Tuesday, August 30, 2011

C-Pap Headaches

Using the C-Pap machine with Nolan is a real chore. The poor little guy has reflux so badly that the machine can't get through all the congestion in his nose, and the air blowing against his already-inflamed nasal passages causes him great discomfort. Listening to him cry in pain until he goes to sleep is simply awful.

And then he gets the bronchitis-sounding cough in the morning, and a very hoarse voice. All this from only using the C-Pap machine for 3-4 hours every night. I just don't think this is going to work for him.

We're persisting until we can see the Sleep Clinic neurologist on the 5th, because Nolan desaturates without the C-Pap. Of course, he is so congested that we doubt it is doing any good, but I need the doctor to see the congestion and hear his lungs. Docs tend to "get it" better when they can observe the actual effects, rather than simply being told about it by the parents.

The sleep issues have me worried, because Nolan starts school on Thursday. His teacher has been forewarned, thank goodness. Nolan frequently sleeps until 8:30am or later - and before anyone says, "WOW, I wish my kid did that!" keep in mind that Nolan desaturates constantly, and has "arousals" every minute of sleep. He wakes up, at least partially, at least 60 times per hour. This is why he sleeps until 8:30, and is still cranky as a bear.

When school starts, I have to get him up at 6:30am, so that he can have his Nexium at least 30 minutes before breakfast. Then I have to get him to eat (for Nolan, this usually takes 45 minutes), get the Zantac into him, set up his FM system, and get him to the bus stop in a fairly decent mood. I'm pretty sure the other things will be no problem, but the decent mood part is going to be tough.

I suppose we'll see what happens once school starts.

Monday, August 29, 2011

Letter to the Teacher

I was struggling with how to present information about Nolan's myriad issues without completely freaking the teacher out overwhelming the staff. I found a wonderful "Letter to the Teacher" on Life with the 'Tars, and copied the format.

Here is Nolan's "Letter to the Teacher" for this school year:

Hi! My name is Nolan. I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me.

I love going to school and playing with new friends! I really love stories and painting, and I know I am going to have a great year!


I don’t hear very well, and both of my ears have a moderately-severe hearing loss. I wear two hearing aids to help me hear better – I compensate for my hearing loss very well, but the presence of background noise makes hearing more difficult. Because of this, I also use an FM System in noisy situations: this system brings your voice directly to my ears. I hear better when people face me, and I do not hear as well when people are behind me or speaking from a large distance.


I wear glasses to help me see clearly. Both eyes have significant astigmatism, and my right eye is also nearsighted. I have amblyopia in my right eye, and cannot see very well out of that eye, even with glasses. Because of this, I sometimes have difficulties with depth perception (and may bump into things or appear “clumsy.” My eye doctor says I might need to start wearing an eye patch over my stronger eye – if that happens, I will have some difficulty seeing while patched. We are hopeful that the glasses will be enough to help me see!


Sometimes, I will get a bit “droopy” and complain that I am “out of energy” or “tired.” Sometimes I will complain that my legs hurt or that my tummy is sick. My mom and dad are not sure why I do this – usually a snack or some gentle encouragement will get me back into the swing of things. I usually do this in the afternoon, so hopefully this will not happen during my school day this year.


I don’t breathe very well at night because I have a floppy airway (laryngomalacia) which causes sleep apnea. Because of this, I use a C-Pap machine at night. The doctors are not sure if this will work, as it causes me to become very congested and sometimes causes my lungs to sound very congested. I am not sick, but I will frequently have a congested nose and rattling lungs. Sometimes I wake up very cranky in the morning, because I have had a very bad night’s sleep. We are currently looking into some other options to find a way to treat my breathing problems, but this is expected to remain a problem for the foreseeable future.


My stomach doesn’t work quite right. I have very severe acid reflux. The acid reflux is the reason I have had four sets of ear tubes, chronic congestion, and why I developed the floppy airway. I generally do not vomit, but I will occasionally gag and choke on reflux. When this happens, I often cough and my eyes turn red and water. These episodes are brief and I will be fine as soon as the reflux clears. I take very high doses of proton pump inhibitor medication, in addition to an acid blocker, and none of these medications are able to control the reflux.

