Matt's pH Probe Results

In November, we received a call from our ENT's office with Matthew's pH probe results. The probe shows he has severe nighttime reflux - over 109 episodes while he was asleep. This explains his frequent apneas and sleep arousals, which results in very little REM sleep.

Coincidentally, we had noticed a lot of behavior problems starting in October - I didn't make the connection at the time, but we took him off his anti-reflux medication prior to the pH probe. In hindsight, his emotional meltdowns and ADD type behavior was directly caused by the increase in reflux when the medication was removed.

The probe was extremely valuable for a number of reasons, including:

1. We know he has acid reflux affecting his airway, as opposed to other conditions that can mimic reflux.
2. We know he doesn't reflux during the day at all, but has severe reflux when sleeping.

The second point is particularly important. Originally, Matthew was on a low-dose (10 mg) of Prilosec, given once per day in the morning.  The information gained from the probe gave us the ability to medicate his GERD more appropriately: he is now on 40 mg of Nexium, given in the evening.

Once we started the Nexium, the turn-around in his behavior was phenomenal. He is no longer melting down on a regular basis, is able to focus, and is able to reason again.

We return to the ENT's office on February 5 to discuss his progress and determine what the next step should be (likely another sleep study to keep tabs on his apnea).

I have been absent from this blog - I am now working outside the home part-time and life is insanely busy! It is a whirlwind of work/school/tennis/piano/ski club: all positive, wonderful things, but writing has been placed on the back burner!

I will update on Nolan in another post - Happy 2014, everyone!

pH Probe for Matthew

We drove up to Buffalo again this morning to have Matt's pH probe placed. His supraglottoplasty failed and he still has sleep apnea, so we need to work out the reasons why he still has poor sleep and respiratory issues during sleep.

During his last laryngoscopy, his airway was very red and inflamed. Since he has the laryngomalacia, a presumptive diagnosis of reflux was made and he was placed on Prilosec. A very conservative supraglottoplasty was done (just trimming one floppy side instead of both).

Since he still has apnea, we need to accurately determine if he has airway reflux before considering any further steps. Since he has never been formally tested for reflux, we were told to take him off his anti-reflux meds a month ago. This morning, a probe was placed to detect reflux in aerosol form in his upper airway.

Placing the probe was, of course, an awful ordeal. No child wants to have a tube placed up their nose and down their throat. I won't go into detail, but let's just say that four nurses were involved, along with a papoose board and a lot of tears. Fortunately, the probe was placed quickly and in one try. Once it was in, Matt was fine.

We went home and he's been building a big Lego airplane we bought for him. Thank goodness for Legos.

We return in the morning to have it removed. I haven't actually seen any reflux events, so it will be good to determine if he actually has reflux or not. If he doesn't, then he doesn't need to take medication for it. In addition, revision surgery for his airway would be much less risky.

We'll see what the data shows.. we will get the results on December 4.

October Update

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

I have several very good excuses for not writing:

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

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

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

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

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

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

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

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

Phone Call

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.

Good Enough

After driving through lake effect snow, getting stuck in one parking lot, and making it up to Amherst with two cranky children, we have our answer:

"Good enough."

Even on the maximum dosage of Nexium (PPI drug) and Zantac (H2 blocker), Nolan still has some breakthrough acid reflux. The results, however, are "good enough" to proceed with the airway surgery (supraglottoplasty) on Tuesday.

It seems weird to say, "Yay, he gets to have surgery!" At least we get to take care of the breathing issue and we can slay the reflux dragon on another day. Hopefully the meds will keep him stable for a long, long time, because the alternative to medical therapy isn't very nice (an operation called a nissen fundoplication, that generally results in a G-tube). Unfortunately, with his level of GERD/LPR reflux, that surgery looms over our heads. We plan on doing everything we can to avoid it!

I've always been highly reluctant to give the kids medication. I never thought I'd say, "Drug him up!" to a doctor, but when the alternative is an irreversible surgery with some potentially nasty side effects, we'll take all the drugs he can handle.

Cautiously Optimistic

I kept a sharp eye on Nolan's pH meter last night, and it was generally above 6.0. Hopefully, this means he'll pass the probe, though I won't know for sure until the data is downloaded and reviewed by our wonderful ENT.

