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!

Seeing Santa

We had just one more item to check off the holiday "to-do" list before Nolan's big surgery: seeing Santa. All aboard the Polar Express!

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!

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!