I also have delayed gastric emptying, which varies in intensity. This means my stomach does not digest food properly, and empties too slow. On very bad days, my stomach hurts badly and I will not eat any food. Sometimes I will vomit the food I have eaten the day before, completely undigested. Most of the time, however, my stomach works well enough and I eat just fine. If I complain about severe stomach pain, this is the cause of the trouble!


I'm so excited to be in school this year and I know I will have lots of fun in your class!

Your new student,


Sunday, August 28, 2011


We spent the weekend forgetting IEP's, C-Pap, and all the other things that seem to be pressing down on us lately.

On Saturday, Nolan turned four. We went to a local amusement park, and had an absolute blast. I am fairly certain this child contains little of my gene pool, because he LOVES thrill rides. The child has no sense of fear!

We spent the day riding the biggest thrills a child of 40 inches could ride - and consoling our little man when he could not ride amusements with names like "Deathflayer." My stomach has not quite recovered from his love of thrills. He has opened presents, and eaten birthday cake. I still can't believe my baby is four.

We left off the C-Pap for three full days, and his voice has somewhat recovered and his lungs sound clearer. To really determine if the C-Pap machine is causing the issues with his lungs, we are starting the therapy up again tonight. Hopefully the lung issues were coincidental...

I have a meeting with Nolan's teacher tomorrow morning, and school starts on Thursday. Pre-Kindergarten, here he comes!

Thursday, August 25, 2011

Preparing for School

School starts next Thursday. There are the normal preparations to make, like purchasing school supplies, going to open houses, and choosing the perfect lunch box.

Then there are the extra preparations - the ones that involve educating and advocating for a little guy who can't explain his extra needs to the adults around him. I called Nolan's future teacher earlier in the week to set up a meeting. I need to show her his equipment and to give her the general lowdown on the little guy. She called me back very quickly. And gave me her home phone number.

We chatted briefly, and I set up a meeting for this coming meeting. Her final words?

"What can I do to help him succeed?

The best words ever spoken to a parent. She is a wonderful teacher.

I am trying to come up with information that is pertinent, but not overwhelming. I'm working on a simple "Nolan Information Sheet" to explain the relevant issues (vision, hearing, fatigue, choking and gagging). Some of the issues may not come into play very often - he only chokes on food occasionally, though the gagging is occurring at increasing intervals.

This teacher is going to be wonderful for Nolan. She loves art. She loves children. She has experience with special education and with the mainstream. She is amazing.

I know Nolan is going to have a great year in her classroom. I am very excited to see what this year brings!

Tuesday, August 23, 2011

Would You Like Some Butter with that Donut?

Nolan started eating again last night. He ate half his dinner, a string cheese, a banana, and ice cream. This morning, he ate a bowl of dry cereal and two cinnamon rolls. He's trying to make up for lost time, apparently. We're letting him eat whatever he wants - he needs to gain back the three pounds he lost over the past month.

I am very relieved that his digestive system seems to have returned from its rather long vacation. Hopefully his energy level will return with his stomach: the past month has been filled with days of "noodle-boy," where Nolan loses all tone and turns into a puddle on the floor. Sometimes, he falls asleep.

Mostly, he just whines and cries that he is "out of energy" or "tired." The chronic fatigue is worrisome to me, but I have a feeling it is tied into his lack of eating. He's still adjusting to the C-Pap, too - we're making it to about 2:30am most nights. Then he wakes up crying because it is hurting his nose. Still, it is progress!

This is the last full week of summer vacation before school starts. We have a slip-and-slide party planned, a play date at the creek, and lots of other fun activities planned. I hope the little guy's energy level returns so that he can really enjoy all the splashing and playing with the other kids!

Saturday, August 20, 2011

Enjoying the Rest of Summer

Nolan with a beefsteak tomato

I received Nolan's "Hello" letter from his new teacher in the mail. There are less than two full weeks of summer left - the time of playing in the warm sunshine is quickly coming to an end!

Since the week after school starts brings an onslaught of doctor appointments (sleep clinic, ophthalmology, and the Cleveland Clinic in a four-day span of time), we are making the most of our summer days. We went to a local pool yesterday, we're going to playgrounds this weekend, and next week will be spent slip-and-sliding, playing, and otherwise participating in non-educational fun. Summers are entirely too short.

