Monday, November 15, 2010

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.


Melanie said...

My head is spinning.

Glad today is over.

Hugs to Nolan.

MB said...

Holy bleep that's a lot to keep track of and go through!!

Julia said...

Oh, poor kid!!! Well, I'm so glad things are moving forward, but what an ordeal for him, for all of you. Good luck!

xraevision said...

My heart hurt a bit when I read about the papoose board. I hope all of you are holding up throughout the procedures and impending surgery. We're going ahead with an MRI and CT scan with X's CI team, and I'm having a harder time with the medical intervention as he gets older and becomes more self aware. All the best to you and Nolan!

Ericka said...
This comment has been removed by the author.
Ericka said...

Oh my gosh :( poor Nolan. I will be thinking of you guys!

rouchi said...

Oh!!Poor both of you.He is really going through hell and you as mum has to be so strong when inside of you is churning.Really hope all is well soon.Take care.

The Wednesday Poet said...

I will be praying for Nolan (and you).

I think it is bad every time I have to hold down Josh for more blood draws (which is happening quite a bit lately), but this sounds absolutely heartbreaking. At least you can rest assured knowing you are assisting the doctors in helping to reverse some of these complex medical issues.

Joey @ Big Teeth and Clouds said...

I can't imagine. And now he pulled out the tube. I wish we could just fast forward to the happy ending for you guys!

Amber DBTD said...

Poor baby! Good luck. Hope this will help him feel better.