Next steps...

We met with the ENT today and we discussed the current issues (BiPAP, breathing, snotty nose, hearing, etc) and then the doctor performed a scope. He was careful to warn that the scope likely wouldn’t yield any true answers, but may help us put together more pieces of the puzzle. For newer readers, or those who may not remember, Wyatt is quite the anomaly. Anything that is typical, he doesn’t do. Meaning, he sort of defies science. We have more than one doctor who has stated, “I’ve never seen anything like this before...” in reference to Wyatt. It’s kinda cool to think that he defies logic and truly is one of a kind. Also suuuuuuuuper frustrating when you’re trying to plan for caring for him. 

(Sometimes clinic waits are okay...)

Anyway, we reviewed his background, discussed concerns and then he did a scope. Let me tell you how fun that was. A wiggly two year old trying to shove a camera up his nose? Yeah. That was cool. Not. 

(Sometimes clinic waits are not okay...) 

The scope was enlightening, but also didn’t really answer many questions. His adenoids were enlarged, but his tonsils looked okay. His tongue is in a great spot and isn’t causing the apnea/breathing issues, but the enlarged adenoids may be impacting. Regardless, the doctor wants to remove them in hopes that the very tiny space he currently is breathing through will enlarge, allowing him to breathe better and hopefully decrease his BiPAP settings. While he’s in there, he wants to get more images with the scope, wants to get another hearing test, and wants any other doctor who wants to get a good look, to get s good look. As a result, scheduling will take a little bit of time. There are seriously 6-8 doctors who want him sedated and want access to him, while sedated. So... we will cross our fingers for one time under anesthesia, and some answers. 

(Clinic days are EXHAUSTING!) 

So we will wait to hear when surgery is scheduled. In the meantime, we have a GJ tube issue and as a result the tube will need to be replaced. A part of the tube is broken, but we can still feed him so it’s not an emergency situation. We are scheduled for tube replacement on Monday, unless something happens and we can’t feed him. We are crossing our fingers and toes that we make it that long. If the tube stops working, we have to head to the emergency department, and then wait to get in the surgical rotation, which isn’t easy when you are technically not an emergency surgery, just an urgent surgery. They would have to do IV nutrition while we waited. Certainly NOT how we ever want to spend a weekend, so we are treading carefully with the tube and crossing fingers and toes in the meantime. 

In other news, this guy decided to drink from a straw! Not bad for a kid who only eats about 1/4 cup of food orally. We have started trying new things just to expose him, with zero expectations. And sure enough, he shocked us and pursed his lips and sucked on the straw! I’m not sure who was more surprised, me watching or him realizing water was in his mouth. We will continue to let him explore foods as he is comfortable. 

(Stroller aerobics while we wait...) 

We are looking forward to celebrating Christmas next week and continued health for Wyguy. 

New Kicks and More

Guess who got some new kicks?! 

 This guy officially has his SMO’s (Supra malleolar orthosis) and AFO’s (ankle foot orthosis). These are designed to give him more stability in his ankles and legs to assist with standing. So far he loves them. We have already seen a huge improvement in his willingness to push up to attempt to stand. Our hope is these will give him the strength and support he needs to develop his leg muscles. 

Last week we got the results of his kidney test. It was a good news/bad news report. Good news? It hasn’t gotten worse. Bad news? It hasn’t gotten better. We were hoping for some improvement, but that wasn’t in the cards. We will meet with the urologist to discuss next steps. It could be anywhere from back to antibiotic prophylaxis to surgery. The urologist will chime in and help us to decide. 

We celebrated is 2nd birthday on Saturday. He loved the candles and hated the cupcake. He totally can’t be my kid... who doesn’t love cupcakes?! We might be able to blame his molars for his attitude, though. Turns out this guy decided to get his 2 year molars ON his second birthday. That’s fun for all of us. Not. 

Wyatt met Santa today! It was extra special because Wyatt has a special connection to this Santa. He looks a lot like a dear friend of ours (if you get my drift...) which made the picture taking much easier. No tears and lots of giggles. 

He will have a scope completed this week to check his airway. ENT will chime in and report to pulmonologist about what they find. The current hypothesis is there may be something anatomically impacting his airway, leading to the insane sleep apnea. Typically kiddos with sleep apnea don’t require BiPAP (they may require CPAP though) and definitely don’t require the high pressures he currently receives. In addition to this, we are waiting to hear about a date for his next sleep study. 

We remain hopeful that we are turning a corner with his health and he continues to remain stable. (Hopeful but not delusional... we still have our hospital bags packed just in case)

The jury is still out on his feelings about snow. He hated laying in it, but didn’t mind mama holding him. We enjoyed about 3 inches of snow on his birthday. He wasn’t as thrilled as I was. This Michigan mama enjoys snow. 

Here’s to a great week, filled with some answers and continued progress in therapy!