As a side note, the new CPap mask is marvelous, but Nolan still won't keep it on all night. He wakes up crying, because the air is hurting his nose. Or the air is leaking into his eyes. In the middle of the night, we are bleary eyed and exhausted, trying to fix the air leaks and the hurt nose. Part of the problem is the chronic congestion Nolan gets from the reflux. Part of the problem is a flat nasal bridge. Part of the problem is trying to stick a confining mask onto a tiny child, who cannot really understand the implications of not wearing it (the only other way to fix the apnea is a fundoplication followed by a revision supraglottoplasty - something we are trying to avoid).

In the meantime, we are stumbling around like zombies from lack of sleep. We've never really gotten a full night's worth of sleep since Nolan was born, but at least we learned to sleep through him crawling around our bed at 2:00am. With the CPap mask in place, we repeatedly get up and go into his room to adjust it.

I am on the hunt for a full-face C-Pap mask for kids. That may solve his congestion issue, because the air pressure could be delivered through his nose and mouth while he sleeps. The other option is to put him in a bassinet next to our bed, so that we can take care of him without having to get up multiple times during the night.

Anyone who has been-there-done-that, what have you done to keep the mask on your child through the night? We need some tips!

Friday, August 19, 2011

Much, Much Better

The pediatric C-Pap mask I ordered off the internet arrived yesterday, and I was thrilled to find it was a nice, tiny size. The nasal portion fits over his nose and doesn't overlap onto his mouth. The head net is the right size for a small four year old, and the hose is on a swivel so that it doesn't bother Nolan as much in his sleep (the other mask had the hose in a fixed position on his forehead). Nolan kept this mask on for most of the night - he knocked it off when he got an air leak near his eyes. Still, he is getting much more time with this mask than the other one.

I know the need for a CPap at the age of three or four is pretty rare, but if anyone needs a good mask, the Respironics Child Lite mask is the one to go with. We got ours from Cpap.com for $99.
The only "negative" is that this mask makes a little more noise than the others (the other masks are silent), but I'll take some noise if the mask actually fits!

The next step will be to get Nolan to keep the mask on throughout the entire night. That actually seems like a possible feat, since we have a mask that actually fits the little guy.

Thursday, August 18, 2011

Why Our Only Pediatric C-Pap Mask Doesn't Work

The respiratory therapist has only given us one pediatric mask - this is the only one that truly fits Nolan.

Unfortunately, the mask is poorly designed: it only has two straps to hold it onto the face, so it frequently falls down. I frequently find Nolan in this position:

Obviously, having the head-net and mask wrapped around his neck is not the best idea in the world. For other C-Pap parents, this is the SleepNet MiniMe Petite CPap mask. It might work well for a non-mobile child, but I would otherwise avoid it. The retention system is terrible, and the designers did not consider the face and characteristics of a young child when creating this mask.

Every 10 minutes or so, I find him in this position and have to readjust him. When it is positioned correctly, it looks like this:

You can see there isn't much to hold it in place - just the two lower straps that fit under his ears. He can't get more than about an hour or two with the C-Pap working, because the mask just won't stay in place.

The pediatric mask I ordered online came in the mail today. It is smaller and has four straps to hold it in place. Obviously, our respiratory therapist is trying to pass off petite adult masks to save on overhead costs (she already has adult masks in stock and doesn't want to order a new mask in for Nolan). She tried to pass off the adult sized "EasyLife" mask as the "Child Lite" mask I had informed her of - unfortunately, she didn't realize that I could read (the side of the mask is labeled with the name and size, which indicate that it is NOT the mask we requested).

Thank goodness I was smart enough to invest the $100 and purchase our own mask from the online site. If you want something done right, you have to forge your credentials and do it yourself.

We are going to try the mask I ordered tonight.

We can't really judge the effectiveness of C-Pap therapy until we can get a solid night in with the machine!

Wednesday, August 17, 2011

Histories, DuoCal, and C-Paps - Oh, My!

Since our pediatrician didn't send all of Nolan's relevant medical records to the Cleveland Clinic, we requested specific records from his ENT and GI doctors. Yesterday, I received a bill in the mail.

