Articles I Have Written
- The Best Books for Kids with Hearing Loss
- Sleep Studies for Kids
- Adjusting to Hearing Aids
- Free Resources for Deaf and Hard of Hearing Children
- First Steps When Baby Can't Hear
- When Baby "Refers" on the Newborn Hearing Test
- Water Sports with Hearing Aids
- What is the Newborn Hearing Screen?
- The Best Hearing Aid Accessories for Kids
- Choosing Eyeglasses for Kids
- Great Hearing Loss Simulations
Tuesday, January 31, 2012
Nolan's surgeon called on Monday. Nolan's case had been presented to the GI team, and they reviewed all of his records. Nolan's reflux is very severe, but his records are a little confusing.
His initial tests (in 2009, prior to diagnosis) were:
Upper GI Barium X-Ray: Entirely Normal (normal anatomy, no reflux noted).
Gastric Emptying Scintiscan: Delayed Gastric Emptying (gastroparesis) noted, normal for reflux.
The other tests from the ENT's office included:
Pharyngeal pH probe, done ON medication (Nexium): significant airway reflux detected.
Pharyngeal pH probe, done ON medication (Nexium + Zantac): significant airway reflux detected.
Upper GI Barium X-Ray (2011): Normal anatomy, one episode of reflux noted.
Fortunately, the remainder of Nolan's tests from the GI doctor's office arrived. Those tests included:
pH Impedence Probe (dual channel): Severe reflux, slow bolus transit time.
Endoscopy with Biopsy and Pathology report: Reflux esophagitis with cellular dysplasia (Barrett's Esophagus).
Whether Nolan has delayed gastric emptying or not is completely insignificant now, because he has cellular changes in his esophagus - these cellular changes are very, very rare in children. The severity of Nolan's reflux, coupled with the respiratory symptoms, is enough to warrant a Nissen Fundoplication. With the cellular changes evident at the age of two, a Nissen Fundoplication is the only real way to proceed.
Barrett's Esophagus is a condition that predisposes people to cancer. The cells exhibit specific changes, and over the course of time, can turn into esophageal adenocarcinoma. The average age of diagnosis for Barrett's Esophagus is 55 years - in other words, the average person with Barrett's is a senior citizen.
Since children with this condition are so very rare, many GI doctors will not see a child who has these changes in the esophagus. I'm not sure how Nolan's original GI doctor missed it, or why she didn't ever do a follow-up endoscopy and surveillance biopsy, but I suppose the point is moot. The GI team at Golisano's saw it, and that is what matters. His GI care will be in Rochester now, anyway, so the little guy will be appropriately cared for.
The surgery (Nissen Fundoplication with Mic-Key button placement) has been scheduled for March 7 at Golisano Children's Hospital (part of Strong Memorial). The surgeon will do a repeat endoscopy with biopsy prior to the surgery.
If the biopsy shows that his esophageal cells have reverted to normal, then we can rest assured that the Barrett's is gone. If the biopsy shows that the dysplasia remains, then Nolan will be scoped and biopsied every six months for the rest of his life. If a scope shows changes in the pathology of the cells (advancing stages of this pre-cancerous condition), then further action would be taken at that time (I won't go into that now).
I'm still flabbergasted that our original GI doc never did a follow-up scope. I know the condition is very rare, but surveillance is mandatory with dysplasia - the risks are simply too high to ignore.
I'm also kicking myself, because this was one of the very few reports that we did not have a copy of. We still don't have an actual copy of the report - I only remember being told (verbally) that the pathology report showed "ectopic gastric mucosa" and "blunted villi," not having any idea of what those two things meant (and searching the interwebs for useful information with those words was futile).
The good news is that there is now a team in place to follow Nolan and to monitor the histological changes. I can't express how grateful I am that we made the decision to transition to Rochester for Nolan's care. And, hopefully, the new biopsy will show healthy, normal cells that haven't been altered by repeated acid exposure.