Nolan willingly put on his "no-no's" before bed last night, and we made it through the night with the probe still in place. An extra slathering of tape on his face didn't hurt, either. If you ever have to do a pH probe, button down shirts and the "no-no's" are essential.

Nolan models the "no-no's"

Fortunately, the snow is supposed to slow down today. Traveling in lake effect snow just adds another dimension to the medical "fun."

No need to dig out the mailbox- yet.

The weather cats (wisely) stayed inside this morning.

We are heading up to Amherst in about half an hour, to have the pH probe removed and to (hopefully) have the data reviewed while we're still in the office. Typically, there is a two week wait for the results from a 24 hour pH probe. Since Nolan is scheduled for major airway surgery on Tuesday, we need to know a little sooner than that!

Lull in the Storm

The lake effect snow stopped for a brief period of time- just long enough to get up to Buffalo, place the pH probe, and get back home. It is coming down fast and furious again, so I am very glad we managed to get home before it started coming down again!

The other weather cat indicates the snow has stopped falling- for now

As far as the placement goes, this one was harder in some ways and easier in others. Nolan knew what was coming, and was inconsolable in the examining room. Once they shoved the lidocaine coated cotton up is nose, he was howling. In case you can't guess, this is about a 15 on an awfulness scale of 1-10.

Once we took him to the procedure room, he was clinging to me and screaming. Then it took a couple of failed tries in the right nostril, more cotton/lidocaine in the left nostril, and a final successful placement of the probe on that side. Sidenote: if you can avoid having to do a pH probe, I highly recommend avoiding it. Frankly, it sucks.

The "better" part is that Nolan calmed down while we were trying to place it and actually listened to the nurse practitioner telling him to swallow. He would cry, gulp, cry, gulp, and finally the probe was taped in place. We were done, and I could retrieve my boy from the blue board of doom papoose board.

The nurse told him he could have three stickers for being such a good boy. She held up three fingers, and Nolan immediately brightened. He held up his fingers in a similar configuration and said, "This many?" She nodded, and he squealed with glee. THe traditional "three" used by most people is the sign language number for six. Of course, he raided the sticker box and took six stickers- the nursing staff cracked up once I explained the whole "six vs. three" thing.

It was an easy drive home, with no gagging or choking this time. The nurse practitioner pulled the probe up a bit, so it is not right on his gag reflex. Mighty nice of her, I might add.

Watching How to Train Your Dragon

The numbers need to stay above 5.5- I've seen several drops to 5.6 (and one to 5.2). On average, they are much better than the last run, though. He's due for his Nexium in about ten minutes and he'll get more Zantac at 8:00pm. Hopefully this will be enough to keep his pH numbers above that dratted 5.5 number!

We will return the probe tomorrow, and determine if Tuesday's supraglottoplasty surgery is a go/no-go for launch.

On the Bright Side

Unexpectedly canceled appointments always lead to a lot of stress: all of that angst in gearing up for a stressful procedure is heightened when the appointment is canceled and puts a whole chain of medical events in limbo. Then we have the sitters lined up (for Matt) that we have to contact, the day of school missed for both boys, and the hours of work missed by my husband.

On the other hand, talking to the ENT office personnel every 15 minutes this morning did give me access to Nolan's echocardiogram/EKG results: totally normal. While the ENT has not reviewed the results herself, the nurse practitioner looked at the report and gave me the information. His heart is fine, despite year(s) of severe apnea.

Nolan originally had a well-child appointment scheduled for this Friday, and I forgot to cancel it. Good thing, since the pH probe has been delayed until next Tuesday. We will go to the pediatrician tomorrow and do the routine height/weight/how-is-he-doing checkup. They also do a quick blood count at the pediatrician visits, which is important because Nolan is at risk for anemia (and calcium deficiency and B12 deficiency) from prolonged use of high-dose proton pump inhibitors.

Since we have no school or doctor's appointments today, we are going to play in the snow and finish decorating for Christmas. If nothing else, living in Western New York with a medically complex kiddo keeps us flexible!

Buffalo Trips #2 and #3 Canceled

Lake effect snow: the bane of our medical-travel existence. Nolan's pre-op appointment (and pH probe placement) was in Amherst. A very strong band of lake effect snow pummeled the south towns of Buffalo last night, resulting in the closure of the I-90. 20 inches of snow fell last night on the highway, and another foot is expected today.

