Monday, December 31, 2012

A Fantastic Christmas

Christmas was perfect this year - with the exception of Dennis catching influenza. The rest of us had our flu shots, however, and didn't get nearly as sick as he did.

The boys were up early, and extremely excited that Santa had arrived. We had a quiet morning opening gifts, and the boys took their new Green Machines outside on the street for a quick ride. There is no transcript, as the boys aren't saying anything - Nolan occasionally says, "Whoa."

Nolan's stomach has been doing a bit better. He's still not quite up to par with his eating, but yesterday he ate half a can of spaghetti-o's for dinner. He hadn't eaten anything the rest of the day, but hey - we take what we can get! We also went sledding at our local hill, and the kids had a great time going over a jump on the hill.

Here's to a happy and healthy New Year!

Sunday, December 23, 2012

Expecting a White Christmas

It has been a very dismal fall, with no snowfall to speak of and an absolute lack of sunlight. A blizzard was moving across the Midwest, and I was very happy to inform Matthew that his seventh birthday should dawn with an abundance of snow.

When we woke, over a foot of snow had fallen. The kids spent all day Saturday doing this:

Nolan's stomach has decided to give us trouble again. He's coughing and "choking" a lot, which is typically a sign of reflux. He quit eating yesterday, and only had a few grapes and a piece of string cheese throughout the entire day. Today, he ate 2 doughnut holes in the morning and five hours later, he was still bloated.

He's back down to about 36 pounds on the scale, but the overnight feeds are keeping him from getting any lower. Hopefully his tummy will decide to start working again soon, because this really isn't much fun. He isn't sick in any way, just can't eat and very bloated. He also has white diarrhea again, which no doctor seems to care about.

Despite the tummy trouble, we're all resting, playing, and enjoying a quiet weekend before Christmas arrives!

Monday, December 17, 2012

Why We Don't Own a Horse

We were driving down to Erie to do some shopping yesterday. Nolan decided to entertain himself by asking us endless questions, including what would happen if one could reach the end of the known universe (would you end up back at the earth, or simply continue on into nothingness?) - my brain hurt by mile 5.

"What would happen if you had no feet?"
"What if there was no water?"
"What if you had no home and no tent?"
"What would happen if the sun was closer?"


"Hey, can I have a horse?"

I think he was trying to wear us down with questions, so that we would numbly say, "Yes, Nolan."

Dennis answered,

"No, son. You need a stable for a horse."

Nolan said, "We could staple him to a tree."

Dearest Nolan, you need a staBle, not a staPle!


Saturday, December 15, 2012

Santa Wears Glasses

I am a cheapskate. I have a hard time forking over a large amount of money for the mall Santa. Especially since Nolan is incredibly afraid of the guy in the red suit.

Whenever I see an event featuring a "meet Santa" experience, we attend and make our visit with the Jolly Old Elf. These events are free, so if Nolan completely freaks out, there is no loss. This year, Home Depot advertised their Saturday workshop event - complete with a visit from Santa.

We went to see Santa, and Matt sat on his lap and asked for his Christmas gift. He wants a bell from Santa's sleigh (can you tell we read the Polar Express)?

Nolan hid behind Dennis. I tried to bribe him to go up to Santa so I could get a picture, but no dice. He's shy, and it was simply too overwhelming.

So Santa came to Nolan. He got off his big chair and knelt down on the floor. He looked at Nolan and said,
"I have glasses, too."

Nolan smiled and got closer to Santa. He didn't really talk to Santa, but was in complete awe. Home Depot Santa chatted with Nolan and took a lot of time with him. Home Depot Santa knocks the socks off the mall Santa.

To the Home Depot Santa, thank you for being a really great person today. You made a little boy's day.

Thursday, December 13, 2012

Broken Mic-Key Buttons

I called Kimberly Clark about Nolan's (two!!) broken Mic-Key buttons. Their customer service was wonderful, and they sent me replacements via FedEx by the next day. They also sent a box so I can send in the two broken buttons for testing.

For those unfamiliar with g-tube buttons, the stem is inserted into the stomach and a small balloon is inflated with 5 ml of distilled water or saline solution. The balloon keeps the button from falling out of the stomach, and usually lasts about three months. These buttons had the balloon burst wide open, which causes the button to fall out.