There are a few research articles on Barrett's Esophagus in children - I'm posting this here for my own reference:
Barrett's Esophagus in Children: Diagnosis and Management
Endoscopic Surveillance of Children with Barrett's Esophagus
Barrett's Esophagus in Children: A Study of 31 Children:
Monday, January 30, 2012
Nolan's ear was absolutely packed with gunk this morning. I called the pediatrician and managed to get in at 10:45am. The nurse practitioner was quite busy with sick kids this morning, so we weren't seen until 11:30. She took one look at Nolan's ear and prescribed Ciprodex drops AND an oral antibiotic. Thank goodness - this kid has a hard time beating ear infections, and hopefully we'll knock this one out in a week or less. We've been calling him One Ear for the past couple of days - it is amazing how much losing an ear really affects his ability to compensate for the other (hard of hearing) ear. We have to repeat things quite a bit more when one ear is completely gone, even when the "good" ear is aided.
Then it was time for Bumpy. Poor, itchy Matt. The nurse practitioner looked at the rash for quite some time, and couldn't decide if it was viral or an allergic reaction. The problem is that the rash looks viral when it starts off - lots of single, itchy, pimply bumps:
The rash is also spreading like a virus - only on the extremities and not over the entire body.
After the rash has been in place for a day or so, though, it turns into welts. Which look like an allergic reaction, not a virus.
A second pediatrician was called in to take a look. He said (and I quote), "Now there's a puzzle."
We don't really know what it is, so they said to keep him on Benedryl every six hours, and to keep him cool (heat can make allergic welts worse). So no school tomorrow and no hockey tonight, at the very least. If the rash gets worse in any way, we're to call immediately.
I hope it just disappears so we can forget about it.
We then went to Rite Aid and played "Have Fun at the Pharmacy."
Fortunately, my kids are easily entertained and think that a water cooler is the coolest thing on earth. Antibiotics (for Nolan) and Benedryl (for Matt) in hand, we went home. They're hanging out and enjoying the day off school - and Matt is thrilled that he gets a bonus day off.
The pediatric surgeon also called this morning, but that's enough material for another post (or two), so I'll save it for tomorrow. At least we have Bumpy and One Ear on the path to wellness!
Sunday, January 29, 2012
This picture sums up our weekend:
Nolan has another ear infection.
In other news: Grass is green! Rain is wet! Dogs bark!
Acid Reflux, I hate you.
When it rains, it pours. Matt hasn't been "well" lately, either. He's had a molluscum infection for approximately... forever and developed staph infections in several of the lesions. He was cultured to see if it was MRSA (the methicillin resistant staph bug that can be particularly nasty), and the results came back as regular, plain old staph. I never thought I would be happy for a staph infection, but there you go.
The worst boils were lanced and he was placed on Bactrim, a rather strong antibiotic. The boils healed, though the underlying eczema and molluscum infection are still going strong. On Friday night, I noticed that he had a few more bumps than usual on his legs. Was he getting a virus? I posted a picture on facebook so everyone could play "guess the rash."
The poor kid is itching like crazy. Ideas like chicken pox (he's been vaccinated) and Hand Foot Mouth Disease (though HFMD doesn't itch) were brought up by the Almighty Google. The welts began to swell and spread, and I started suspecting an allergic reaction. By Saturday morning, it was on his hands arms, in addition to his legs and spreading up to his waistband.
His knees and elbows are particularly bad, and are one giant coalescence of The Great Itch.
The good news: a new urgent care opened up in our community. The bad news: the urgent care is closed on Sundays!
We are giving Matt lots of Benedryl and applying caladryl lotion to the welts.
I am calling the pediatrician in the morning to get both boys in - I hope they have some sort of two-for-one deal going on.
