, but he was constantly poking at his right ear yesterday. This is generally not a good sign.

Last night, he told me that he couldn't hear at all in his right ear. I took a look with the otoscope, and was rather freaked out by what I saw. A thin, white triangle jutted out of yellow fluid and wax. I wasn't sure what I was seeing. I couldn't see his tubes in that ear (this is the ear with two tympanostomy tubes). I thought his eardrum might have perforated and that I was possibly seeing middle ear bones. I had a silent panic attack and was going to take him into the pediatrician on Monday, to confirm what I was seeing.

This morning, I decided to take another look. There was something lying in his ear canal, and I pulled it out. It was a glob of earwax embedded around one of those plastic tags that holds the price tag onto new clothes. It was bent over, and was apparently used by Nolan as a way to scratch an itch in his ear.

Thankfully, it didn't puncture his eardrum and came out on its own. His eardrum was behind the mass of plastic tag/earwax and looks just fine (both tubes in place, one metal and one plastic U-tube).

Of course, the big We Never Put Things in Our Ears lecture was repeated. Hopefully he'll never try a trick like that again.

I am a little concerned that an infection is brewing in that ear, a scant four weeks after surgery. It is itchy, and he isn't hearing well out of it. He's congested and putting his hearing aid in is a little painful. I'm going to watch and wait, and hopefully it will dry out and the cold will disappear. We have PE Tubes #5 and #6 sitting in that ear, and I am truly hopeful that they will last a long (long, long) time.

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....

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.

Another Blasted Ear Infection

I have nearly completed another week's food diary. I took Nolan in to be weighed on Friday, and he was bouncing all over the scale. The scale clocked in at 34 pounds, which places him in the 7th percentile on the pediatrician's scale. He is below the 3rd percentile on the surgeon's scale. I'm not really confident about the weight at the pediatrician's office, though, because he was bouncing and they didn't re-check it to verify. And their scale runs consistently heavier than the other two scales (at our ENT and the surgeon's office). The whole food-and-weight issue is very stressful - I'll feel better once I have input from our surgeon and the nutrition department in Rochester.

On the other hand, our "give him any food he wants every hour" might be working to put on weight. It isn't nutritionally sound, but might keep him out of the failure-to-thrive category. I'm still waiting on word from our surgeon. The phone rang on Friday morning with a Rochester area code, but the answering machine had picked it up and the caller hung up when I answered. This was highly frustrating, as I think it might have been our surgeon trying to call.

In the meantime, Nolan has been enjoying his swimming lessons and has had a wonderful time showing off his fearlessness.

On Friday afternoon, he kept putting his finger in his right ear and complaining that it wasn't working. This meant one of two things: either that ear has finally gone kaput and dropped a significant amount of hearing...or he was in the throes of another infection.

On Saturday morning, we were running out of the house to a 9:00am soccer game, and I saw the drainage as I went to put his right hearing aid in. Beautiful. Ear infection number 2 since the fundoplication. At least there isn't a sinus infection with this one!

The pediatrician has Saturday hours, so I called and made an appointment for 10:00am. Our Saturday schedule went: soccer, pediatrician appointment, soccer. Nolan is on Amoxicillin and Ciprodex ear drops again. We can't tell if his tube is still in place, because there was too much pus to see his eardrum. Nolan hates the antibiotics, so we're putting the Amoxicillin through his g-tube.

We are leaving for California in a week, so I really hope the ear infection is gone before we fly!

Frustrated With Ear Infections

He's smiling, but in pain. He's had a nasty nose for over a month. And now he's refusing to wear the hearing aid in his right ear.

He has another ear infection coming on.

I'm more upset about this than I would be if an ear infection was just an ear infection - but for Nolan, ear infections mean reflux. I think the fundoplication might not be working.

I'm more frustrated than I can possibly express - I don't see fluid leaking out of his ears yet, so I'm watching and waiting. We'll probably be at the pediatrician's office tomorrow, and since Whooping Cough is going around in our area, this doesn't make me happy.

I suppose we'll see what the ear looks like tomorrow.

ARGH!

Ear Drops and Flu Shot Drama

'Tis the season.. for germs.