Nolan's ENT charges $0.75 per page to fax medical records to other specialists. Nolan has 50 pages of relevant ENT records, so the bill comes to about $40 for faxing records to the Cleveland Clinic. I only wish it wasn't so difficult to get his medical records in the first place, because then we could have sent the records on our own and saved about $40. I'm not going to fight it - we only have one shot at getting this genetics evaluation done, so I mailed off the check yesterday. Hopefully the ENT's office will get them faxed in time.

Nolan's appetite has largely returned, so we are dropping DuoCal into everything we can. Fortunately, he loves macaroni and cheese, so hopefully we can get our little 29-pounder back to his baseline.

In the meantime, my frustration level is about 10,000 on a scale of 1 to 10. Our respiratory therapist is worse than useless. She had one C-Pap mask that is designed for children - the Mini Me mask. Unfortunately, the headgear and design of this mask is poor - it is only attached by two straps, so it frequently falls down and off his face during the night. This leaves the head-net and tubing around his neck - clearly, this cannot be very safe.

I looked online and found another mask designed for children, and I sent the respiratory therapist the link. She called us back in and handed me a mask - not the one from the web link I had sent her. The one she handed to me was an adult petite mask - it is too large for Nolan. She also gave us petite adult nasal pillows (these insert into the nose) with an adult head-net. It just doesn't fit the little guy.

The mini-me mask (left), adult nasal mask, and adult nasal pillows

I am beyond frustrated with this process. The respiratory therapist is either lazy or stupid: adult masks do not fit 29 pound four year old children. On top of this, the home healthcare company charges $275 for these masks that don't fit. I ordered a pediatric mask off the internet - it was $99 with free shipping. Hopefully the company will send the correct mask, and we will have a solution for our little guy.

Nolan has been asking for his "mask" at night - and he has bonded with the Mini Me mask. If only this mask would stay on for more than 30 minutes at a time, it would work out well. The overall design of the mask retention system is the real problem.

Hopefully the "Child Lite" mask that I ordered will arrive soon. Once we find something that stays on his face through the night, we'll be able to really tell if the C-Pap is working or not!

Monday, August 15, 2011

Back to "Normal"

I'm not sure what "normal" is, but Nolan is definitely back to his level of normal. He ate breakfast, lunch, and dinner today. He also ate popcorn and a piece of cheese for a snack. I am sighing a HUGE sigh of relief that he is able to eat again - there is nothing that turns me into a crazy-worry-wort mommy more than a little one who completely stops eating.

We're going to try the C-Pap again tonight.

Sometimes, I feel like a glutton for punishment. Hopefully Nolan will re-adjust to the mask and will fall asleep without any tears or fuss tonight.

Sunday, August 14, 2011

Breakfast, Brunch, and Brinner

Nolan's appetite picked up a little today. He ate dry cereal and yogurt at breakfast. He didn't seem very hungry for lunch, but we gave him french toast sticks and he ate a few of those - and then he had waffles for dinner. At this point, if he'll eat it, he can have it.

You know those people who always say, "Don't worry - a child won't starve himself?"


Turns out they're wrong.

Before I had kids, I had a list of things we would never do. We would never let the kids sleep in our bed. We would never make a separate meal for them. Lists and lists of "we would nevers."

Then we had a child who would, in fact, starve himself. A child who really does stop breathing at night. A child who not only lacks the sensation of hunger at certain times, but feels full to the point of nausea during these episodes.

He's down to 29 pounds (from a high of 32 pounds - he lost almost 10% of his body weight), but his appetite is coming back. If he wants waffles for dinner, he gets waffles for dinner.

We decided to hold off on C-Pap for one more night, to get him back onto a normal diet tomorrow. If he can eat some real food and keep it down, we'll start C-Pap again Monday night. He had more energy this evening, so things seem to be on the uptick.

In the meantime, I'm stocking up on french toast sticks.