Both of these buttons are from the same lot, and the button placed in September broke on the same day we inserted it - it lasted about 6 hours in Nolan's belly. We replaced it with another button (also of the same lot), and that one lasted from September to December - the typical "three months" one would expect from a Mic-Key button. It became clogged and the balloon had a slow leak, so we replaced it in early December.

A week later, Matt comes running and yelling that Nolan's button was gone. This isn't a good situation, because the stoma (hole in his belly) can begin to close and then we have to drive three hours to Rochester for surgery to dilate the hole again. Our local hospital can't help him, and this is when I don't like living in a rural area. After having a mini panic attack, I managed to get him onto the floor and put another button in - it was a very tight fit and caused some pain, but it went in.

Matt found the other button on the living room floor - judging by the amount of stomach acid leaking out of the stoma, the button had fallen out a while before anyone noticed. Nolan had no idea it had come out of his tummy, which is scary because we can't rely on him to report "button problems." Ugh.

In any case, a new button is now in (though it is the same lot as the "broken" buttons). We have back-ups from a different lot, graciously supplied by KC's customer service.

Hopefully we won't have another bursting balloon!

Sunday, December 9, 2012

Still Here!

We are still here, despite the lack of blogging activity lately. This time of year is always insanely busy, and our activities in real life have precluded my ability to keep up with this blog.

I have also reached the maximum photo limit for this blog. I'll have to start a new one if I want to upload any additional pictures. Nolan looks exceptionally cute lately - you'll just have to trust my written word on it! *Update - I broke down and paid for the extra storage. See? He's really cute.

As for updates, Nolan's eyes are doing really well. His amblyopia continues to improve and we are happy to have a six month reprieve from the pediatric ophthalmologist's office. I do need to get his new prescription filled, so we will do that next week.

We also had his follow-up appointment via the ENT. Things are going well with regard to his ears. He's been infection-free for a month, which is fantastic. We will have to discuss the possibility of another airway surgery in the spring - we have another appointment in February to make the decision. In the meantime, he's going to have another sleep study/C-Pap titration in January. Since Matt often snores, we're having a sleep study done for him at the same time. Killing two birds with one stone.

We are also going to get aided testing via a different audiologist, since our current audiologist simply refuses to do aided testing with hearing aids. It's beyond ridiculous, so hopefully this new audiology group will perform that testing on a regular basis. They can't do cochlear implants, so if we decide to go that route, we will need to find someone else. Our area isn't the best for medical or audiology care.

His stomach issues are still frustrating - he's doing really well with the overnight feeds, but we aren't seeing any progress with his daytime eating. We'll take it as it comes - as long as the overnight feeds are enough to maintain growth, we're golden. Our ENT did mention a gastric pacemaker as an option if his stomach function ever declined in the future.

We've been having a lot of issues with our insurance company and getting replacement Mic-Key buttons. Our insurance company only allows a new button to be issued every 91 days. Unfortunately, not every Mic-Key lasts a full 90 days. Nolan had a balloon burst on one in September. We replaced it and he had a good one from September - December, when we had to replace it due to clogging and sheer age (the balloon developed a slow leak). Our insurance company told us we couldn't get a new back-up until January. Fortunately the Home Healthcare Company sent one in our monthly shipment (there was a lot of anxious whining on my part to get them to send one). We're three hours from URMC and we don't really have a lot of options if it falls out and we don't have a back-up. Our insurance company will get to pay for surgery instead of a button if it happens.

I am REALLY glad the HHC sent us a backup button, because Matthew started screaming, "Nolan's button is GONE and his tummy is bloody!" Yep. Another Mic-Key failure. The balloon burst on this one, too. The same lot number as the one that burst in September. I am so frustrated. I was very glad to have the backup, and we managed to get it into his stoma (with a bit of a struggle - the stoma starts to close up very quickly).

I'm starting to wish we had gone with a Bard button. It has to be changed in the OR, but at least it lasts a year or so!

I have to start thinking about getting a new blog - if I do, I'll link to it from a new post. Pictures are sometimes necessary!

Sunday, November 11, 2012

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.

Thursday, November 1, 2012

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!

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!

Thursday, September 27, 2012

The Best Thing Ever

Nolan's weight has skyrocketed. He still looks..skinny, but holy moly - the overnight feeds are working.