Friday, January 27, 2012
We picked up Nolan's new glasses today. This pair has the cable arms that we love so dearly, and fit his little face a lot better than the online glasses. They're Disney frames, so Nolan is quite excited to have "Mickey Mouse" glasses. There used to be tiny Mickeys on the end of original arms, but the Mickey Mouse emblems had to come off to put the cable arms on.
We have kept the glasses purchased online for a "back-up" pair, but hopefully we won't need them!
Wednesday, January 25, 2012
Nolan's new ear hooks came in the mail yesterday - I was rather relieved to put the new hook on, as the other (broken) hook was rather loose. When the little guy had his tantrum last week, he had snapped through the threads - while the hearing aid was still usable, I was in constant fear that it would fall apart at school and that we'd lose a hearing aid! The new hook is nice and secure.
I called the pediatric surgeon's office yesterday to make sure all of Nolan's records had arrived. I knew his scans from the ENT were already there (they were what prompted the surgeon's phone call two weeks ago), but I wanted to make sure the pH probe, biopsy, and pathology report had arrived from the GI doctor's office. Everything has made its way to his office, so we should hear back on "The Plan" soon. The next step will probably involve another consultation with the doctor prior to surgery (if surgery proceeds) and will definitely involve another gastric emptying scan. In the meantime, I continue to bake and eat pastry. I hope things get settled before another week passes, because I am starting to measure the waiting time in pounds gained.
Monday, January 23, 2012
Nolan came home from school the other day, bubbling over with excitement.
"Mom, we need to go to LONDON!"
Since that isn't a phrase expected out of the mouth of a four year old, I just stared and him and repeated, "London?"
"It's a CITY! A big city!"
I was surprised he knew about London, since we haven't exactly studied world geography yet. I asked him what he knew about London.
"It has bridges, Mom. I need to see the London Bridges. They're falling down. In the RIVER!"
London Bridge Is Falling Down.
"Nolan, did you know that Mommy and Daddy have been to London?"
Eyes wide, he said, "Did they take a key and lock you up?"
I took out our photo albums and explained that the river in London is called the Thames, and that the bridges are not currently falling down. I also explained that they aren't locking up any "fair ladies" at the moment.
A bridge in London - not falling down
He seemed rather disappointed. Apparently, he considers watching bridges crash into rivers a ripping good time. Especially if a few ladies happen to get locked up in jail at the same time.
I have a feeling that England will be on the Future Vacation Plan list for Nolan. The Tower of London sounds right up his alley!
Thursday, January 19, 2012
This is one of my least favorite places to be.
Waiting for records to be mailed.
Waiting for the phone to ring.
Waiting for decisions to be made.
I send the consent form to the GI doctor on Saturday, so they should be receiving the form in the mail today (if they haven't received it already). Hopefully they'll fax Nolan's records to the surgeon quickly - I want to know what the GI team at Golisano Children's thinks, and what we need to do next.
I don't like the aimless feeling of not knowing what is going to happen next: I cope better when we have a solid plan in place.
In the meantime, Nolan is doing great. He's eating like a champ - on "off" days, he eats mostly yogurt and grapes, but he makes up for it on good days. His nose is filling up with the yellow-green stuff again, but he isn't too congested. He has had a few dizzy spells over the past few days, and I'm not quite sure what to make of those. My best guess is something vestibular, but who knows? He claims the earth is spinning and falls down or staggers a bit. I'm keeping an eye on those - he seems fine otherwise, so hopefully the "spinny" will just disappear and we won't have to worry about it anymore.
Now I'm off to eat some chocolate bars, because chocolate is a very healthy way of dealing with stress.
Tuesday, January 17, 2012
I tried ordering glasses online for Nolan, to save a little money and to get them quickly over the Christmas holidays. With his amblyopia, I want to make sure that we stay on top of prescription changes so that his right eye continues to improve.
Unfortunately, ordering online is really hard with kids. Most sites don't allow you to sort by specific frame size, and what an online site claims is a "small" frame is really a frame that might fit a ten year old. There aren't many frames for small preschoolers online.