Our trip to the doctor went well yesterday. His left ear is definitely infected, so we decided to go with Ciprodex drops to see if they would work to cure the infection. The good news is that the left tube is still in place - while it had been clogged, the infection pushed its way through the clog and he still has a functional tube. Usually, an ear infection with a clogged tube just perforates the eardrum and wreaks havoc on his ear!

While we were there, he also got a flu shot. He was not very happy about that decision - he screamed bloody murder. On our way out of the building, he yelled at each person in the pediatrician's office: "I don't want a SHOT!" I had to stop by Rite Aid to pick up the ear drops, and  he really hammed it up - he couldn't walk, he claimed, and he hopped on one leg. I would have believed him, but he kept forgetting which leg had gotten the shot, so he alternated the leg he was hopping on. Still, he let everyone know that he was the Boy Who Had Been Maimed By the Flu Shot.

Nolan has been going without hearing aids because of the infection (the right ear looked a little "wet," so we have been leaving that one out as well). It has been a wee bit difficult without the aids. Like an idiot, I decided to take the boys to the mall to exchange something, and Nolan was rather obnoxious.He ran around the mall and communication was extremely difficult. We do use some "survival sign language" with him, but my hands were filled with bags and I couldn't even sign to him to stop running around like a maniac. Any four year old might go crazy in a crowded Bath and Body Works shop, but it is especially frustrating when communication is limited. We ended up abandoning the trip and heading home. His right ear is looking fairly decent this morning, so I will probably put that aid back in today and hope for the best, infection wise. Those earmolds trap moisture and really exacerbate infection issues for Nolan!

I threw both boys into the bath last night and let them play with their toys - a few minutes later, I hear horrendous screams coming from the tub. They had been playing Lion King, and Nolan squirted half a bottle of shampoo into Matthew's eyes (in the movie, Scar the lion throws embers into Simba's eyes). Poor Matthew was in pain, and I finally got him sorted and feeling better. Nolan knew he was in trouble, so he threw himself to the floor and started flailing around yelling, "Oh, the shot made me do it! The shot made me do it!"

Nice try, kid.

Hopefully today will be better with both behavior and hearing!

Rats (Another Ear Infection)

Nolan kept complaining that his ear was whistling the other day. I checked the hearing aid several times, but I couldn't hear any feedback. I did a listening check, and everything sounded A-OK.

Then, last night, he started screaming in pain. After a little while, he said, "I feel better now," and a thick stream of horribleness started pouring out of his ear. Another ear infection, another eardrum rupture.

Off to the pediatrician in the morning. Nolan insists that his ear is "all better" and that he doesn't need to see the doctor. I disagree...

Not sure if they'll try drops this time or an oral antibiotic. We prefer the oral route, since the drops cause so much pain. Also, I'm pretty sure the tube in that ear is gone, so the drops might not be as effective.

Ugh.

Getting Things Ready for Cleveland Clinic

Our pediatrician has faxed off the necessary medical records to Cleveland Clinic - it is a great relief to have this done. I picked up my copy of the faxed documents, and realized several records were missing. They sent:

A letter from his GI noting adequate control of the reflux (this was sent a year ago).
A letter from his ENT showing poor control of his reflux, and showing the diagnosis of laryngomalacia.
One audiogram.
A report from Nolan's posterior urethral valve surgery.
One sleep study report.
His normal EEG findings from the staring spells a long time ago.

They are missing all the labwork (showing the slightly elevated AST levels), his endoscopy biopsy results (showing ectopic gastric mucosa and flattened villi), his MRI's and CT scans, all ophthamology reports, and all of his pH probe results. Not to mention the four sets of tubes from chronic middle ear infections, the history of being failure-to-thrive (especially since he is dropping on the charts again), and the surgical failures to control apnea (tonsillectomy and supraglottoplasty). And then there is the mixed hearing loss which is slowly progressing over time.

I made a few phone calls to specialists this morning: I called the GI to get his biopsy record, lab work results, and pH probe results faxed over. I called the ENT and the audiologist to have the same thing done. I still need to call the ophthalmologist.