In late July, Nolan weighed 31 pounds. He was nearly five years old. We started the overnight feeds 2 and a half weeks ago, and he is now (drum roll please....)


Yes, folks. You read that right. 36.5 pounds.

Did you know that Nolan has dimples in both cheeks? He does. He has been so underweight for so long that they weren't visible. They're coming back. Which is why I was teary-eyed in the surgeon's office, thanking the nurse for going the extra mile and working through the insurance company/home healthcare agency mess.

There have been some unexpected side benefits from the overnight feeds as well. Nolan has always been a zombie boy when we attempt to wake him in the morning. He would sleep until 10am if we allowed him to, and is so floppy and unresponsive that he often won't eat breakfast. We always blamed this on the apnea, but C-Pap never helped with Morning Zombie Boy.

Since we started the overnight feeds, he wakes before us. He is able to walk and talk. He has energy.

The surgeon made a mention of hypoglycemia, which would make sense since he spills ketones when sick and literally flips out if it has been more than an hour or two since he last ate. His blood sugar is kept stable throughout the night with the feeds, so the theory goes, resulting in "normal boy" every morning. Zombie boy has vanished. The theory makes sense, though we haven't tested for hypoglycemia and likely won't, since he's getting the overnights already.

In any case, he is absolutely thriving. It is likely that his weight will level off a bit soon, as his body is in overdrive and making up for lost time. He's had some joint pain and is probably experiencing growing pains.

His heart murmur is a lot more noticeable lately - both the substitute nurse and the regular nurse heard it, and people don't hear it very often. It was quite loud and obvious last Friday. It's something we'll keep an eye on. He had an echocardiogram at the age of three (before he had developed a murmur) and they saw nothing unusual, so it is likely an innocent murmur.

It is nice to have things settle down on the medical front and have Nolan so healthy and growing.

I love it.

Wednesday, September 19, 2012

Kindergarten: The First Few Weeks

Nolan loves Kindergarten. "Loves" might be an understatement. He is absolutely thrilled to go to school each day. He loves his teacher and he loves his TOD (teacher of the deaf). He's doing really, really well.

He is getting some help from the Occupational Therapist. His fine motor skills are lagging and his hyperflexible joints/hypotonia in his hands does create a few minor issues. It is something we're monitoring and we haven't written the OT into his IEP yet, but that is on the table. Hopefully a few sessions with the OT will help him develop some coping skills for his weak(er) hands.

He knows all of his letters (except for G, which he has apparently forgotten over summer vacation). He knows most of his letter sounds, with the exception of E, L, U, X, and Y. Not too shabby, though I'm a little bummed that he forgot a few of his sounds over the summer. We did work on them, but we also had a lot of other experiences (like fossil digging and swimming) that I feel are equally important to creating a well-rounded child. We'll work on the forgotten letter sounds and he'll have them down pat soon.

His FM system is working wonderfully. He came home today and recited the following poem to me:

"I am mother circle, round like a pie.
I am baby triangle, three sides have I.
I am papa square, my sides are four.
I'm cousin rectangle, shaped like a door."

This thrills me for a lot of reasons. Firstly, he is hearing his teacher very well. Secondly, his auditory memory is excellent to remember the entire poem. His hearing aid batteries died at school last Friday, and his teacher changed them without incident. I love her.

His eating is hit-or-miss at school. He often only eats a couple bites of his sandwich at lunch, a Go-Gurt and a small clementine. Sometimes he manages to eat more of his sandwich. He does eat all of his snack in the afternoon. On the days he doesn't eat well, he'll often come home and eat a large after school snack - which then impacts dinner. We're not too worried about it - if he's hungry, we give him food. If he is bloated or simply "too full," we just let it go. We can always make it up at night.

I can't wait to see him blossom throughout the year. He absolutely loves everything about Kindergarten, and is happy to be participating in gym again. Now that things have quieted down on the medical front, we can relax and enjoy the school year!

Tuesday, September 18, 2012

Finally Up and Running

The Home Healthcare Company (HHC) dropped off Nolan's supplies on Thursday, but we still had no formula. I'll cut the story short, but several phone calls to Rite Aid (our pharmacy) and our surgeon's office left everyone very frustrated. Rite Aid stated they needed prior authorization, our surgeon's office stated they had sent in the prior authorization to the insurance company, and Rite Aid continued to state they didn't have the prior auth.

