Recovered

At first, I thought the supraglottoplasty/lingual tonsillectomy was going to be easier than the regular tonsillectomy/adenoidectomy surgery. Nolan wasn't as swollen, and the pain wasn't quite as acute in the early days.

What I didn't count on was the pain increasing on day 8 and then lingering for A Very Long Time. I think we finally managed to ditch the Tylenol with Codeine on Day 15. Even now, almost three weeks from the surgery date, Nolan occasionally will hold saliva in his mouth and complain, "My throat hurts!"

Those moments are rare, though, and he is generally recovered. He was supposed to take his antibiotic until Tuesday, but extreme stomach pain and diarrhea made us discontinue it a few days early. His doctor is out of the office over the holiday, so I'll have to let them know about the problems with the antibiotic on Monday. I really hate stopping antibiotics early, but bleeding diaper rash and severe diarrhea are enough to make me stop giving him the medication.

We've been busy over Christmas break- playing in the snow, visiting a new Children's Museum in our city, and generally enjoying the slower pace of life. My Kindle (Christmas present) arrived just before New Years Day, and I have been sucked into reading the many free e-books available online (as well as a few purchased books).

Tomorrow, we get back to the rat race that is therapy, preschool, and ice hockey. Though Nolan is quite happy to get back to School on Tuesday, I am sad that our little break is over!

Mr. Cranky

Christmas was a great deal of fun, though Mr. Cranky is having a hard time coping with the festivities. He's still having some pain and difficulty swallowing his saliva at times. He spent much of Christmas in a bit of a funk.

On the other hand, he was breathing silently last night, and slept until 9:30am today. He has developed a hoarse voice, so it is possible he is developing another upper respiratory infection. He won't take his medication voluntarily, and we've had more than one incident of Nexium and/or antibiotic being spat out on the carpet. I've weaned the Tylenol with Codeine down to about 1 dose per day, and he seems to be handling that fairly well- I think the crankiness is due to a general "icky" feeling rather than acute pain.

We are keeping things quiet and staying at home, letting him recover his energy and hopefully get past this bout of crankiness. Hopefully he will be 100% recovered before returning to school on January 4.

I, for one, will be very grateful when 2011 arrives!

Dear Codeine, I Love You

Nolan talking to, but not eating, a snowman cupcake

The ENT really wanted Nolan to discontinue the Tylenol with Codeine. I stopped the medication yesterday, and Nolan was rather cranky.

This morning, he woke up crying. Then screaming, whining, and general mayhem ensued. He wouldn't eat breakfast, he wouldn't eat lunch. He also wouldn't drink anything, or even swallow his own saliva. By noon, his mouth was held open and drool was pouring out.

I put him back on the Tylenol with Codeine. Regular Tylenol isn't cutting it, and the child is in so much pain he can't swallow. Within an hour of the medication, he was eating, chatting, and smiling again.

I'm going to give the medication another few days before trying to wean him off the pain medication again- the poor little guy needs a break!

Hanging in There

Nolan continues to recover and is doing amazingly well. He has played outside a couple of times for brief periods of time and is playing as if he didn't have major surgery this week! He is extremely cranky and can't swallow when the Tylenol with Codeine wears off, so we have maintained the pain medication. We have a post-op appointment with his ENT tomorrow afternoon, and will adjust his medication types/levels after that appointment, if she thinks he would do better on regular Tylenol.

Tonight is the last dose of his oral steroid (to prevent swelling in his airway), and he'll be finished with the antibiotic soon, too. We will be very happy to get back to his regular medications (Zantac and Nexium).

We are looking forward to Christmas and all of the festivities in this coming week, so updates might be a bit scarce as we get closer to the holidays!

Early Christmas Magic

Sometimes, Christmas Magic comes in abundance. With a lake effect storm swirling outside the PICU window, my little boy was tucked safely in a warm bed. Breathing, completely on his own.

He didn't feel very good, but Santa Claus made his way through the PICU and gave each child a small gift and their parents a great dose of hope and joy.

A little Christmas Magic

The night fell and my small boy continued to breathe, having only one temporary desaturation (likely a central apnea, unrelated to the procedure). In the morning, the nurse brought a tray full of breakfast. Aspiration is a big risk from this surgery, so we needed to have him eat successfully before he could go home. Nolan took one look at the eggs, and immediately wolfed them down. Then he asked for some cereal. Then a Popsicle. Then some macaroni and cheese.

The ENT called to see how he was doing, and she was amazed and thrilled. This surgery almost NEVER results in such a fast recovery. To everyone who said a prayer for our dear boy, thank you. They worked, and worked well!

By the afternoon, the ENT said he was doing so well he could be discharged a day early. We unhooked the I.V., took off the blood pressure cuff, and prepared Nolan to go home. There was, however, a little glitch. Nolan became rather attached to his EKG leads, and called them his "powers." Whenever anyone would come to his bedside, he would look at them out of the corner of his eyes and would say, "I have powers." We also learned very quickly not to reason with a three year old on drugs. Loratab is a wonderful invention, but makes Nolan a wee bit goofy!

