This last week Samantha had her endoscopy and an adenoidectomy. I was anxious but tried desperately not to show it. And we made it through fine.

Samantha woke at 3:45 a.m. the day of because she was anxious and excited. She was ready to get it over with. We left after 5 and headed to CHOMP before the sun was up.

Samantha was very relaxed pre-op and met all her doctors and nurses. She was excited that she got to take her lovey, Baby Sister, with her in the operating room. And I was so pleased that the nurses and doctors would accommodate that--I'm sure it helped her feel calm.

The endoscopy took only 15 minutes and the pediatric gastroenterologist was pleasantly surprised. Despite all of Samantha's GERD issues, her esophagus and stomach looked perfect. There was a little redness near the opening to the intestines at the bottom of the stomach. He took a biopsy of that part of her stomach to check for gastritis and celiac disease. Anatomically, however, she was perfect.

About 25 minutes later the ENT came out to talk about how the adenoidectomy had gone. He was very surprised by what he found. Behind Samantha's adenoids there was a pocket of bacteria that was not visible when he looked up her nose with a camera previously. The ENT asked if she'd been having a goopy nose, to which my response was "No. Her nose hasn't been running." Typically people don't have pockets like she did, but the adenoidectomy took care of it. He did have to suction out the bacteria and do a saline rinse three times each, so she was a little more banged up than expected.

The recovery was a little rough. The gas and oxygen cause a dry throat along with both procedures, so there is a lot of crying and hacking/coughing. CHOMP nurses were great. They had me get in bed next to Samantha to calm her down and soothe her. I rubbed her back and legs, kept her from pulling out the catheter in her hand, and fed her ice. I don't know exactly how long I was in the bed next to her (not very comfortable), but she slept a bit and ready to get back home.


Both doctors are hoping that these procedures will help eliminate her post-nasal drip problems and thereby not activate the acid receptors in the esophagus/stomach. Samantha wants to know if she can finally stop Prevacid for good--I sure hope so. We meet with both doctors in a month to see how things have improved.

I'm hoping that the good review of the stomach means that we can totally bypass the PH probe, which would require a probe into her lungs for 24-hours to measure the reflux/acid. That wouldn't be fun.

For now she's still recovering. The sore throat has improved and she's starting to come back to her former self. She'll be ready for school come Monday.

Today was chaotic and stressful. I started my first dose of a two-week cycle of prednisone in the last ditch attempt to get rid of the swelling in my hands. I'm not sure I'll be able to sleep tonight and that just isn't good because my mind will wander and I'll worry . . .

We met with Samantha's pediatric gastroenterologist today to discuss her chronic reflux and issues related to aspirating. Since 2010 I have charted that every summer she winds up with a bacterial infection in her lungs just days after swim lessons. We give her a high dose of prednisone for a few days and then taper along with antibiotics and a concoction of inhalers. Last year it was the worst yet and the poor kid started second grade on 60 mg of prednisone. She was an emotional wreck.

But it happened again this year like clockwork. Although we got on top of it within hours of the second cough, it still took three weeks to stop. And this time we noticed the prednisone had no effect, which meant there was something else going on.

Today the doctor politely said that we should have done an endoscopy three years ago. We were all hoping that Samantha would outgrow this, however. So next week we see an ENT to check her adenoids. And depending on what the ENT sees we will have an endoscopy within a few weeks with or without an adenoidectomy.

The results of the endoscopy will then determine if Samantha has to do a PH pump study and/or if she'll need surgery to tighten her esophageal sphincter.

It's all so scary. I don't even want to have my child put under for the endoscopy. But then if we can fix all this we may be able to get rid of the cases of Pulmicort, Xoponex, containers of steroids, and the bottles of antibiotics she takes every year. It could change her life . . . I have to keep that in perspective.

Split second

I've been scared a few times in my life--like the kind of scared where you make a split second decision that can make or break a life. Two of those have been with Samantha in the last year, the second of those today.

She quite frequently aspirates into her lungs in the winter. Whether or not it is related to acid reflux, hypothyroidism, or illness, I do not know. Thankfully we have a wonderful pediatrician who believes in me, rather trusts me enough to write us a storage closet full of inhaling corticosteroids. This is the second time those boxes of inhalants have kept us from the ER and who knows, a tracheotmy?!

Samantha was sitting down on the floor eating her goldfish when she choked. She took it right into her lungs and was grasping for air. Every tried breath was a cough taking more and more oxygen. I ran to the cupboard and pulled a tube of Xoponex into the nebulizer and over her face. I reclined her in my lap. She continued to cough every time she inhaled. After about two mintues and begging her to relax--"Please, don't cry, it will make it harder to breathe"--she calmed down enough to take a few breaths without coughing.

I had a choice. I could have called 9-1-1, but that would have taken too long. I'm so thankful that we have the medication we need at hand at all times. Goodness knows how it could have turned out. Last year when this happened it took us 4-6 hours of solid breathing treatments to get her from blue to pink. It's amazing how clear things become when you are faced with such serious and potentially deadly events.

Samantha is okay, terrified, but okay.

Still in the Dark

Once again we're at a loss. Samantha's home indefinitely, coughing constantly, and her play is really restricted. If she gets overly excited or starts jumping around she coughs hard--think of a smoker's cough. The breathing treatments help minimally, so the brain isn't registering that part. We're going to have to start her on some heavy-duty cough medicine with codeine. Personally, I have a bad relationship with codeine. I'm not sure how she'll handle it, but hopefully better than I do. The doctor just needs to get her to stop coughing or the situation will get worse.

He suspects that the cough is worsening from the reflux. But we still haven't been able to find the reflux culprit. We are waiting for her to get better so that she can have blood tests completed which tests for food allergies. The doctor stopped short of asking for an elimination diet, but we need to start somewhere. I've been suspect of the breakfast cereal she likes, which contains a lot of corn. She's had an intolerance to corn since she was little, but never diagnosed with an allergy. Corn, however, is in everything. It may come down to me making our cereal if that is the case. But we also have to restrict milk and soy, which doesn't leave much else. She likes Chocolate Almond milk, but not the regular kind.

If the cough doesn't cease she'll have either an overnight stay at the hospital with a scope down her throat or another barium swallow with a video to watch her cough/reflux so we can see how much is ending up in the lungs. The doctor also said that we have to eliminate oils from her diet while she's coughing--a small amount aspirated could cause inflammation in the lungs for a month or longer.

To say this is depressing is redundant. We're confined to home, that means mommy too, and Alyssa is very upset, feeling very left out.