Sometime on Friday I was so frustrated I started using my Angry Voice. Eventually, we discovered that the HHC had made two errors. Firstly, they were not to charge $500 per month for the pump and accessories, because we had met our deductible. Secondly, they were supposed to provide the formula, because the prior authorization had been set up between the insurance company and the HHC.

The nurse came on Friday afternoon, and I ran to Walmart to buy some over-the-counter Pediasure. It was $10 for three nights' supply, which isn't terrible. Still, that cost would add up over time, and the OTC Pediasure isn't the same as the formula ordered by our surgeon's office. They had ordered Pediasure 1.5, which is a medical food and has a higher calorie density per ounce. The HHC finally delivered the Pediasure 1.5 yesterday.

We ran the pump for the first time on Friday night. It went well, though the feed ran out early for some reason. The alarm went off at 3:30am and we had a steep learning curve ahead of us. Dennis had taped the connections together, because we were terrified something would come apart in the night. As it turns out, this is a bad idea - primarily because you can't get anything apart at 3:30am, and the frustration is worse when you are exhausted. The type of tape used was bad, too - we couldn't get it off Nolan's skin and struggled with it for quite some time. Once we got it off, I went downstairs to rinse everything out and came back to flush his button.

The second night, we worked out the logistics. We didn't use any tape on the connectors (the "Christmas tree" port from the formula bag fits pretty snugly into his Mic-Key extension). We used a tape with less adhesive to secure the tubing to his tummy, so it would come off more easily. I also primed a large syringe with water, ready to flush his tube once the feed was done.

Nolan woke at 2:00am and had to go to the bathroom. My brain was in an utter fog, so I grabbed the IV pole and followed him to the bathroom. I managed to hit our hall light on the way, and I am pretty sure I wasn't entirely conscious. I put Nolan back to bed and he cried out every 10 minutes because he was scared. I eventually put my blanket and pillow on the floor and dozed next to his bed for the next three hours. I couldn't really sleep, of course, but at least I didn't have to sit bolt upright next to him. He was having nightmares and really wanted some reassurance. I disconnected him at 4:45am and that part of the process went very smoothly.

We finally hit our stride on the third night. Yes, Nolan did wake and have to go to the bathroom. This time, however, I had a few more brain cells firing. I put the pump on "hold" and disconnected the boy instead of hauling the IV pole to the bathroom. He went back to sleep after this and I disconnected him when the formula run was done - it took all of two minutes.

We're getting into a routine with the "Grow Juice," as we call it. Nolan has actually asked to go to bed and get hooked up for the past two nights. He likes the idea of growing and has a lot more energy in the mornings. He used to be a rag doll in the mornings and very zombie-like. We used to blame that on the apnea (which could certainly play a part), but since starting the overnight feeds he has been waking without a problem in the mornings and has come bounding downstairs. The slow drip of nutrition overnight agrees with him.

We have not started his C-Pap therapy alongside his overnight feeds. I will try the combination tomorrow: we wanted him to get used to the "Grow Juice" without having the mask over his little face.

Here's to a growing boy!

Friday, September 14, 2012

Finally - Back to "Normal"

Oh, I love the Mic-Key button. It is so much nicer than the log PEG tube. Nolan wasn't happy (to say the least) about having the tube change done, but I am glad it is done and over with. The tape used to hold the g-tube in place while he was at school left a lot of adhesive residue. He's also allergic to adhesive (even the hypo-allergenic tape causes a reaction), so he has some open sores on his belly. His little tummy should heal up over the next few days and I'll use some baby oil or adhesive remover to get the "gunk" off.

He had some bloating last night and didn't eat dinner, but fortunately ate his breakfast this morning. The nurse comes this afternoon to help us set up his equipment.

Thursday, September 13, 2012

Finally! New Button, Pump, and Supplies

Oh, thank goodness. Nolan's new Mic-Key button, pump, and accessories were delivered. Though I have to admit, it is strange to have an IV pole delivered to your doorstep.

It will be a relief to get the new button in place, so that he can ditch the long, old-school style PEG tube.

