October Update

Wait, that's right... I have a blog! Perhaps I should update it...

I have several very good excuses for not writing:

1) The kids returned to school and our routine activities keep us busy.
2) I have returned to work part-time and now barely have time to breathe.
3) It looks like this outside:

When it is beautiful outside, I relish every last second of it. Snow is due to hit this Wednesday, so we have been outside soaking up the vibrant beauty of fall.

Nolan's ENT has not been able to return to work. I  heard a very devastating rumor, but have not been able to confirm it. In the meantime, we are praying for her and for her family. We have been moved to another ENT in the same practice, who is now managing both boys' care.

Nolan is fairly stable at the moment. He did have another ear infection in September, but a round of Ciprodex cleared it up fairly quickly. He did have to start school with one ear, but managed to compensate well for the lack of hearing. We do want to look into new hearing aids for him and to obtain an aided audiogram/real-ear testing on a regular basis. He has a hearing aid evaluation tomorrow afternoon - we would like to get water resistant aids with updated technology.

Matthew failed his last sleep study, so his appointment was a bit longer. The new ENT was reviewing his records and decided that we should perform a pH probe to determine if his red/burned airway was truly due to reflux - or some other reaction (there are conditions that mimic reflux). Matt will have his pH probe placed on Friday and will have it taken out on Saturday.

In addition, we aren't certain if some of his ADD type behaviors are due to sleep apnea or to other factors. The new ENT would like to run testing for central auditory processing disorder, which is often confused with ADD (inattentive type). The testing for this disorder is very similar to a hearing test, so he will have testing performed at the same time as Nolan. Two birds, one stone.. at least we're efficient with our appointments.

This means I have three trips to Buffalo this week, and an oral surgeon appointment (I broke a tooth and will have it removed/probably get an implant). Did I mention I am working part time? Some weeks it is very part time. Sigh...

I will try to update more frequently - I keep waiting for things to slow down, but that doesn't appear to ever happen!

Ear Infection (Again)

Nolan had a fantastic time the week of his birthday. He went tubing on the lake, went to a water park, and we took a trip to Toronto.

Unfortunately, all the heat/humidity/water activities  resulted in a raging ear infection in his right ear. I was able to acquire more Ciprodex drops and started treating it quickly, but Nolan had to start first grade with only one ear.

Thankfully, his new teacher of the deaf (TOD) is beyond fantastic. She actually trained at the Clarke School (an auditory-verbal program) and is thrilled to see Nolan is reading at an advanced level. He is having significant problems hearing, so his desk has been moved to the front of the teacher's desk, and he has daily pull-outs to work on the curriculum in a 1:1 environment. He is adjusting to first grade well, and loves his teacher(s).

His ear took about a week to clear up. Hopefully we won't see another ear infection for a while!

Ready for Surgery Tomorrow

Our second attempt at Nolan's revision supraglottoplasty is tomorrow. His ear infection seems to be under control (still on the Ciprodex and antibiotics), though his stomach has been acting up. Lots of fluke vomiting attacks and hurting tummy moments - he's had a day or two of "good eating," but is otherwise not doing well on that front. Hopefully his stomach will be in good spirits tomorrow morning.

We have the dog at the kennel, Matthew is with our friends for a couple of days, and we're heading to bed so we can be up at 3:30 am tomorrow. Hopefully his airway will be clear and the surgery will proceed without a hitch.

Sweat Test

Since Nolan has both digestive problems and respiratory issues (along with chronic sinus and ear infections), a sweat test was ordered to determine if he has cystic fibrosis. We went up to Buffalo Children's on Tuesday and checked into the lung center.

The technician cleaned his arms and placed the electrodes on his right arm. She added the Pilocarpine and turned on the electricity - the electricity generator looked like a giant car battery.

Nolan was very brave and sat still for the test. The technician said it feels like the pins and needles when your leg falls asleep - a very strong tingling sensation.

Nolan did say, "It hurts, Mommy," a few times, but he sat still for the test.

After five minutes of stimulation on his right arm, the area was wrapped and the same process was repeated for the left arm.