I called the ENT's office and we are trying to move his appointment to next Tuesday. This may impact his scheduled surgery on the 14th, but we won't know until we get the pH probe results back (on Thursday or Friday). If the surgery gets canceled, we literally won't know until a day or two before the scheduled date. This sucks, because we have family scheduled to fly in the Sunday before the procedure. I am waiting for the nurse practitioner to call me back to verify whether the data will be read by Friday the 10th of December. We need to know if the surgery is a go/no-go so that flights can be canceled or rearranged.

Drat this weather. Hopefully we won't get pummeled by another storm next Tuesday.

Busy Week Ahead

We really enjoyed our Thanksgiving break- eating a lot of turkey, making gingerbread houses, and playing in the snow.

This week is going to be insanely busy. The general schedule is as follows:

Monday:

Take Matt to preschool #1, order Matt's 5th birthday cake, take Matt to preschool #2, then go to Matt's hockey lesson.

Tuesday:

Take Matt to preschool, take Nolan to preschool, then drive up to Buffalo for Nolan's EKG and Echocardiogram.

Wednesday:

Take Matt to preschool, then hockey (our light day).

Thursday:

Drive up to Buffalo to have Nolan's pH probe placed. Survive the day by watching DVD's the kids love.

Friday:

Drop Matt off at preschool. Drive up to Buffalo to have the pH probe removed. Drive back to Jamestown and pick up Matt from the babysitter's* house. Go to the Christmas parade.

Saturday:

Matt's 5th birthday party at the bowling alley. BYOA (Bring Your Own Advil).

For a stay-at-home mom, I am rarely at home!

*Our babysitter is also our SLP. And no, you can't have her. She's wonderful, and she's OURS!

Dagnabbit!

pH probe, the evening before it fell out.

The good news:

The ENT's office gathered enough data from the pH probe, even though it fell out a bit early.

The bad news:

The Nexium isn't getting the reflux under complete control. Nolan was showing pH drops while eating (which we saw) and also while he was sleeping.

The revised plan:

Nolan is going to have Zantac added to his medication schedule. Our medication alarm clock is going to work overtime for the little guy. He'll take Nexium 30 minutes before eating breakfast in the morning and again 30 minutes before dinner. He'll take Zantac at 7:00pm and again at 7:00am.

Second verse, same as the first:

Before doing surgery, we need to do another pH probe, to verify the acid reflux is being controlled by the two medications. We will have the pH probe placed on December 2, and will return the box on December 3. They will try to read the information from the probe as quickly as possible.

In the meantime, I am going to think alkaline thoughts. I deeply hope the Zantac helps control all the acid with my little GERDling!

Still Waiting...

I called the ENT's office yesterday, since I haven't heard anything with regard to the pH probe data. The front office person wasn't sure if there was sufficient data, and told me the nurse practitioner has a note to give us a call. We're still waiting- hopefully she'll give me a call today so I can stop fretting. I am operating under the assumption that "no news is good news."

I scheduled Nolan's cardiology appointment for November 30. I secured an afternoon appointment, which is excellent because it means Nolan won't have to miss school. Despite his attempts at mimicking catatonia in some social situations, he really does love school. He gets pretty upset when he doesn't get to go! Looking at his class picture, he is definitely one of the smaller kids in the class (though not the youngest by any means).

Nolan with the other 2 and 3 year olds.

Picture day is always interesting with three year olds. He had irrepressible cowlicks and a snotty nose, and I am ever so thankful for the photographer's photo editing skills. He insisted on wearing the galoshes- he definitely has his own fashion sense!

Update on the pH Probe "Fallout"

I called the ENT's office as soon as the phone line opened up this morning. The office personnel told me to bring it back to the office, and they would download the information from the recorder and decide if enough data was obtained.

Dennis took (another) day off work and we loaded the boys into the truck. Our ENT maintains two offices, and we were going to the site in Depew (on the southern edge of Buffalo). I walked into the office and the nurse saw the probe in a plastic baggie and exclaimed, "Oh, no!"

I handed them the probe and explained that it came out sometime between 3:00am and 5:50am, when I fell asleep. Unfortunately, the probe has to be sent to the main office in Amherst (north of Buffalo) to determine if enough data was gathered. We still don't know if it has to be repeated or not.