The nurse is coming tomorrow at 4pm to teach us how to set all of this up.

Now, I just have to call the pharmacy to see where his formula is!

Wednesday, September 12, 2012

Jumping Through Hoops

The short story: we have a button and pump coming on Thursday. The formula should come into the pharmacy shortly thereafter.

The long story: The Home Healthcare Company (HHC) called me back early yesterday afternoon. They are in our area on Thursdays, they said, and could drop off the pump and his Mic-Key button that day. Our insurance, however, would only pay half the cost, so we would have to pony up $500 per month to pay for his pump rental.

I told them to go ahead and schedule delivery, because we really needed to start the nighttime feeds to see if they help him gain weight. I then called our Amazing Nurse J and told her what the cost was going to be. She was concerned at the cost and told us that we could also do gravity feeds at night: basically, we could set an alarm and get up twice during the night to feed him with a syringe. Considering we couldn't do $500 per month as a long-term solution, I thought that sounded just fine.

Still, something didn't set right. I looked online and found brand new pumps for $1,000. The HHC charges $12,000 per year to rent one. Are you kidding me?

In the meantime, Dennis was on the phone with our insurance company, to determine why they would only pay 50% of the cost. As it turns out, they do only pay 50% of the cost if the tube feeds are supplemental. If they are his sole source of nutrition, they pay all costs. The upshot is that we have met our maximum out-of-pocket for Nolan this year (I haven't finished calculating, but let's just say our expenses this year are in the $10,000 range - and we haven't bought new hearing aids yet).

Since we have met the deductible for him, the pump rental will be free until the end of the year. The formula will only be $50 per month.

This required another call to the HHC to determine why they calculated a $500 per month bill when we had met our deductible. As it turns out, they were billing us without looking at our individual policy. They know that our insurance only pays 50% for durable medical equipment (DME), so they billed us half the monthly cost. After talking to a few high level managers, they corrected the error and we won't get a $500 bill in the mail each month. They also re-trained their employees to look at the individual policy rather than the payment rates, since many people with complex medical needs meet their deductible early in the year.

In January, however, we will get a bill for $500 every month. We will be returning the pump before January 1, 2013.

The sad thing is, the HHC charges $12,000 to rent a pump that only costs $1,000 to buy outright. There are used ones on eBay for $200. We mentioned this to the HHC and they stated that those pumps don't come with a service contract.

You know, Dennis and I both have degrees in biochemistry and have worked with peristaltic pumps for a long time. Pumps that are much more precise and fickle than a feeding pump. You can buy a pharmaceutical grade pump (with service contract) for about $4,000. We're not so worried about the service contract. For $12,000 per year, we could buy 60 pumps on eBay.

I honestly can't figure out why the insurance company (which is willing to pay half the cost every month) hasn't figured this out. They could buy every child who requires feeds a pump (minus exorbitant service contract) for a lot less money than renting one through the HHC. They could even buy each child two pumps and come out ahead, and the family could have one as a back-up if the first one breaks.

Anyhow, if there are other families out there who are hit by this same ridiculous fee (in the USA), go take a look on eBay. It'll save you some serious money.

Tuesday, September 11, 2012

Button, Button, Where is the Button?

Honestly. How hard can it be to get a mic-key button that your doctor ordered for your child? And formula and a pump when your child is failure to thrive?

Very, very hard.

I called our surgeon's office to see about the status of the Mic-Key button, since Nolan has been stuck with a full g-tube for nearly 2 weeks and is prohibited from gym, has horrible skin ulcers from the tape, and is getting granulation tissue from the pulling/rubbing of the longer tube.

Insurance, of course, put every roadblock in the way. The doctor's office sent over all of the weight data and medical information. It was finally approved, so the home healthcare agency (a new one, since our old one was useless when it came to g-tubes) is in the process of getting everything together.

Of course, insurance will only pay half of the cost of the formula, mic-key button, and pump. Health insurance is really only for healthy people, not for those who actually need medical care (despite having paid premiums forever). Half is better than nothing, but with all of Nolan's issues, the cost of his care is difficult. We're looking at new hearing aids ($4,000) and glasses (relatively cheap - $100) over the next couple of months. Not to mention several visits to specialists with a $40 copay each time.