When the nurse wanted to remove his "powers," he threw a fit. She had to give him her cell phone as a diversion, then removed the wires. She left the stickers on to avoid a full-scale revolt. She also gave him extra small leads to use at home.

Nolan, with Powers.

As we left the PICU, we ran into a group of elves handing out teddy bears. Nolan's Very Sad Eyes earned him a free teddy bear, then we walked to the elevator to go home. The elevators were not working for some reason, so we went over to the employee-access one (PICU patients are walked out by a staff member). The elevator was going in the wrong direction, so we went along for the ride. As it turns out, this was a very lucky decision! The Niagara County Sheriff's Department volunteers boarded our elevator with a giant bin full of toys. They saw Nolan's Very Sad Eyes and immediately gave him a V-Tech electronic reader and software.

By the time we left the hospital, we were lugging enough loot to rival Santa's sleigh. Despite feeling rather poorly and being in pain, these gifts brought a big smile to our little guy's face. Well, most of the time, anyway!

Feeling poorly, but healing quickly!

So now we sit, with a little boy who is healing rapidly and asleep in his own bed, breathing under his own power. And what better Christmas gift could possibly exist?

Supraglottoplasty (Update From the PICU)

Today has gone very, very well. Much better than we were expecting, since nearly all children with supraglottoplasties have a period of intubation on a ventilator. While the PICU had the ventilator unit ready and waiting, Nolan didn't need it. They extubated him shortly after the procedure, and the swelling hasn't become a problem. His oxygen levels have remained above 90% (except for some brief crying episodes).

He received morphine initially, but is now only on Tylenol and Loretab for pain relief. He is quite cranky, since he is not allowed anything to eat or drink until tomorrow. His throat is amazingly sore, but the medication is helping to keep him quiet (along with a plentiful supply of DVD's). Since we were expecting him to be intubated and sedated, we didn't bring along many toys- thank goodness for the hospital gift shop!

He will probably still be kept until Thursday, to have a day of observation once he starts eating (watching out for the possibility of aspiration issues). We will definitely be home by Thursday afternoon- what a relief! Right now he is receiving all meds via IV (a steroid, the Loratab, Protonix (PPI), Zantac, and Amoxicillin).

Santa Claus visited the PICU today and brought Nolan a matching game and a Go Fish game (he also brought the parents donuts, cookies, and pizza- Santa is truly wonderful)! They took pictures of the kids with Santa while I was out scarfing down a donut- I will post that picture once I get home. I'm currently on the PICU wi-fi network, typing on a laptop.

Things are going extremely well, and I can't wait to get home and be "done" with this round of medical events!

Tuesday's Surgeries

Warning: I am including actual photos of the larynx (voice box) within this post. If those types of things make you queasy, stop reading now.

Buffalo Children's (WCHOB) called with Nolan's surgery time. We are to check in at 6:30am and the surgery will be at 8:30am. This means we will have to leave our house at 4:30am, unless we opt to stay at the Ronald McDonald House in Buffalo. This would be my preference, because it would let all of us sleep a little longer, and not have to drive through ice and snow in the pre-dawn hours.

Nolan is having two procedures (three, really, but one doesn't involve any cutting). First, a bronchoscopy will be performed again to verify the laryngomalacia and to verify no other anatomical defects are present. Then the ENT will proceed with a lingual tonsillectomy.

Wait a minute, you might ask, weren't Nolan's tonsils removed in April? As it turns out, we are all born with three distinct sets of tonsils: the pharyngeal tonsils (also known as the adenoids), the palatine tonsils (what we refer to as "The Tonsils") and the lingual tonsils.

The ENT will be "shaving down" Nolan's lingual tonsils to help improve his airway. This has a similar recovery time to traditional tonsils, but we probably won't notice much of a difference because of the other, main surgery he is having performed.

Nolan's laryngomalacia means that his airway is floppy and occludes the larynx when he tries to breathe. A normal larynx looks like this:

The epiglottis is barely visible, and the vocal cords and airway are plainly visible (the vocal cords are the "V" shaped cords in the picture above).

Nolan's airway looks more like this (laryngomalacia):

When he tries to breathe, the aryepiglottic folds collapse into his airway, creating an apnea. The general anatomic configuration of this area of his airway also creates a lot of noisy breathing. For Nolan, this mostly occurs at night and causes sleep-disordered-breathing. We can now hear stridor during the day, especially in certain positions (when he is looking down at something).

To fix the laryngomalacia, the ENT will use a CO2 laser and "trim up" the aryepiglottic folds, so that they cannot collapse into his airway anymore. The scar tissue formed by this procedure will also help strengthen the floppy nature of his airway.

Obviously, mucking around in an airway is a Very Serious Thing, and the little guy will remain in the pediatric intensive care unit (PICU) on a ventilator for a period of time, until the swelling comes down and we are sure his airway is stable. He should be extubated on Wednesday morning or Thursday (at the latest).

There are a few risks and potential side effects of the procedure (including temporary aspiration issues), but I'm not going to go into those, because they are not very common and not likely to affect our little guy. This surgery does cause quite a bit of worry and stress for us, though.

I probably will not update the blog until we are home from surgery and the little guy is happily sucking away on popsicles again. We appreciate all your prayers and support!

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.