We got about 14 hours worth of data, so hopefully that will be sufficient. They will download the data from the recorder tomorrow, and will give us a phone call as to whether we need to repeat the pH probe study or not.

While I was there, they handed me the paperwork for Nolan's surgery (the supraglottoplasty) on December 14. They also handed me the order for the EKG and the echocardiogram. For some reason, I thought the echo and the EKG would be performed at the time of surgery, but it makes sense that we would do these studies prior to undergoing major airway surgery.

I'll call the cardiologist tomorrow to book an appointment for the EKG and echo- I hope to get an afternoon appointment so the boys don't miss preschool.

I will be very, very glad when January arrives and all of this hullabaloo is over!

*&%#$%!

Sometime between 3:00am and 5:00am, Nolan pulled his pH probe out.

If the ENT doesn't think there is enough information on the probe (likely), then we're going in for another pH probe placement/run.

This. Totally. Sucks.

pH Probe, Round 2

Driving up to the ENT's office is always stressful for Nolan- nearly all of his medical issues are ENT related, so poor "Dr. B" always gets to handle the difficult procedures.

We talked about his mixed hearing loss (big relief that the sensorineural portion is stable), and she checked his tubes (they look great). Nolan has another cold- his second since the bronchoscopy was performed. He never catches a break with the germs that fly his way.

She showed us a video of his laryngomalacia. His aryepiglottic folds* (near the epiglottis) completely occlude his airway when he's sleeping. He is also developing laryngomalacia when he is awake; we were able to hear some stridor while he was playing with the backpack on the floor. The severity of his laryngomalacia (with the associated severe GERD and severe obstructive sleep apnea) means that a supraglottoplasty is necessary. There's really no way around this one, unless we want to chance high blood pressure and heart failure from unattended chronic obstructive apnea.

Speaking of reflux, we managed to get the pH probe placed. Nothing makes you feel like the Worst Mommy Ever than helping to papoose your child to have a probe passed up his nose and into his throat. Dr. B came in and helped place it, since Nolan wouldn't swallow- she heard him crying and came in from her lunch to get it placed as quickly as possible. I did take some "No-No's" (arm restraints), but he has been leaving the probe wire alone, so I took them off. He's currently watching Toy Story 3 and cuddling with a blanket on the couch.

Still a bit "gaggy," but happy to watch Pixar cartoons.

As an interesting aside, the FDA passed an "acidified food" requirement (21CFR 100-169) in the 1970's, to prevent the formation of Clostridium botulinum (botulism) in canned foods. While this is great for preventing spoilage and possible food poisoning, it isn't such great news for acid reflux sufferers. The pH probe read 4.5 when Nolan ate some canned pears this afternoon, and dropped again when he drank a Capri Sun "Roaring Water." We try to avoid processed foods as much as possible, but it looks like we are going to have to be extra vigilant when it comes to any canned or pre-processed food.

Dennis and I used pH strips to test the pH of the "Nomato" brand ketchup and spaghetti sauce alternative: it has a pH of 4.5. Believe it or not- the food marketed to acid reflux sufferers is acidified!

Bananas have a pH of 5.7

We scheduled surgery for December 14. His ENT will perform a bronchoscopy prior to surgery, to verify the severity of the laryngomalacia before embarking on the supraglottoplasty surgery. He will also have an EKG and echocardiogram performed, to check on the status of his heart. He has had severe obstructive apnea for a while now, and we need to make sure that his heart hasn't suffered from the apnea (cor pulmonale is a potential consequence of long standing apnea).

In addition to trimming the aryepiglottic folds (which will also strengthen them as scar tissue forms), Nolan will have his lingual tonsils pared down. The poor kid gets to go through two tonsillectomies in less than a year. He had his "regular" tonsils removed in April, and the lingual tonsils will be removed when the ENT does the supraglottoplasty this December.

The recovery from major airway surgery is rough- he will spend a full 2 days in the pediatric intensive care unit (possibly 3 days), and may have trouble eating and drinking for around 2 weeks. Hopefully he will latch onto his popsicles and will be right as rain by Christmas.

We return to the ENT tomorrow to have the pH probe removed. We will get the results in about 2 weeks- hopefully the Nexium is doing its job!

*My gift to you: an enhanced vocabulary.

Looking Dicey

We're definitely heading up to the ENT tomorrow, but the pH probe is looking pretty dicey.

Dear (little) fever, please come down!