In any case, I called the HHC this morning and no one answered the phone. I called a little bit later, and someone finally did answer the phone. They sent us to the person in the pharmacy, who handles deliveries. She said she didn't know about our status, so she was going to send us to the person who handles Nolan's case. Except that the person who handles Nolan's case is on vacation until Monday.

And the back-up person is on lunch. She might call me back if she feels like it. She might not.

I'll call back again this afternoon. The nurse said they were planning a delivery on Thursday, but I doubt it since his HHC "person" is out on vacation.

It has been 2 months since Nolan was diagnosed as failure to thrive. Two months and STILL no treatment due to our lovely medical system.

I will call back this afternoon in a dogged determination to get something done for my son. In the meantime, I have ordered a button online. Just like I did with his C-Pap masks. Sometimes you have to take matters into your own hands.

Monday, September 10, 2012

Still Waiting for a Button

I really, really miss Nolan's "button." His Mic-Key button is so much better than the old-fashioned PEG tubes. He is currently sitting out gym at school because we're worried the PEG will get caught on something. The button is so tiny and doesn't require tape or ACE bandages to keep it in place. The PEG, however, does.

I did make a "pocket" out of some 4x4 pads, but the PEG keps falling out of the pocket. It was a good idea at first, but the ACE bandages work better. A mom on the LTBM Australia board* sent me information on how to make a wiggly bag, which is a bag that hangs around the neck and holds the PEG so it doesn't flop all over the place.

Through a few online contacts, I managed to find a mom who has an extra 12 french, 1.2cm Mic-key on her hands. This is the size Nolan needs, so I'm going to pay shipping and she'll send me the extra button (her child is now in a bigger size and no longer requires that particular button).

In the meantime, I get to play Fight the Insurance Company for his formula and replacement button. I did order one online because there was a sale ($114), but the buttons normally cost around $300 - so we do want insurance to cover them.

Nolan loves Kindergarten and ate really well on Friday at school. This is a big relief! His TOD followed him all day and monitored his hearing in different environments. He doesn't hear at all in background noise, and is extremely reserved and quiet at school. Fortunately, there is one child in his class from last year, and he has been paired up with that child to facilitate socialization. He'll warm up in a few weeks, but the noise of a classroom is a bit overwhelming for him at first.

As a side note, the boy has really taken a liking to sweater vests. His fashion sense cracks me up.

*The LTBM Australia Facebook group is excellent for parents with children who have severe laryngomalacia, TOF/TEF, laryngeal clefts, tracheomalacia, bronchomalacia, etc. It's the only group I have found where there are older children with the more severe complications of these conditions.

Wednesday, September 5, 2012

First Day of School

Kindergarten. I can't believe my baby is in Kindergarten. Class of 2025, here he comes!

Sunday, September 2, 2012

Birthday Boy

Nolan's 5th birthday party went off without a hitch. I was so worried about not having organized games and a lot of cute decorations. As it turns out, small boys don't really care for decorations or games. They were far more interested in running around in the yard.

I had punching balloons out for the kids to play with when they arrived. The kids seemed to like that a lot. Most of the balloons popped on the dry grass within an hour or so, but that was fine as they had moved on to other activities by then.

I also had silly string for a game of Spiderman tag. This was a BIG hit for the boys.

I made "superhero swords" out of pool noodles. This turned out to be a wonderful idea, as the boys spent a great deal of time chasing each other while waving their foam swords.

I did throw a couple of games together. Nothing really themed or overly exciting, but at least the kids had fun. The first game involved tying a balloon around each child's ankle. The kids tried to step on each other's balloons - the last child with an inflated balloon was the winner. The boys loved this and immediately went to chase each other and step on their friend's balloons. The winner of the game had matching chromosomes and wisely went off to the side to avoid the melee of boys. She giggled as she collected her prize.

The next game was a water balloon toss. Except I couldn't find the water balloons and Dennis couldn't find any at the store. We used real balloons instead - and it turns out that real balloons will never, ever break.

We changed the rule to state that the winner would be the first pair to BREAK a balloon. We finally managed to accomplish that task!

Nolan was excited to have his cake, and we sang him the birthday song and he blew out his candle.

He opened his gifts and loved all of his presents. He loves pretend play (and superheroes) and he received several toys that really made his day.

