Holding Our Breath...

We can now exhale. It feels so good. We held our breaths for over a week, not knowing if what we were doing was right. Not knowing if our lives would be changed after the results. Not knowing if what we have been doing was actually working. 

Then we got the call. Wyatt’s sleep study results were good. He did great. 

{Photo of Wyatt in pajamas, sitting in the recliner with a look of surprise on his face. He’s snuggled with his blanket.}

I feel like I should probably explain a little about our worry with having to get a trach. There are risks that come with trachs. Risks that we have seen our friends go through. Infections, clots, damage to vocal chords, damage to swallowing tubes, the list goes on. In the case of any intervention, you have to weigh the risks and the benefits. Because Wyatt has only demonstrated risks to breathing while sleeping, it was hard for us to imagine a trach just for sleep (which he doesn’t do much of...). Always, we would do what was best for him, but we felt confident he didn’t require it. Sure, neither of us our doctors, but we are experts in our son. 

The trach would also mean I likely wouldn’t be able to work, as finding someone to care for a child who is dependent on a ventilator is nearly impossible. We struggled enough to find someone to care for him with a feeding tube and seizures. 

For now? We don’t have to worry. And we are extremely thankful. 

{Photo of Wyatt stretching. He’s wearing his pajamas with his chest showing and a half grin on his face. His feeding tube button and dressing are barely visible.}

We were able to wean Wyatt off of oxygen on the BiPAP and his back up rate, which is the rate at which the machine will breathe for him if he doesn’t breathe, was reduced. The oxygen and back up rate are huge. He had extremely high back up rate on the vent and by pushing this down, we were able to see he can safely breathe at a lower rate. He still likes to “ride the vent”, which means he doesn’t always take spontaneous breaths while on the vent, but he’s doing so safely. All of the measurements they took were clearly within normal and no matter how he breathes, he’s breathing and doing so safely. 

Next step is to follow up with our Pulm team in office and we will get scheduled for another sleep study in 6 months. Our Pulm team felt like one reason he nailed the study is because he’s getting bigger and stronger. We agree. 

Big things this week, developmentally. He’s taking off his socks alone, on command. He’s waving when we wave to him. He’s fighting to get out of his car seat and sit up (thankfully the straps contain him once we wrestle him enough to get him strapped in the seat), and he’s definitely telling us how it is. Most of the time a no is met with him yelling back at us or shaking his head no at us. Typical toddler behavior! We count that as a blessing. 

We have a growth hormone stimulation test in two weeks, which is our next step hormone-wise. This will determine if he needs growth hormone injections. 

Have a great weekend! 

September... already?!

Wow. I know my previous post said time flies when you’re having fun, the same holds true. We have had a busy summer, lots of fun and some set backs. 

{Wyatt gearing up for our trip to Michigan. Collage of photos of him sitting in his high chair, playing with peaches and eating peach yogurt. Peaches are a Michigan summer staple.}

We traveled to Michigan for a little over a week, with a stop in PA on the way there and on the way home. Our trip to Michigan included a fun little virus and ended with hand foot and mouth disease, which cut out PA pit stop short. Upon our return, Wyatt developed a kidney infection, landing him in the hospital for two days. When this kid does things, he does them BIG! One illness? Nah. Two? Nope. Three? You bet. 

While in Michigan we spent time relaxing, swimming, and playing cards. It was a slow paced vacation, for sure. Much appreciated, given the busyness of the rest of the summer. 

{Wyatt practicing his sitting skills, while wearing his pajamas. He has a mischievous grin on his face, seemingly proud of himself.}

Upon our return from Michigan, we have continued to keep up with work, doctors appointments, and trying to have some fun in between. Wyatt has decided he now likes bath time, but much prefers to do things himself. Not just in the bath, but in all areas of his life. Totally typical two year old behavior, with some added frustration on his part since those things are more difficult for him. We continue to look for ways to offer him independence, while practicing the art of saying no and setting limits. Like when he shakes his head no at us and proceeds to take out his hearing aids. We remind him that’s not okay, and replace the aids. Over. And over. And over. 

{Photo of Wyatt brushing his teeth. He’s smiling a crooked smile and appears very happy to be doing it himself. What isn’t pictured is moments before when he was screaming and shaking his head no when Mom tried to do it for him.}

Wyatt has a big week coming up this week. We will head off for a sleep study on Wednesday. You may recall that our last sleep study (oh who are we kidding? Every sleep study!) didn’t go so well and doctors reset him back to his original settings which are very high. The goal at this sleep study is to start him off on the high settings and titrate his machine to fine the, hopefully, perfect setting. Our biggest hope with this sleep study is that his settings can be lowered a bit. The best case scenario would be lower settings. Worst case scenario will be he needs increased assistance/settings while sleeping. If that’s the case, we will begin the conversation about next steps. But we have been told the only next step if he requires higher settings is a trach. One step at a time, though. 

We welcome your continued positive thoughts for progress in his multiple therapies and a sleep study that provides clarity. 

Have a fantastic week!