I have several release forms to fill out and send back to the specialists - it takes quite a lot of work to get everything organized. I wouldn't be so worried about the whole thing, but our insurance company has approved only ONE visit with the geneticist, and won't cover any lab work or follow-up visits. Because of this, we need to have all the ducks in a row. We only get one shot at this - we need to make it count.

Hopefully all of the records will be into the Cleveland Clinic in short order.

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.

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.

Germs, Germs, Go Away

School started about a month ago, which means that the lovely back-to-school viruses have been making their rounds. I hate colds, because Nolan gets sick even when it isn't cold and flu season. And when he gets sick, he is usually sicker for longer than the rest of us.

I was pleasantly surprised that Nolan didn't catch the latest bug, and whispered a quiet prayer of thanks, since his surgery is fast approaching. Then he woke up this morning. To say he was cranky would be a vast understatement.

We survived shopping at Wegman's, with a screaming child throughout the store. Then I took a closer look at him and saw the red circles under his eyes. By the time we got home, his nose was running. He felt a little warm. He is still very, very cranky.


Dear Mr. Cold Virus,

Please be gone by October 12, and please do not cause another infection in Nolan's (tubeless) ears.

Thank you very much,

Nolan's Mommy.

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!

Drying Out

Playing in Box City

We headed out to the pediatrician's office yesterday, to get a gander at Nolan's leaking ear. The random-pediatrician-of-the-moment peeked with the otoscope and declared a rather severe infection. He can't even see the eardrum, because the infection is so thick it is completely occluding his ear canal. The solution? Ten days of Amoxicillin and Ciprodex ear drops. If the infection doesn't clear, we are to return to try something stronger. Hopefully the Amoxicillin will wipe the infection out.

Nolan hates ear drops. He'd rather chug oral medications by the truckload than deal with the sensation of liquid sliding down his ear canal. You can imagine the fun we're having pinning him down several times per day for the infernal drops.

Hopefully, in ten days, the infection will be gone and we won't see any more leaky ears for the rest of the year. A girl can hope, can't she?

Leaky

Perhaps Nolan's little art demonstration yesterday was really his attempt to write us a letter:

"Dear Mom: Just as an FYI, my right ear is going to start leaking again tonight."

Remember the ear infection he developed in California? We treated him with Ciprodex for the recommended period of time, things seemed to dry up, and we were relieved. Until last night, that is. Nolan started chucking his right hearing aid across the room yesterday, which usually indicates a dead battery or an ear infection. Sure enough, there is sticky fluid in the ear canal.

Beautiful.

We're off to see the pediatrician at 4:00 today. We're in for more Ciprodex and possibly some oral antibiotics. Ugh.

Contemplating Swimming Lessons

When Matt was a baby and young toddler, I did several parent-child swim classes at our local YMCA. He segued nicely into the independent swimming classes (sans parents) and is learning how to float and blow bubbles with several other four-and-five year old children.

Things have gone quite differently with Nolan. I have tried to do parent-child swimming classes twice, but his chronic, unrelenting ear infections have caused us to drop the classes due to frequent ear drainage and PE tube surgery dates.

Now that we have this round of infections under control and his third set of tubes in place, I have started to consider swimming lessons again. If only hearing aids were waterproof!

Our local YMCA offers parent/child classes for children under the age of three, which doesn't present a problem. I am with Nolan the entire time, within six inches of his ear, and I can sign and shout and sing loudly in the water. At the age of three, most children transition to the "Pike" swimming classes, without parents. With several classes occurring at once in an indoor pool environment, Nolan can't hear at all. His unaided hearing is entirely below the speech banana, so unless you're pretty close or talking loudly, he can't hear you (even in a quiet environment).

Then, because he has tubes and will be submerging his head, he'll need to wear earplugs. Earplugs which will occlude is hearing and reduce any residual hearing to nothing.

I'm not quite sure what to do about swimming lessons. Do I simply wait until he's older and has more coping techniques for dealing with an inability to hear in the water? Do I contact the Y and try to get someone to create an adaptive program for him? Do I put him in the regular class and hope for the best?

Parents who have "been there, done that"- what did you do?

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.