I found some "Badger" frames at $39 Eyeglasses and bought them because they were one of the only pairs with a 120mm temple length. The glasses arrived and they were simply too big. The temples were much longer than 120mm (closer to 125mm) and they just didn't fit our little guy's face. This isn't really the fault of the online retailer - small preschoolers can be hard to fit.
I called our local optician's shop the other day and went in to look for glasses that would fit Nolan. He's so small that only ONE pair fit his small face - a pair they had in a drawer underneath all the display glasses. He almost wears an infant sized frame. His new glasses (a Disney frame, with tiny gold Mickey Mouse emblems on the temples) will be ready in a week or two.
We also found that his PD (pupilary distance) had changed in the past six months - not a huge change, but it went from 50mm to 51mm. Getting a proper PD measurement is critical to fitting glasses, so I'm glad I took him in. I tried measuring it myself, but if you have ever tried to do this with a four year old child, you know it is impossible.
In the meantime, the optician adjusted Nolan's online eyeglasses to help them fit better. They're staying up much better since the adjustment. They're still slightly too big (you can see how the lenses are a bit too wide for his face), but at least he's looking through the lenses again.
I learned my lesson - I won't buy online again (for Nolan) unless it is just for sunglasses. In the meantime, we're very grateful that our local optician bent the temples around his ears and fixed the nose pad to keep his current glasses on his face!
Monday, January 16, 2012
The other day, Nolan had a temper tantrum. When Nolan has a tantrum these days, he usually removes his glasses and hearing aids, throwing them across the room. This is actually an improvement from the days when he would remove his glasses, hearing aids, shoes and socks for a fit.
Unfortunately, this last tantrum involved pulling his hearing aids off and then snapping them in half. The clear, hard plastic part that screws into the hearing aid body is the part that snapped (this is called the tone hook).
Fortunately, I don't think tone hooks are very expensive.
Still? I'd really appreciate it if the little guy would refrain from breaking his equipment during tantrums.
Here's to hoping they can simply send a new one in the mail!
Friday, January 13, 2012
When we had our consultation with the pediatric surgeon, we brought up the fact that Nolan had shown delayed gastric emptying on an earlier test (called a scintiscan). The surgeon reassured us that the majority of kids with reflux appear to have delayed gastric emptying because the food goes up as well as down, resulting a a delayed time. Once the fundoplication is performed, the food can only go down and motility "improves." This was a reassuring thought and we figured the delayed emptying was simply an artifact on the test because of his reflux.
When Dr. Wonderful called me at home the other night, he told me to forget everything he told me about motility. The aforementioned is true for kids with regular, straightforward severe reflux. It is not true for Nolan.
Motility issues have brought everything to a grinding halt.
From the few tests that have been performed, it is apparent that Nolan has two motility issues (one definite, the other possible):
1) Delayed Gastric Emptying, or Gastroparesis
2) Esophageal Motility Problems
Nolan's scintiscan showed 0 episodes of reflux, but significant delayed gastric emptying. In this case, there was no reflux to create a "false positive" result. He truly has delayed gastric emptying, and it is possibly the underlying cause to the ridiculous levels of reflux.
Nolan's 24 hour impedance probe (from when he was 2 years old) showed a slow "bolus transit time" in his esophagus. This means that food took too long to get from his mouth to his stomach.
So, why are motility problems important?
If Nolan had a Nissen Fundoplication without addressing the motility, several things could go awry. His stomach would not empty fast enough, and with the top of the stomach "tied off," he could get painfully bloated. The potential esophageal motility issues are more worrisome - with a Nissen, a child could actually lose the ability to swallow food if there are esophageal motility problems.