Taking a Break

Friday was such a miserable day. Nolan wouldn't eat anything, though he seemed to be fine in every other way. His nose is congested, but it is always congested with the combination of reflux and the C-Pap machine. Friday, Nolan spent the entire second half of the day like this:

We decided to stop C-Pap therapy for the weekend to let him recover to his "normal" level of activity and eating. He ate a waffle on Saturday morning. Two bites of a grilled cheese sandwich at lunch. 3 bites of macaroni and cheese at dinner. We took him out for ice cream, hoping that would entice him to eat: no dice. He ate about 3 bites of ice cream before his stomach was "full." He did eat some kiwi fruit when we got home - he always prefers wet foods when the reflux/DGE gets really bad.

Apparently, his digestive system has decided to go on vacation.

He seems to be eating a bit more this morning. He has had dry cereal and wants some bread. Mornings are his best time for eating when he gets like this (his tummy has all night to empty), so we're trying to load him up with high calorie foods.

We haven't seen the delayed emptying really cause a problem since he was about 2 years old. For some reason, it seems to have made a return this week. Nolan seems a bit more perky this morning, so hopefully that is an indicator that things are speeding up in tummy-land.

We'll start C-Pap again tonight, to see if the C-Pap is causing things to get worse. If Nolan takes a plunge into the vomiting/congested world of not being able to eat, we'll have to take a longer hiatus from C-Pap therapy. I don't really see how the C-Pap could increase Nolan's motility issues, though - I really do think the flare of his issues is just coincidental with the start of C-Pap.

Now I'm off to go dump some DuoCal into a jar of yogurt. Hopefully he'll eat it!

Friday, August 12, 2011

Is This Week Over Yet?

Nolan has been having terrible flares in his reflux lately - last Friday he gagged and choked for two solid hours, and his eating really decreased. This week, we've had a lot of tummy pain and reduced appetite. Today, Nolan hasn't eaten anything.

Which is why I was surprised when he "baptized" the car with yesterday's lunch.

The car seat cover is now in the washing machine, Nolan has had a bath, and the car has been cleaned of the nastiness that was yesterday's lunch.

I'm so tired I can't even think straight. Nolan is fine, except for the whole not-eating tummy-hurting business.

This week can be over at any time.

There are a couple of bright spots.

  1. I found a better mask for Nolan made by Philips Respironics: it is made for children in the 15 pound-40 pound range. Nolan is exactly 30 pounds, so he should fit into the mask. It also has a forehead strap to help keep the mask secured. It is also only $99, so I bought one. I emailed the respiratory therapist (who has no idea what to do with a child as young as Nolan), so she bought one, too. Hers will be here faster, so we'll use it until ours arrives. Then we'll have her get a different mask for us to try out. That way we'll have two masks to rotate.
  2. Nolan's ear isn't leaking anymore. At least that is one thing we don't have to worry about this week!

Nolan is accepting the mask at bedtime, but he won't keep it on. There isn't much we can do about that, but wait patiently to see if he'll accept it over time. Arm restraints are another option, and we may have to resort to that if nothing else works - the "restraints" are also known as "no-no's," and are really just braces that keep kids from bending their arms at the elbows. This would keep him from forcibly removing his mask. I really don't want to have to do that, however. For one thing, he needs to be able to remove it if he is congested. Also, he vomits occasionally. So we can't have him throwing up into a C-Pap mask.

I am so, so glad we have our trip to the Cleveland Clinic scheduled for September 6. We really need some objective guidance on what to do with the little guy!

Thursday, August 11, 2011


We started CPap therapy on Monday night. Nolan whimpered a few times while putting the mask and hose on, but was surprisingly accepting of the whole situation. We read our bedtime stories, then he continued to look at some books until he fell asleep. He was conked out by 9:00pm, and I was relieved that it went so easily.

He woke up at 11:00pm, crying with the blowing air shooting into his eyes (he had dislodged the mask). He was fussy about the whole set-up by that point, and we figured 2 hours for the first night was good enough. We took off the CPap and let him sleep.

Then came Tuesday.

Terrible, terrible Tuesday.

Horrific Tuesday.

A too-big mask hangs over Nolan's upper lip.

He wasn't in a great mood on Tuesday. Maybe because he had slept poorly the night before. Maybe because his stomach has been acting up more than usual. Maybe because he's three-almost-four, and he just felt like being cranky.

Anyhow, he was not going along with the CPap plan on Tuesday night. We put the mask on at 8:00pm. He screamed. He hollered. He cried.