Once both arms were finished and wrapped, we went off to wait for about 30 minutes. Nolan's sweat was collecting into the filter paper as we waited in the small waiting room in the CF center.

After the thirty minutes had passed for each arm, the gauze was unwrapped and the filter papers were taken by the technician to be weighed and analyzed for the concentration of chloride in his sweat. We left and went to Chuck E. Cheese as a reward for being so very brave.

I called the pediatrician's office today to find out what the results to the test were. Sweat chlorides over 60 mmol/L are positive for cystic fibrosis, chloride levels between 40 - 60 mmol/L are equivocal (might have CF), and levels below 40 mmol/L are considered negative.

Nolan's sweat chloride level was 9 mmol/L - very NEGATIVE for cystic fibrosis.

I am glad we have ruled it out, as our treatment strategy would change if he had CF.

I am extremely relieved that his lungs are healthy and we won't ever need to worry about this again.

ENT Appointment: Ear Infection Damage Control

Heading into Space at the Museum of Science

Honestly, Nolan gets the worst ear infections I have ever seen. They appear whether or not he is on antibiotics, and they last for 2-3 months at a time. It is simply ridiculous. The last one he had was in October of 2012, which is when he had his tubes removed and a fifth set placed. The ENT had to place 2 tympanostomy tubes into his right ear to drain the infection.

This morning, he was draining infection from the right ear, and I called the ENT's office. "Can you be here by 11:30 am?" they asked. With a lot of rushing, we made it out the door by 9:30 am and were on our way to Buffalo. My mom is visiting from California, so at least the boys had some extra company in the car!

There was almost no one waiting at the ENT's office, which was a relief. We saw the nurse practitioner today, and she was fantastic. Nolan did have to take a trip to the procedure room to have his ear cultured and vacuumed out. He started screaming and thrashing the minute we started down the hall - he hates having his ears cleaned out.

The NP was very, very gentle and we got it done as quickly as possible, but Nolan was NOT amused. He only kicked her twice this time around, which is a slight improvement over last time. She went to discuss the situation with Nolan's ENT, since he has surgery planned on Tuesday. The ENT verified there was nothing else to be done, and also said, "He better not get sick!"

Ugh.

I will call and find out the culture results on Friday. If it is a fungal infection (again) he will need Lotrimin suspension for his middle ear. If it is a resistant bacteria, then we'll need a different antibiotic. At the moment, we're continuing with the oral Augmentin (he was already on this medication) and add in Ciprodex drops.

After the appointment, we took a trip to the Buffalo Museum of Science. Nolan was very impressed by the mummy exhibit, and told Dennis about the "dead mummies in boxes." Both boys loved the hands-on exhibits and it was nice to have some "fun time" with my mom.

In Other News...

Nolan has an ear infection. Again. It is the right ear, which is the ear that is almost always infected.

He's already on antibiotics.

Lovely.

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.

Back to "Normal"

We took a trip to Washington, D.C. for Dennis's marathon over the weekend, and drove home when Hurricane Sandy hit. It was an interesting trip, as it was a bit rushed (we were only there for a few days) and Nolan still wasn't quite "right" with the world. He was still on the anti-fungal ear drops and was extremely cranky. Toward the end of the trip, we had him wear his hearing aid again in the right ear. He was not pleased, as everything sounded extremely loud after a month of not wearing it.

With a 75dB loss in that ear, I can only imagine how uncomfortable the transition to hearing again was. He refused to wear his glasses while adjusting to wearing the right hearing aid again - a strange reaction, but so be it. He has now finished his ear drops and is wearing both hearing aids and his glasses again, so all is right with the world.

We forgot to bring the stroller to D.C., which was a huge mistake with the little guy. There is a lot of walking in the Capital, and it was all a bit too much for Nolan. The car was full with our suitcases and his medical equipment (the I.V. pole disassembles nicely for travel, but still - traveling with Nolan is an adventure).

We saw the White House, several monuments along the Mall, the Air and Space Museum, and the Natural History Museum while we were there. We want to return again in a non-marathon capacity to see more of the sights!