GI vs. ENT: We Have a Winner!

I waited patiently throughout the day Tuesday, knowing that the turf war between the GI and ENT doctors was occurring. While I wasn't there to observe it, I assume the interaction looked something like this:

Before I could call the GI's office to find out which doctor was victorious in the epic Nolan Reflux Care battle, my phone rang. It was the ENT's office, proclaiming victory.

When we visit the ENT on November 15, we will discuss his laryngomalacia and the benefits/risks of the supraglottoplasty surgery. Then the ENT will place a pH probe in the office.

This will be quite a bit different from the last experience. Last time, Nolan was sedated for an endoscopy while they placed the pH probe, so he doesn't remember the traumatic experience. This time, he will be fully awake when they place the probe. It will be done in the doctor's office, and then we will take him home (as opposed to being in the hospital). This will be difficult, since three year old children are liable to pull the pH probe out- thus ruining the study. The ENT's office assured me they would set us up with arm restraints before we go home. Oh, goody.

On the plus side, Nolan won't have to undergo sedation (dangerous for children with central apnea). The ENT will be taking over most of his care, which will consolidate the number of doctors we see. There is the hope, however faint, that the ENT will come up with a comprehensive diagnosis for the little guy.

Unfortunately, November 15 is going to be a Very Sucky Day. Traumatic for Nolan, and stressful for us as we monitor him to keep him from pulling out the pH probe. I will drive back up to the ENT on November 16th to have the pH probe removed. We will receive the data a couple of weeks after that, and will know if his reflux is controlled enough to proceed with the supraglottoplasty.

Keep us in your thoughts- I'm not looking forward to this one!

Like Camping, Minus the Fun

We headed up to Mercy Hospital in Buffalo for Nolan's endoscopy and 24 hour pH probe study. Since he is rather young and likely to rip the pH probe out of his nose, he would have to stay overnight for monitoring.

We left our house at 5:00am to be there in time for check-in, and then proceded to the pediatrics floor. I was concerned about being in a "grown-up's" hospital, but this really ended up working to our advantage. The pediatric unit only has 12 beds, and most of those were empty. This meant the nursing staff was very eager to take care of Nolan, who charmed them with his antics.

I was confident that the DuoCal was working, because we've been adding it to all his food/drinks and it had to be adding at least 200 calories per day to his diet. Plus, he's been eating better lately. They put him on the scale as part of the check-in process. He was last weighed about a month ago and was 23 pounds, so I was pretty sure we'd see a number like 24 pounds pop up on the scale.

Nineteen and a half pounds.

The boy weighs NINETEEN pounds. How in the world does that happen? Essentially, he's gained almost no weight in a year. I do have a hard time believing that he's lost four pounds in the past month. Perhaps the scale in the hospital was a tad "off," but I also have a hard time believing that it is off by four full pounds. So he's definitely lost some weight, despite the DuoCal and eating better. I can't explain the level of anxiety this causes: how can a child eat more and weigh less? We'll go back to the GI doc in a couple of weeks and weigh him on the same scale as his first appointment, and maybe he'll come up a little heavier. I can only hope.

Nolan and I were taken down to the surgical waiting area, and our GI Doc and the anesthesiologist came in. My hopes for a doctor who could come up with a comprehensive diagnosis were dashed when the GI doc asked, "now what are those in his ears? Earplugs?" She didn't remember who he was, and didn't know that he wore hearing aids. I gave a brief recount of his history to the anesthesiologist, then they took him back for the procedure.

A short time later, we were retrieved and shown pictures of Nolan's digestive tract. Everything looks pretty normal, except for some very minor irritation on his esophagus. There is nothing that can visually explain why he pulls at his neck, often refuses food, and fails to gain weight. Don't get me wrong- I'm happy that there is nothing obviously wrong, but how do you "fix" something that has no cause?

We are to make a follow-up appointment in two weeks, and if all of his labs come back normal and and his pH probe is normal, then we will start at the behavioral feeding clinic in the hopes that some occupational therapy will get him to eat more. Though I'm rather stressed, since he has been eating more, and simply lost weight in the process. My mind boggles.

Anyhow, he came out of the procedure in a quite chipper mood. He was lying in his little crib and asking, "Mommy go?" to the nurses. They gave him to me and disconnected his IV. The pH probe was taped to his face, and he had "no-no's" on his arms. They had also placed socks over his hands, since Nolan appears to be able to bend the laws of physics and can still reach his nose even when he can't bend his elbows.