Even though I didn't have much time to prepare for his birthday party and didn't have all the really cute activities I saw on Pinterest, it didn't really matter. The kids all had a good time, we had cake, and Nolan had his friends around to celebrate his special day. It was a very Happy Birthday!

Friday, August 31, 2012

Absolutely Exhausted - Good News and a Fixed Tubie

We woke at 4:30am to start the drive up to Rochester for Nolan's upper GI. It is slightly over three hours to get to the hospital. We were checked in and in the waiting room by 8:30am.

Nolan wasn't feeling all that well and wouldn't walk. I was a bit concerned about the Foley at this point, and was very glad we had an appointment immediately after the upper GI.

Strong Memorial is a much better hospital than Buffalo Children's. The difference is astounding. At WCHOB, parents are separated from their children for all x-rays. At Strong, I was able to don a lead vest and stay with my child during the procedure. Instead of a crowded waiting room with broken toys and waiting for a ridiculously long period of time, we were in a quiet pediatric waiting area and were seen within minutes. They let him keep his hearing aids on for the test, since they were only x-raying his belly. I don't think I'll ever have another test run at WCHOB again. It's worth the extra 90 minute drive.

Nolan drank the barium and we got many images. The radiologist then told me the results, right in the x-ray room.


His fundoplication is intact. The vomiting is likely due to his delayed gastric emptying/gastroparesis. When his stomach decides to shut down and gets too full, then he will reflux past the fundoplication. This isn't due to a failure of the operation, however - this is just something that might happen periodically.

We also saw that the Foley catheter had migrated into his small intestine. He was in pain and we needed to get the Foley replaced with a g-tube quickly. We headed up to the sixth floor where the most wonderful nurse in the entire world (I'm not kidding) set aside plenty of time to help our family.

Nurse J knows that our current Home Healthcare Company (HHC) sucks. They don't do g-tubes (we were set up with them for C-Pap supplies initially). She looked up a good HHC in our area and is setting us up with the new company. She is also going to get us a pump and formula to start overnight feeds.

She also said we can ditch the dietitian, who was frankly the opposite of helpful.

We talked about bolus feeding (giving the Pediasure via tube in three doses), but since Nolan bloats with that amount of volume, I really would prefer to try overnight feeds. We would really like to keep him eating "regular" food, even if it only constitutes 1/2-2/3 of his diet.

I showed the nurse pictures of his bloating. She asked if he had had a gastric emptying scan (GES) recently, and I said that he had one at the age of 2, but hadn't had one since. We know there is some dysmotility going on - his esophageal bolus transit time is slow and the test in 2009 showed delayed emptying, plus he has the bloating and frequent bouts of uncontrollable diarrhea. The fantastic, amazing, wonderful nurse J suggested we might think about doing another GES. I am so glad someone is thinking about why his tummy is bloating/he won't eat instead of just trying to patch the problem.

If his emptying is normal, then maybe we can push the feeds a little more and help his tummy expand to accommodate the extra food. If his emptying is abnormal, there are other things we can do.

She changed out his Foley to a Mic g-tube. This was rather traumatic for Nolan, so we were glad to be past it and on our way out the door. Nolan was really unhappy for a while, poor kiddo. He was still upset over having to go through another tube change, and was also upset he didn't get a "button." We taped the tube to his skin really well, and that seemed to help him (he doesn't like the sensation of the long tube rubbing against his shirt or skin).

The g-tube is a standard PEG tube - the grandfather of the modern buttons. These are much cheaper than the button style (the hospital pays about $12 for them - we'd pay about $35 if we bought one on-line). The buttons are over $150 to buy online (and our former HHC was trying to charge us over $300 for the same item). Our insurance will cover the buttons now that we are feeding with them, so we should get a button in the mail soon.

We went to Panera Bread for lunch and Nolan was feeling much better.

We managed to really get the tube secured with tape. The life-saving Nurse J gave us an entire roll of tape before we left (really, I might send her flowers).

We ate lunch and then headed home. We made it home by 3:30pm, which is good because we have a birthday party tomorrow.

My house isn't clean. I don't have much planned or organized. Such is the life in a week of crazy - but hopefully our friends love us and won't care that we aren't having a "fancy" birthday party. Sometimes, it is enough to get together and simply enjoy each other's company on a happy day.