We tried loosening the mask when he cried that it was hurting him.

We tried adjusting the straps when he cried that it was "too tight."

We tried tightening the mask when air leaked out of the top of the mask.

It didn't matter, he just continued to cry. This was a night that I was so, so grateful to have a caring spouse. We took shifts in the boys' room, trying to get Nolan to calm down and trying to get the perfect fit on the mask.

When Dennis was upstairs and I was downstairs, Nolan would scream, "Mommy, HELP ME! HELP ME! Mommy, come here!"

It was awful. I was sobbing.

Is CPap worth it? Will it even work? Will he even accept it? Is this causing more trauma and torture than a surgical fix for his apnea and reflux? Would the "surgical fix" even fix the problem? What are we going to do?

I pulled myself together and traded shifts with Dennis. I put on my Calm Tough Mom face and sat next to the hysterical Nolan.

"Nolan, crying isn't helping. I can't understand what you are saying. If you want Mommy to stay in your room, you have to stop crying. I will read you a book, but you have to stop crying."

I doubted that would work with a three-almost-four year old sent over the edge of sanity by a scary air blowing mask. Surprisingly, it worked.

Maybe because it was 11:00pm and he was really tired.
Maybe because he was tired of fighting.
Maybe because he is three-almost-four and trusts his Mommy.

His hysterics calmed and he fell asleep. He stayed asleep until 2:00am. When he woke up crying, we took the mask off so he could sleep through the rest of the night.

Last night was Wednesday. We put the mask on and there were no hysterics. We read Ferdinand the Bull and the Research Guide on Pirates (to the Magic Tree House series). Nolan fell asleep as I was finishing the biography of Captain Kidd.

The lack of tears and drama/trauma were a welcome relief. Unfortunately, he kept knocking off the mask - every 15 minutes or so, the mask would be hanging loose from his face. There is no alarm when he knocks it off, so I stayed up until midnight to continually replace it, then went to bed. He woke at 1:30am with the mask dangling around his neck, crying.

We got about 2 hours of CPap therapy last night.

The respiratory therapist said the company that makes the toddler-sized masks has discontinued the "small" mask. Nolan currently has a medium sized "mini me" mask and headgear (this fits most preschoolers). Fortunately, the head gear does come in a smaller size. We don't have many options with regard to the mask: we could go to a full-face mask, but the danger of Nolan throwing up in the night into a full-faced mask is very real. We wouldn't want him to suffocate if he got ill in the night: if we try a full face mask, we will need an apnea monitor and alarm. Another option is to try arm restraints. I'm not a fan of that last option.

We have a month to try different configurations, but there aren't a lot of different options available for a child as small as Nolan. The popular "kidsta" masks found online are for kids over the age of 7: if Nolan can't fit into the medium "toddler" mask, there is no way the masks for kids "over the age of 7" will fit.

Anyhow, tonight is Thursday. We will soldier on and try the therapy again tonight. Hopefully, there will be no tears. Hopefully, he will leave the mask on in his sleep.

Hopefully, this will work.

Tuesday, August 9, 2011

The Cleveland Clinic: A Cut Above

I was a little worried when I noticed that only about a quarter of Nolan's medical records had been faxed to the Cleveland Clinic. Knowing that we only get one shot at this, I was concerned that the partial records would make for an useless appointment.

I sent in medical records request letters to our ENT, Pediatric Ophthalmologist, and GI doctor, so that some of the missing records would find their way to the Clinic.

Yesterday, the phone rang. It was the genetic counselor at Cleveland Clinic - she noticed that some of the records were missing from the pediatrician's office.

"There is a record mentioning an echocardiogram, but there is no echo. There is a record mentioning an MRI scan, but there is no MRI scan."

"Are there any endoscopy biopsy results? Labwork? Ophthalmology reports?"

"No. There is no mention at all of his vision problems."

"OK, I'll get on that."

There were 54 pages sent, probably about 1/4 of Nolan's medical records. I'm working on getting the rest sent directly from the specialists. The records sent to the Clinic were missing his genetic testing work from 2008 (just Connexin 26, Connexin 30, and mito A1555G, which were all negative for mutations). The records were missing all mention of vision issues, reflux test results, biopsy results, labwork, etc.