The marathon went well for Dennis and his dad, who ran the 26.2 miles in less than 4 1/2 hours. Dennis's aunt and uncle came to watch, and it was a very lucky thing because Aunt L. was an amazing help with Nolan. Also? She brought donuts. We love people who bring donuts.

The night before we left, we had a really fun visit with Marielle, who is absolutely magnificent. The kids had fun at the McDonald's next door to our hotel. McDonald's would be more awesome if they served some wine and fine cheese, but when in Crystal City during an approaching hurricane, you take what you can get.

The rain and wind started to intensify overnight, and we were up early on Monday to get out of the Capital and home before the hurricane made landfall. There was a lot of wind and rain as we drove, but it was (thankfully) uneventful. The hurricane didn't do much damage in our neck of the woods - a few downed trees and sporadic power outages, but absolutely nothing like the heartbreaking destruction of the East Coast.

The kids have started back to school and we are (thankfully) past the craziness that is Trick-or-Treating. Today I am thankful for the start of November, which is blissfully calm and free of sugar overloads!

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.

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.

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.

"Nolan-Sick"

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!

Referral to Feeding Clinic

The surgeon called back, and gave me the phone number for the feeding clinic at Strong Memorial. They are such a fabulous facility - the ability to email your doctor and the fact that they actually call you at home is fantastic. In any case, we have learned a few things. One is that Nolan is not taking in enough food - at the moment they don't care about the nutritional quality of the food as much, since we simply need to get calories into his body. Obviously the nutrition is needed, too, but he is not a case of sensory food aversion or other behavioral issues- his stomach simply cannot handle a normal quantity of food at any one time. It's not a great picture, but you can see the bloating that occurs when he tries to eat a sandwich:

His stomach cannot digest the food fast enough and he becomes bloated. This causes pain and nausea, which prevents him from eating more. It can take 2-3 hours for the bloating to go down. I will sometimes vent via his g-tube to remove air from his tummy, but we don't want to vent off the food he just ate. So it is a bit of a tricky business, but we are usually able to get the air out and then allow the food to go back in by gravity (at least, as much of it as his tummy will take).

The bloating can get so bad that it will actually push his belly button out. Once we vent he usually feels a tiny bit better, but it is a difficult and frustrating process.

Nolan currently needs 600 more calories per day to obtain growth. His weight and height are stunted, which makes the situation a bit more urgent. The body uses energy for the brain first, height second, and for putting on weight third. When both the weight and height are affected, it indicates his body is not getting enough energy for proper brain development.

We cannot get those calories into him with regular food. We are feeding him as often as possible and it still isn't enough. The solution to this problem, at least for the time being, is to slowly give those extra calories overnight. When (and if) he is able to get those extra calories in by mouth during the day, we can wean down the tube feeds.

The nutritionist was willing to meet with us over the phone since he has such a medical history, but I always prefer to meet the people in person so they can meet Nolan. I made an appointment for August 21 and we will drive up to meet the nutritionist and discuss his history.

In other news, his hearing is still touch-and-go out of the right ear. I think the infection is healing, but we still get a significant amount of feedback if we put a hearing aid in that ear. I am still very hopeful the infection heals before we fly!

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!

Happy Flag Day!

Matt and Nolan's elementary school always has a big celebration of Flag Day.* I love it, as it is a big tradition in their school and the kids love making hats and marching in a parade.

Nolan's ear is looking better, with no active drainage for the past 2 days. His sinuses are looking better, too. The oral antibiotic is definitely a huge advantage -we never see a benefit from the Ciprodex or Floxin drops when used alone. I think this is due to the fact that Nolan's ear infections are nearly always coupled with a sinus infection, so you have to clear one to clear the other. He still has a few more days on the Augmentin, so I am hopeful that he will be nice and clear for the rest of the summer.

His hearing, on the other hand, is still a little shaky. I think that has more to do with being aided in only one ear, as he is effectively deaf in the unaided ear and his "good" ear aids up to a mild hearing loss level. He really does much better with two ears to hear - if his ear is still clear tomorrow, I'll put both aids back on.


