Upcoming Surgery

One of the most frustrating things about CF is that it is progressive. In this instance, "progressive" has a few meanings. First, progressive means that Toby's condition will worsen as he gets older. Second, and the one we have had to deal with more in Toe's life, is there are always new issues cropping up. You get used to the idea that your child has CF and that your newborn needs pancreatic enzymes to digest and then the lungs get an infection and you have to start doing antibiotics and respiratory therapy. You get used to respiratory therapy with Pulmozyme and the cough is not great, so you add saline. There's always something. As a CF parent, you know that scary conditions like CF diabetes, bad bacteria in the lungs, failing internal organs, or nasal polyps are all potentials on the horizon, but you learn not to stress about them too much, because you never know what's next on the docket and the one that's NEXT is the one to deal with. Very few things become "cured" forever. It's something else to add to the daily maintenance.

I'll give a full health update soon. What's NEXT for Toe is surgery for nasal polyps. What are nasal polyps, you might ask? I am SO glad you did! We had this explained to us yesterday at the Ear Nose and Throat Specialist.

Children with CF build up mucus in their sinuses as well as in the lungs. Even with regular saline rinses and other preventatives, sometimes the sinuses become so inflamed, that the inflamed tissue pushes into the nasal passages, between the natural ridges that exist there, forming polyps. As I imagine it, it's a little like sinus hernias...Over time, these polyps grow and eventually block the nasal passage. There are some things to do to slow the progression of polyp growth (we have been doing them), but once they are blocking the nasal passageway, surgery is the only option.

Toe has had polyps for about a year, and the doctors have been watching their growth. The last two months, the polyps have become a problem. Toe has been going through BOXES of tissue, trying to clear his nose. He has lost his sense of smell and can barely breathe through his nose. At our CF appointment mid-month, the doctor said, "WOW! Yeah! The polyp in his left nostril is HUGE," and referred us to a pediatric otolaryngologist (ear, nose, and throat doctor - ENT).

Toe has large polyps in both nostrils. They interfere with his sleep. They are driving him so crazy that he said, "Mom, all I want for my birthday is to get in to see the ENT doctor sooner than the 13th." We were able to get in on a cancellation and met the ENT yesterday. Surgery is imminent, but like all things CF, it is slightly complicated with many moving parts.

I'm supposed to call the scheduler on Monday who will talk to me about possible surgery dates. My understanding is that it can take insurance up to two weeks to approve the procedure. I'm not sure if we can set a date for two weeks out and cancel if the insurance doesn't go through, or if we have to wait until the insurance approves the surgery to schedule it. After that, Toe's situation is serious enough, that the doctor made a note about urgency to the scheduler, but she has no idea about her availability.

Once we set a date for the surgery (which could be in two weeks or not), we contact the CF clinic and set an appointment for a week BEFORE the surgery when we go to the CF clinic and they examine his LUNGS. The CF team wants Toe's lungs to be in fantastic shape before the surgery, so at that appointment, a week before his surgery, we will find out if Toe needs a hospital admission to give him IV antibiotics to "clean out" his lungs. This could be a week, a couple of days, or no IV antibiotics at all.

Then there's the surgery, which is an outpatient procedure. We have been told that there are 1-2 days of "drainage" and then Toe can resume school in 3-5 days.

So, the whole process could involve a few days' stay at the hospital before Toe's surgery, or not, and will happen sometime soon, maybe in February or March... Toe could miss a week a week of school or two, depending. In the meantime, we have to keep him healthy BEFORE the week before the surgery. During flu season.

Toe has been a champ. He is mostly excited for the surgery because he is so uncomfortable, although last night at dinner, as we were going over details, he had a moment of sadness, where he welled up and then said, "No. I can't cry. That will just make more mucus and I'll have to blow my nose more." We had a good laugh and moved on.

We have been told that polyps are an issue for about 35% of the CF population at our clinic. My understanding is that if you grow them, it will be a lifelong issue. We'll do saline rinses and Flo-Nase as preventatives, but the polyps will likely grow back. Some kids need surgery every few years, a few need it every year. As with all things CF, we will do due diligence and face the next thing when it comes.

Right now, to deal with the uncertainty, we're breaking it down and taking things in steps. Yesterday, we had our consult, followed by a CT scan of Toe's head, so the EMT could use it as a map as she shaves away tissue in Toe's nasal passages. Toe has been prescribed Prednisone (a steroid) to try to reduce some inflammation to make the situation more bearable in the meantime.

Today: Try out Prednisone to see if the steroid is ok, or if it makes Toe so wild/wired/amped that it's not a good idea to give it to him at school.
Sunday: WAIT. Follow all other maintenance routines.
Monday: Call scheduler and sweet talk and beg for a surgery date.
Then????  We should know more on Monday. Two days ago I was saying "We should know more on Friday," and we do. Sort of.

Toe had a great time with the CT scan. He said it was a little like the Star Tours ride at Disneyland. He also said last night, "I might have to fake nasal polyps, because I could ride that CT scan again nine times!" As you can see, his nose might be blocked, but his sense of humor is not.

I'll post more as I know more.

Toe's first "ride" on the CT scan.