The rest of the records should slowly start filtering in to the Clinic this week. I will fax the rest of the missing records (early ABR hearing tests, genetic test results, etc) tomorrow.

I am SO impressed that the Clinic noticed the missing records and called me about them. I honestly don't think anyone has ever sat down and reviewed all of Nolan's medical records before.

We may never have a comprehensive diagnosis, but I am impressed with the attention to detail and the professionalism at the Cleveland Clinic. I feel like I can trust their judgment - they have really looked at his entire case and have seen kids like him before.

I really can't wait for our appointment next month. We may not get answers, but maybe we'll get get pointed in the right direction with our care of Nolan's most pressing medical concerns. Sometimes, getting pointed in the right direction is the most important thing.

Monday, August 8, 2011

C-Pap for Kids: Not Much Fun

Mr. Bear tries out the C-Pap

I took a little jaunt down to the Home Healthcare Company today - the respiratory therapist there set us up with Nolan's C-Pap machine.

She was rather flummoxed when she saw how tiny Nolan is: he is almost four, but he has that blasted flat nasal bridge and is on the small side for his age. There is a mask for toddlers, but the nasal mask is a bit too big. She is going to do some research online to see if she can find anything smaller (she can't - I've already looked). She did mention using a high-flow nasal cannula: this is what they do for premature infants, since they are too small for the typical C-Pap masks. We're not sure if this would work with an almost-four year old child's breathing method, though (infants breath entirely through their nose - a four year old is more likely to open his mouth and lose the pressure splinting open the airway).

Insurance will cover 50% of the machine. The rest will be paid by us, on a monthly basis. C-Pap machines are sold on a rent-to-own platform. Our first bill will be the highest, since that includes the disposable items like the hose, mask, filters, etc. Insurance will cover the rest. Maybe.

The "maybe" comes in the form of a little blue chip that sits inside the machine.

This chip is our police officer. It records exactly how long Nolan uses the machine each night. If he doesn't use it for a minimum of 4 hours each night, the insurance company will refuse to pay for the machine. Then we'll get stuck with the entire bill.

The monitoring chip was the brainchild of insurance companies, who got tired of adult patients requesting a C-Pap and then not using it because it is uncomfortable. Of course, children are a different scenario entirely. Due to other health concerns in young children, frequent congestion or colds may make wearing the C-Pap difficult at times. Let's face it: it is pretty rare for a 4 year old to require C-Pap, and most kids who do require therapy have complex medical issues.

So if Nolan gets sick on the C-Pap and can't wear it for a few nights, insurance won't cover any of the bill. Mr. Blue Chip says so.

He starts using the C-Pap tonight. We'll see how he does. He's been refluxing like crazy since Friday, and has a rattling cough. He may get too sick on C-Pap to make the entire enterprise feasible. In which case we can just stop the rent-to-own deal and we'll only be out $500.

Of course, if C-Pap doesn't work, we're left with a fundoplication and revision supraglottoplasty as our only options.

Despite the hassle and money involved, I really hope this works. We need our little one to grow!

Friday, August 5, 2011

Getting Things Ready for Cleveland Clinic

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

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

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

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

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

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

Wednesday, August 3, 2011

In Which I am Very Stealthy

Matt and Nolan at Library Story Hour.

This blasted ear infection is driving me crazy. It isn't exactly clearing up, and the ear drops are such torture for Nolan. I discovered a way to get the ear drops into him without any upset, though. I wait until he's deeply asleep, then I sneak into his room, put the drops near his ear canal, tip his pillow, and then hold my breath for 2 minutes. He fusses for just a second, then goes right back to sleep.

I have excellent ninja skills.

This tactic does not work in the early morning, however. When I try giving him ear drops at 6:00am, I end up with a howling, angry boy. Apparently, my ninja skills do not work during daytime hours.

Anyhow, his ear is still leaking some fluid and looks kind of nasty through the otoscope. I'm not a doctor, but I'm pretty sure "oozing" means "still infected." I'll give it until Friday (one week), then I'm either calling the pediatrician back or calling the ENT's office. I don't want a repeat of last year's 8 week long epic ear infection.