This may be my longest post yet. Bare with me. 😬😬

By now everyone who reads my blog knows that Mr. Wally J has never slept well. Ever. Nine long months of little sleep for both Wally and I. We received a referral from our pediatrician for a Dr. Mannaa (Pulmonologist who specializes in sleep) back in June to inquire about a sleep study. But unfortunately he is a very busy man and they could not get us in until today. After the failed Ph test (failed in my mind) I almost cancelled this appointment. Why you ask? Because I have been throwing myself a pity party. And quite honestly I am feeling pretty defeated. I am so afraid that I am going to continue to put Wally through these tests only for them to come back normal. I have been feeling pretty crazy and I wasn’t sure if he even really needed to see a pulmonologist. But I decided last night that no harm could come from hearing Dr. Mannaa out, to see what he had to say. So off to the appointment we went!

If anyone of you in our area, reading my blog needs to have a child seen by a pulmonologist, I definitely recommend Dr. Mannaa. He was so personable and definitely knew what he was talking about. He took the time before our appointment to go over Wally’s (rather lengthy) history, researched Barth Syndrome in detail, and already had an idea of what he wanted to see done before he even glanced at Wally. He made me feel comfortable, not crazy, and agreed that something is not right with his sleeping. He promised me that he would do everything in his power to get to the root of Wally’s sleeping issue. But not only that, he wants to look in to other things as well!

Little back story. Barth boys tend to have very distinctive facial features. Well our ENT (Dr. Gootee) noticed that Wally’s chin is a bit recessed. Meaning it sits farther back on his face than most chins. (I posted a side picture below to help visualize what I am talking about.)😊

Dr. Mannaa also noticed this and said when a person sleeps all your muscles relax, even your tongue. And because Wally’s chin sits so far back hes wondering when he is sleeping if his tongue relaxes over his airway causing obstruction. Another important thing he pointed out was that due to Wally’s hypotonia (low muscle tone) he’s wondering if that is affecting his sleep at all. (Meaning when he’s in a deep sleep, with his muscles really relaxed, he doesn’t have the muscle strength to circulate the carbon dioxide out of his lungs). If this is happening he could startle awake, kick his legs, wake up screaming (everything he is doing) because that wakes the muscles up and basically says, “hey! You need more oxygen man!” 😂😂. Another sign of this is sweating!! (Wally has never not woken up drenched in sweat).

So what do we do? Well he wants a swallow study done (Wally’s never had one) to get a good look at what’s happening when he’s eating and make sure everything looks ok. He also wants a sleep study ASAP. These tests will be schedule next week hopefully for sometime in October. He also talked about Wally’s risk for infection. And with flu and pneumonia season fast approaching, and because of his hypotonia, he wants Wally to have a vest. The goal is that he would wear this vest (that shakes) when he sounds congested or wheezy to help break mucous up. By breaking up the mucous it will be easier for him to cough, and the end goal is to hopefully prevent pneumonia. Overall I feel good about the appointment and that we have a game plan.

Whew. 😪. The appointment was a lot. And kind of overwhelming. But FINALLY a doctor made me feel that I wasn’t being crazy! He is concerned! And that puts my mind at ease that these tests are necessary. So yes… more tests. But hopefully we can get them done as soon as possible and get answers. I also want and need to clarify…. I do not want there to be anything wrong with our sweet Wally J. But…obviously there is something troubling him. And all I want is answers so we can find a solution. He needs to sleep to rest his heart. He needs to sleep to keep from getting sick. He needs to sleep to grow. I will do everything in my power to make sure he can get the sleep he needs.

So that’s where we are at. We also had a CBC drawn yesterday due to low grade fevers, he’s been pale, and pulling at his ears (left ear drum was red. But not infected. So at that time yesterday we decided to wait and see and not move forward with antibiotics). Well… we got those results back today thanks to our amazing friend Cassie. His white blood cell count was normal. Even better than last weeks count (yes we had his blood drawn last week too. Trying to get a look at how he trends). But, his neutrophil count was even lower than last week. Still in the 900s. But definitely lower. What does this mean? Well it doesn’t scream DANGER but it does put him in the moderate risk for infection category. 😔😔. Wally’s ANC (absolute neutrophil count) has never been below a 1000 (that we know of) and now the past two weeks he’s been steady in the 900s. Well Dr. T, even though he doesn’t currently have an infection, wants to do a round of amoxicillin as a precautionary. Blah! We hate antibiotics. But we hate infections and hospitals more. So we are going to do the round of antibiotics and hopefully Wally doesn’t catch anything. This is why it’s sooo important to vaccinate and keep your children home when they are sick! Wally is vaccinated, we take all the precautions, but he can still get very sick. And unfortunately a common cold for him could land him in the hospital. And as much as we love our OSF nurses 😉 we do not want to go back to the hospital.

Sooo this was wayyyy longer than I anticipated! 🤷🏻‍♀️ But this is what’s going on in our world! More tests. More antibiotics. But hopefully soon… answers.

If you’ve made it this far… thanks for reading. Thanks for loving us! We wouldn’t survive this crazy life without our Wally warriors!

Love to you all!

Wally’s momma 💕💕

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