Then Nolan and I waited. And waited. And waited. We had 24 hours to get through. A two year old boy, without the use of his hands, who was supposed to maintain quiet activities for a full 24 hours. The nurses really didn't have much involvement in our care- we were basically just camping out and waiting until the 24 hours were over. It really felt a lot like camping- no showers, no access to our usual diversions, and we got to sleep on a thin mattress in uncomfortable positions. Unfortunately, S'Mores were not allowed.

Nolan's "No-No's" kept his arms from bending

Watching Cars.

And STILL watching Cars....

I did have the foresight to bring along a DVD player, and my sweet husband went to the bookstore and bought me a few magazines. I think Nolan watched Cars about 15 times, interjected with a few runs of "Signing Time." Dennis headed home to take care of Matthew, and Nolan and I camped out. We found the playroom, and the doting nurses brought crayons and let us out into the general hospital area after evening fell. We roamed the halls and the maternity ward waiting area, and finally found the small playroom. I had to follow Nolan with the pH meter box the entire time, and was terrified about it pulling out of his nose. I did figure out a way to put the box over Nolan's shoulders, but that was a tad dicey since he's so small that the box almost touched the floor when he walked.

He finally fell asleep at 10:45pm. I fell asleep shortly thereafter. And we didn't wake until 6:00am- only two more hours to get through. We ate breakfast, played in the playroom, and the nurse came to pull out the pH probe. That wasn't fun, but it was fast and we were very ready to go home.

I have to call to make the follow-up appointment today, and we'll find out the results from the pH probe and the labs at that appointment. Only 2 more weeks of waiting to find out if all of Nolan's eating/weight issues are medical or behavioral. I hope these next two weeks go by quickly- this boy needs to "bulk up!"

GI Doctor Consultation

We had our consult with the GI doc in Buffalo yesterday. We learned a lot today (though no closer to knowing what’s going on with the little guy). She isn’t too concerned with his head lag, but is alarmed at his weight. She also said the method that Buffalo Children’s uses for it’s scintiscan is a waste of time. Since Nolan only ingested milk, the scintiscan is useless. They normally have a patient eat a compound with a known digestion time (usually oatmeal or scrambled eggs) to diagnose gastroparesis. So, we don’t really know if he has gastroparesis or not. It was basically a wasted test! She did note that his upper GI was normal, so whatever is going on is not caused by an obstruction, or a funny shaped esophagus.

She took down his history and she wants to scope him, because his weight is too low for his age (and he spits up and pulls food out of his mouth). He’ll have the endoscopy on August 12, with a pH probe placed for a 24 hour study for reflux. With his occasional spitting up, he’s got some symptoms that point to reflux but we haven’t seen it on any of the tests. Unfortunately, this means that he’ll have to stay overnight because they don’t want him pulling the probe out (it will be threaded through his nose into his lower esophagus). This will be done at Mercy hospital in Buffalo - she likes the probe equipment at Mercy better than the stuff they have at Children's.She gave us a case of “DuoCal,” which we are faithfully pouring into each cup of milk/juice that he drinks. Basically, we add the powder to his food or drink, and it adds 49 calories per packet. It’s a fat/carbohydrate powder with no electrolytes, no protein, or anything else that might irritate his system. It is tasteless and simply adds calories/fat. It also turns his apple juice white, which looks strange but apparently tastes just fine.

She did weigh him and he was 23 pounds, 0 ounces (so he’s gained a few ounces in the past few weeks, which is good)! He’s still below the curve, though. She ordered a bazillion stool/blood tests:complete metabolic panel, ESR (sedimentation rate), CBC with differential, amylase, lipase, urinary analysis with micro, celiac panel, GGT, T4, TSH, IgG/A/M/E and IgG with subclass 1, 2, 3, and 4. Then she ordered a stool evaluation for blood, elastase, alpha antitrypsin, pH, reducing substrate, and qualitative fat. We won't have any results until the end of August/beginning of September because she won't divulge test results over the phone. So we won't know the results until we have our follow-up a few weeks after the endoscopy.

I have to phone our local hospital to get the tests set up. Then we have a l.o.n.g. wait until we know what the results are.