*Yes, I'm aware that Flag Day isn't until June 14, but the school celebrates early!

For the Love of Antibiotics

I took Nolan to the pediatrician on Tuesday and found he had an ear infection (which we knew) and a significant sinus infection. He's on Augmentin for ten days and is receiving Ciprodex drops again in the leaky ear.

The oral antibiotic isn't his favorite, but this is one of those times we are glad for the g-button. At least it makes a few things in life easier! The ear drops are another thing - Nolan has always experienced pain with them, and dreads them more than getting a shot. I've been sneaking into his room at night and in the early morning to put them in his right ear... while he's still asleep. This little tactic works for the most part, unless he rolls over and the drops come right back out. Still, it is better than the rage that ensues from pinning him down when he's awake.

I do think his random falls are vestibular in nature, though. He fell on the bus last week (from a sitting position on the seat - he had no idea he had changed position). Sure enough, he developed an ear infection a few days later. I think the changing pressures in his middle ear messed with his vestibular system.

On the upside, he is happy and doesn't appear to be bothered by the infection at all. He started playing soccer last night and he is the oldest child on the team. I am so grateful he doesn't have a July birthday, because then he would play on the U-6 team rather than the U-4 team. He is finally the same size as all the other kids, and he loves it. There is a two year old on his team, but that doesn't bother him! It's nice to be one of the better players once in a while.

Hearing is definitely a problem on the field. He only has one aid in and he's not hearing very well at all. There is a lot of waving and signaling - and the coach is learning that if she calls "red light, green light" from behind the kids, Nolan will always win. He doesn't hear the instructions, so he just runs for the finish line!

The U-4 league is great, though - it is about learning the basics of soccer and is not competitive. The kids often play with more than one ball on the field and have a blast. It is perfect for my little guy this year!

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!

Records and Registrations

Nolan's registration paperwork came in the mail on Friday, so I filled out the insurance information, signed on the dotted line, and sent the form back to Golisano Children's. We also received our insurance approval for an inpatient stay on Friday, so that was quite the relief. No fighting on that front, at least!

 I feel rather unsettled about Nolan's pathology report from two years ago. That is one of the only medical records I don't have in my possession, and I never worried about it at the time because he had reflux, and that was what the pathology report would have been looking for (evidence of reflux inflammation in the esophagus). I sent in a request to Nolan's former GI doctor on Saturday, requesting a copy of that pathology report. I want to be able to understand the "cellular changes" and what they mean, so I can ask the GI team in Rochester better questions.

 Nolan's ear looks pretty clear, though I've kept his hearing aid out in his right ear. I'll try putting his aid in again tomorrow morning, and hope for the best. He's really tired today and fell asleep on our way home from Erie, PA - Matt's been a little sick so hopefully Nolan won't come down with it!

Getting Better

Nolan is a few days into his oral antibiotic/Ciprodex ear drops, and his ear has stopped leaking. I'm keeping his right hearing aid out until we're done with the antibiotics, so he's still a bit compromised with regard to hearing. It is amazing how much losing all hearing in one ear does, even when the other ear is aided. He really struggles and often asks for us to repeat things.

Last night, I read a story to the boys, and Nolan sat to my left. He shook his head after a few minutes, then climbed over me so he could sit to my right. It took me a minute to figure out what was going on, but then I realized his "deaf" ear was closest to me when he sits on my left. At least he's figuring out how to accommodate for it!

Our weather has turned "warm" again, hanging out between 32-45 degrees, depending on the day. That's 0-7C, for the rest of the world. Very, very warm for Western NY in the winter. Since Matt was kept home from school for a couple of days, he enjoyed riding his bike and playing outside. Unfortunately, the snow has disappeared, so the sledding has come to an early end.

Matt's mystery rash has also started to disappear, and he isn't itchy anymore. I sent him off to school this morning, and he was more than happy to go. Hanging around the house all day isn't much fun for him, especially when his brother is gone and Mommy is stingy with the cartoons!