We are going to have a repeat gastric emptying scintiscan done at Golisano Children's Hospital. If he still shows gastroparesis, then a pyloroplasty will be performed alongside the fundoplication. A pyloroplasty is the same surgery as performed on children with pyloric stenosis - it is a cut into the bottom sphincter of the stomach to allow food to empty faster. This comes with its own set of risks and benefits, which is why they don't perform this routinely with Nissen Fundoplications - it is reserved for kids with gastric emptying problems. A g-tube is always used for kids with delayed emptying with a fundoplication, to allow venting of stomach contents or air, in the event that the stomach can't empty itself fast enough.
There isn't much to be done about esophageal motility problems. This is usually an absolute contra-indication to a Nissen fundoplication. There is a test for esophageal motility, but it is quite invasive (the test is called esophageal manometry).
Anyhow, there are a few decent articles on motility problems in children. I'm linking them here for my own reference, but also to help others understand the difference between "typical reflux" and "reflux with motility issues."
http://www.articles.complexchild.com/00005.pdf: A great, plain-English description of various motility problems in children.
http://www.articles.complexchild.com/00028.pdf: A great article about the difference between "regular" reflux and reflux with motility issues.
http://www.nature.com/gimo/contents/pt1/full/gimo46.html: An article about the difference between LPR and GERD types of reflux (Nolan has LPR reflux)
Article on gastroparesis: http://www.usagiedu.com/articles/gastrop/gastrop.pdf
And then there is this little gem, about understanding the surgical treatment of reflux in the presence of delayed gastric emptying: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422000/
"the existence of delayed gastric emptying should not be a contraindication for a Nissen fundoplication. Second, those who do operations other than a Nissen fundoplication for the treatment of reflux may wish to consider a fundoplication in the group of patients found to have abnormal emptying, as this operation is the only one that clearly improves gastric emptying. Third, in patients with delayed emptying the surgeon should not advocate a pyloroplasty, but simply a fundoplication. This recommendation, while indirectly supported by the results of this study, stems from a number of other observations. First, pyloroplasty increases duodenogastric reflux, which may damage the gastric mucosa or worsen esophagitis if the cardia remains incompetent. Second, pyloroplasty without vagotomy is ineffective in the treatment of idiopathic or diabetic gastroparesis regardless of its effects on gastric emptying. Lastly, this study and the preponderance of evidence from other studies suggest that there is a good chance that gastric emptying will be normalized after a Nissen fundoplication. If that does not occur, there is always time to reassess the situation and devise a new strategy to deal with the problem."
Wednesday, January 11, 2012
Another picture from the Strong Museum of Play
Nolan's surgeon just called. I've never had a doctor do that before.
The crux of the conversation? Nolan is weird.
Not the child, of course, but the medical history and test results.
He was looking at the upper GI bariums, which were normal (barring one episode of reflux). And the gastric emptying scintiscan, which is normal for reflux but shows delayed gastric emptying. And the two pharyngeal pH probes, which were done while Nolan was on medication.
He doesn't have the original esophageal pH probe or the biopsy report.
And so we have some issues.
Since the scintiscan shows delayed gastric emptying in the absence of reflux, a pyloroplasty would be performed along with a Nissen - it is likely his problems are primarily motility related.
He's also concerned about some cellular changes that are casually mentioned in one report. If true, he would need serial monitoring.
And the pharyngeal pH probes are rather cutting edge- since they aren't generally used in the pediatric population, he's putting those aside for the moment. Nolan obviously has airway reflux - heck, he CHOKES on the stuff, but the pharyngeal probes were done on medication and he'd rather have a traditional pH probe.
I will fax Nolan's original pH probe study to the surgeon tomorrow. He'll have to wait a bit longer for the esophageal biopsy results and the pathology report, because I don't have physical copies of those. I have to wait until we get the consent form from the GI doc and then I'll mail it back - once I do that, the GI doc will fax the medical reports directly to the surgeon.
So we aren't scheduling surgery yet. Things aren't so straightforward as the surgeon originally thought, and he's concerned there is some bigger, underlying issue with the progressive nature of the reflux and airway. His exact words were,
"These kids aren't always what they seem. We're learning more about them all the time and sometimes there's something bigger."
Great. I seriously don't want something "bigger."
On the other hand, what an amazing, wonderful, incredible doctor. Taking time at 6:00pm to call a parent to get clarification on medical reports that he is ACTUALLY reading. Trying to figure out the mystery that is Nolan.
Since the regular esophageal pH probe was done when Nolan was 2 years old (along with the gastric emptying scan), he really wants them to be repeated. Which would mean pH probe #4 for the little guy (this time an esophageal one, like the original probe) and GES #2. He would also like another endoscopy/biopsy to look at the little guy's esophagus.
But he's going to talk to the GI team at Strong Memorial first, to get a consensus. And he wants to review the other records.
Looks like things are going to be topsy-turvy for a while.
Our insurance policy changed at the beginning of the year - not a big deal in the scheme of things, but we knew there would be a few snafus, particularly with so many providers and a medication that requires pre-authorization.
To head off problems with the little guy's medications, I called in his Nexium prescription early. Unfortunately, it was too early, so I had to wait to call it in. I tried again a week later, and it was still "too early." At this point, we only had 6 packets of Nexium left (3 days' worth), so I became a little concerned.
I called the next day and Rite Aid miraculously had Nolan's prescription in-house. I figured it was the result of some system error on their end, but at least his medication was available for pick-up. The pharmacy technician rang up the medication packets, and the total came to $900.
I looked at her and said, "Um. No."
She looked at the documentation stapled to the medication and it said, "individual not covered on plan."
I handed her our insurance card and said, "He's covered. We've used this card several times over the past few weeks and he is listed as a dependent."
Rite Aid had me wait for about 40 minutes as they called the insurance company. Our insurance company told Rite Aid they were too busy to take the call. Rite Aid gave up.
Which meant, of course, that my child didn't have the medication he needed.
I called Dennis at work and he looked at our insurance information online - Nolan was most certainly listed. Of course, our insurance company is having a huge battle with something known as competence: the "start date" listed on our cards was in error (the cards stated 02/01/12 as the effective date, when the real effective date was 01/01/12). The insurance company also had Matthew's name written down as "Motther." I suspect they have outsourced some of their labor. Still, the problem wasn't on the insurance company's end - it was on Rite Aid's.
In any case, I finally managed to get 3 packets of medication from Rite Aid, enough to cover Nolan for one more day.
I called this morning to see if they had sorted everything out, and the pharmacy tech said,
"We don't handle insurance issues. You have to call your insurance company."
I took a deep breath. It was a good thing I was at home and on the phone, or I would have started screaming. Mentally, I thought: "You imbecile! It is your problem, not the insurance company's! I can't fix your system, which is obviously malfunctioning!" Since this wasn't very nice, I didn't say it out loud.
I managed to say, "Talk to the pharmacist. See where the medication is. Then we might not have a problem, OK?"
She checked with the pharmacist and the medication is ready, all for the normal Co-Pay. They had obviously fixed their "system error" that was causing Nolan to appear as if he wasn't covered by insurance.
While we're stuck with our insurance companies and the battles that entails, we are certainly NOT stuck with a particular pharmacy. As soon as I feel the energy level, I'm switching to a different one. We certainly don't need added hassles to the regular difficulties in life!
At least Nolan will get his medication tonight. Sheesh.
Tuesday, January 10, 2012
At the Museum of Play
We drove up to Rochester on Sunday, a day before Nolan's pediatric surgeon appointment. Rochester has a few kid-oriented museums, so we went to the science museum on Sunday and the Strong Museum of Play on Monday morning. Nolan and Matt had a blast, and we really enjoyed making time for some fun amidst the stress of the surgeon appointment.
The appointment was at Golisano Children's Hospital, part of Strong Memorial Hospital. Every time I go through Nolan's history, I realize how long it is. And I always forget something - though I was fortunate to have Dennis with me this time to help fill in the gaps. I do have his history typed up in a nice word file, but somehow managed to forget it on this trip (argh).
The surgeon did ask us why it had taken so long to get a referral for a fundoplication - with Nolan's symptoms, airway involvement, and severity, he should have had a Nissen quite some time ago. We had to explain that we (the parents) were the cause of the delay - his ENT wanted to refer him for surgery quite some time ago, but we wanted to exhaust every other avenue prior to doing this surgery (which, frankly, scares the bejeebies out of us).
The surgeon explained the procedure and how the fundoplication works - the fundus of the stomach is wrapped around the esophagus, and when food enters the stomach it fills the wrapped fundus, exerting pressure on the esophagus to keep anything from going UP.
We discussed our concerns, namely the idea that the surgery couldn't be "undone" if there were problems (he told us this was not true - while it is generally not "undone" because the person really needs it, a Nissen wrap can be taken down if necessary).
We also discussed things like gas bloat, wretching, and other scary, unpleasant side effects that can come with a fundoplication. Nolan is at risk for gas bloat, for a couple of different reasons:
1) He uses a C-Pap to breathe at night. This forces air down his throat, and sometimes that can get forced into the stomach.
2) He has delayed gastric emptying
Since Nolan is "complicated" and a little on the small side, it is common to insert a gastrostomy tube (g-tube) when the fundoplication is performed. If his emptying becomes a problem after surgery or he gets horrible gas bloat, we will be able to vent his stomach to release the trapped air (or stomach contents, in the case of delayed emptying). The g-tube can also be used to deliver medication and nutrition, if needed.
The type of gastrostomy tube that will be placed is called a "Mic-Key." A lot of people simply refer to these as a "button" or a "mickey." It is a small, skin level device that won't interfere with the little guy's daily activities, and if he doesn't need it we can have it removed.
The surgery (for the fundoplication) is done laprascopically, though sometimes the surgeon has to convert to an "open" procedure. From my basic understanding, this has a lot to do with visibility and how the liver covers the operating site.
The surgery requires a 5-7 day stay in the hospital following the laprascopic procedure, and a 7-10 day stay for an open procedure (we're really, really hoping the surgery can be completed laprascopically). While he's in the hospital, I will be trained on g-tube care and how to replace it if it should fall out accidentally. This is a big issue because our local hospital doesn't treat kids and lacks the necessary supplies - and a tube that falls out has to be replaced immediately.
If Nolan doesn't need the tube for venting and is eating well, the tube will be removed about 3 months after the operation. Removal is simple - you simply deflate the retention balloon, pull it out, and stick a bandaid on it - the wound heals in about 2 days.
There is also a restricted diet for a while and the recovery does take some time, but once everything is settled he should be free from reflux-related problems.
In the meantime, we are having his GI medical records sent to Strong Memorial. Since Nolan is "medically complex," the surgeon wants to be absolutely sure that there are no big contra-indications to the procedure. Once he has all of the records and verifies that the procedure is safe, the surgery date will be scheduled. We signed the consent form in his office, so we are simply waiting for the records to get sent and reviewed.
Saturday, January 7, 2012
Wednesday, January 4, 2012
The picture is from yesterday, but since today was basically a repeat of yesterday, I'm posting it.
The dental hygienist cleaned the tooth and we were able to get away with NO drilling. A huge relief to me (and to Nolan, too, though he doesn't know it). She dried the tooth, put the sealant over the soft spot, and sent us on our way.
For 10 minutes and $25, this was probably the easiest and cheapest dental appointment we've ever had!
Since we don't ever want to go a day without a doctor appointment, Matt's Molluscum decided to get very infected. The poor kiddo has boils all over his legs where the Molluscum lesions were. I'm calling the pediatrician tomorrow to get him in, because one looks extremely angry and infected. If you don't know what Molluscum is, be thankful. It's a pox-related virus that preschoolers get (and the incidence is increasing). They measure the infection time in years and the pox lesions spread during that time. Nolan got the virus from his brother, but fortunately hasn't had any of his lesions get infected. Both of my boys have eczema, and apparently the two don't mix well.
Nolan will be thrilled to be the one NOT going to the doctor's office, I'm sure. Judging from Matt's reaction to the dental X-ray machine, I suspect Matt will not be very cooperative for the pediatrician. Ugh.
Tuesday, January 3, 2012
I took both kids to the dentist today, and Nolan chose to go first. He climbed into the chair and let the hygienist clean and count his teeth. He is amazingly good at the dentist, probably because having teeth cleaned is a walk through the park compared to some of the things he goes through at the ENT's office. The dentist came in for a look, and both discussed a "soft spot" on his enamel that looks like acid damage.
"Does he have acid reflux?" they asked me.
Boy, does he ever. Words couldn't convey how severe his reflux is, so I just nodded my head.
I'm actually surprised that he's avoided dental issues with the level of reflux he has. Fortunately (for dental reasons) the airway reflux is less damaging to teeth. Still, his very breath has acid droplets in it and that eventually causes damage. He's also a tooth grinder, so his teeth are wearing away in the back. Lovely.
I get to take him back in tomorrow for his first "filling." They're actually billing it as a "sealant" because that is cheaper - we don't have dental insurance and the drilling will be minimal. They may be able to get away with no drilling, and simply seal over the soft spot. I am fervently hoping they won't need to drill. Fortunately, we caught the small area of decay early before it had a chance to do any real damage.
Of course, Matt was next. He was NOT so easy. They wanted to get his first set of dental X-rays, and Matt refused. This was as close to the machine as he would allow himself to get.
He balked at the machine for a full forty minutes. Forty. Minutes.
I would have given up long before those hygienists did. I'm pretty sure they're angels or something. They finally got Matt to bite the yellow stick and hold still for 15 seconds. We got the X-rays. His mouth is beautiful - no cavities! His adult front teeth are right there and should start to pop through soon. He has something they called "buckling," which I had as a kid, too. His adult teeth are coming in BEHIND his baby teeth. Mine did the same thing - I walked around with a double row of teeth for a while. It was kind of cool in the "I have shark teeth" sort of way.
They may have to pull his baby teeth if they don't loosen on their own - hopefully that won't be necessary. Because after the trauma of the dreaded X-Ray machine, I don't think any of us would live through a Pulling of the Teeth.
I think I owe those two hygienists chocolate. Or dinner out. Or a vacation to Hawaii. They put up with a lot today.
Nolan goes back in at 2:00 tomorrow afternoon. Matt, fortunately, doesn't have to go back in for another six months.
Monday, January 2, 2012
Grandpas are fun
After a remarkably mild November and December, snow has finally descended upon Western NY. We had a wonderful (rainy) Christmas with Dennis's parents, and the boys were glad to have time off from school.
Nolan has been doing quite well lately - no real nausea and only the occasional cough/gag over the past couple of weeks. His nose is running with the sinusitis that accompanies the LPR reflux, though - I don't think we've had more than 2 days free of sinusitis since last September. He has managed to wear his C-Pap all night long for two nights in a row - a record!
His ears are clear, and his hearing actually seems to be better than it has been in a long time. I know his audiogram is probably the same, but he's responding to sounds unaided, and he hasn't done that in a long time. I sometimes wonder if the reflux causes inflammation or other issues with his hearing, particularly with the sinuses involved.
Both boys go back to school tomorrow, and we will get back to our normal schedules. Nolan has his earmold pick-up scheduled for Friday, and then we meet with the pediatric surgeon to discuss the possible fundoplication on Monday the 9th. The travel won't be bad as long as the snow stays away - the drive to Rochester is 3 hours long and the threat of lake effect snow plays a number on my nerves. Hopefully Mother Nature will cooperate and give us a few days off from the onslaught of winter!
Here's to a Happy New Year filled with healthy and growing children!